tag:blogger.com,1999:blog-48918904151058702032024-03-12T18:58:21.966-07:002nd chance @ life?This blog has followed my life with cystic fibrosis, having had two double lung transplants, being placed on ecmo a form of life support, learning to walk and talk and facing chronic rejection twice. Along side this I'm a fitness pole dancing instructor, aerial hoop and silks instructor and personal trainer. Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.comBlogger194125tag:blogger.com,1999:blog-4891890415105870203.post-84111115314901950072016-11-26T10:27:00.000-08:002016-11-26T10:27:34.993-08:00There's no place like homeAs I'm being wheeled out of the hospital doors, I know that whilst it's not the last time I will be here (I'll still be coming back for clinics) I will not see a lot of the staff here again. They have been coming in and saying their goodbyes for several days. These people who everyday fight to save your life and then, when there is no more they can do, help you to plan your final months with the upmost care.<br />
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To every last member of the team who has helped me this admission – the Doctors, Nurses, Psychologists, Physiotherapists and Porters, I do not think I can ever thank you enough. Helping someone to plan their last months must be the most difficult job for any health professional. They are there, firstly to save lives and when this changes to end of life care I understand it must go against every natural instinct. But helping someone die with grace, dignity, comfort and without suffering is a very important flip side of the coin.<br />
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Arriving home was actually a lot more relaxed then I thought it would be, usually I struggle with the stresses of coming home from hospital with all the re-arrangements that are needed, especially when all I could really do was sit there and boss people around! But as I was saying, this time around, I actually just felt really happy and relaxed.<br />
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Since being home I have had my home carers come in and surprisingly I have slipped back into this old familiarity with ease. This has been made easier with it being the same company I had before my first transplant. The carers are people who really do care. I have to say that caring for people is a hard job and one that has to be within you as a person. What I mean is that it takes something special to help people and enable them to carry on living their lives, or in my case help them to live their lives whilst they die.<br />
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I’ve been making sure that I’m not just watching the world go by though and have ben arranging lots of special things to do;<br />
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- A lodge break with my family for Christmas, there's a spa pool which I just want to float in while my oxygen tank sits in a rubber floating device.<br />
- A night in a treetop hotel which is on Port Lympne Reserve.<br />
- A trip to Glasgow with my sister to see my friend, Victoria, and our friend, Charlotte, is coming too. We have lots of fun things organised whilst we’re there.<br />
- Anthony Joshua fight which is something I wanted to do for my husband… I'm also super excited about as I’ve never been to a boxing fight.<br />
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These things run from now until January. In between all this I'm resting and spending time with friends and family whilst being snuggled up on the sofa or camped out up on my bed with my loyal companion, Kia. I feel reluctant to organise anything else past then at the moment as I don't know how long I’ve got, so I'm trying to just take one thing at a time and live every minute – creating memories that will last forever.<br />
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Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com13tag:blogger.com,1999:blog-4891890415105870203.post-55378581919782385462016-11-07T07:41:00.001-08:002016-11-07T07:41:46.682-08:00Final chapter<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">Every song has a ending, every book has to close, my story is coming to its finale and I'm here to tell you all just how beautiful it all was.</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">I'm 27 a age I never thought I would get to see but due to miracles from medical practitioners and my donors I have been kept here to enjoy what have been the best years of my life, experiencing things I could barely of dreamt of. I'm so grateful for every extra second Iv had with my family, friends and all the amazing people I met and those I got to teach and lives I got to influence, mostly I hope for the better.</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">I always wanted to make a difference with my life, leave a positive impact on the earth. I like to think Iv done that, whether with my Cystic fibrosis awareness, organ donation campaigning or the more simple ways of teaching my students love and self worth. This in the last year has been one of the most rewarding things to see my students grow as individuals and give them a space to be free from all the problems we each carry with us day to day. A small thing but I hope it left my mark.</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">I decided it was time to tell everyone my prognosis as it were because it has become a burden to hear, so your better then? And I hope your back on your feet soon? All ment with love and hope but I then feel I'm being false in my replies. The truth is my lungs are severely damaged, I do have BOS a type of chronic rejection but I do also have this RAS which I have spoken of. My lungs are shrinking upwards and squashing the upper lobes of my lungs. I have recovered from the pneumonia as best I can although the infection still lingers and this will be likely to linger due to patterns of rejection and infection being closely linked. All the other problems over the last few months, acute rejection and organised pneumonia can become part and parcel when you have a diagnosis of chronic rejection. Although to clarify if you have infection, acute rejection or organised pneumonia it does not in anyway mean you have or will get chronic rejection! I must emphasis this!</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">Why have I had this fast acting type of chronic rejection twice? I don't know. Statistically I just fit in with all the other statistics. 50% of people make it to 5 years, I am of the percentage that didn't or if you add them together I did. Either way I'm just incredibly grateful for what I have had and I want everyone to remember that going into transplant. It's no garuntee but whatever you get from it is so much better then before if you throw everything you can and enjoy every second. </span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">I feel everyone is going to ask the question about 3rd transplant as they have and in part I have ignored it but I will answer this's I am not well enough to be considered for a 3rd transplant. It's as simple as that and do you know what I'm ok with that, of course I would always want more time but I have discussed this with the professionals and there has to be a point when you trust them to make the best decision for you and I whole heartedly do.</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">So I am hoping to go home at the end of this week. I will have home health care, mainly because I want my family to be allowed freedom to still live there lives and be there as my family and friends not constant care although they will obviously be involved. I will also be connected with the hospice. Time wise I have 'months' this could be 10 this could be 2 but I want to remain as strong as possible so in the long run the time I do have is better quality. I will be enjoying time with my family and friends making memory's. </span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">For all those who know me the way I have been dealing with this in private is how I would like to carry on dealing with it openly. It can be uncomfortable for some but it is the 'real' me as much as you will ever see. That is black humour, joking inappropriately, talking openly, my Funeral is Almost planned to a T and I will carry on doing This. In all honesty it's going to be such a event I'm a little sad I can't watch (see this is me slipping a little of that humour in, getting you all prepared) </span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">Lastly, my aim was to raise £10k in the next year for Harefield hospital. The very place that have done so much to keep me alive, give me a amazing quality of life and in the last few weeks shown me more then ever why they are the lead cardio thoracic transplant centre in the country. They have supported me through every part of this journey and I hope I can reach my target to help them do this work for others.</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">I am bringing out a t-shirt/vest/top to help raise funds but in the mean time if you would like to donate here's the link once again the total from various people raising money is </span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text';"><span style="font-family: '.SFUIText'; color: rgb(69, 69, 69);">£</span><span style="font-family: '.SFUIText';">3924.79</span></p>
<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">http://uk.virginmoneygiving.com/KirstieTancock1</span></p>
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<p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';">Thank you to everyone for your on going support, I will update as and when but ask that you also respect my families privacy and my own if we do not. As we have always known this day would come this doesn't always make things easier. </span></p><p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';"><br></span></p><p style="margin: 0px; line-height: normal; font-family: '.SF UI Text'; color: rgb(69, 69, 69);"><span style="font-family: '.SFUIText';"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXORK9Qo-CorBx-t7mzTR9aP99SfJb7lmcxSrK-oFoPrnGCffz2kQ79PLwawDvYL7hNVwYFIZpV5TX7RBYkQfXx3VT-P9J_z-SLDZLFDCwH3BWc2N1kJRadWkyQU1NsZjjkmKEIxS6Yx4/s640/blogger-image--1316782822.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXORK9Qo-CorBx-t7mzTR9aP99SfJb7lmcxSrK-oFoPrnGCffz2kQ79PLwawDvYL7hNVwYFIZpV5TX7RBYkQfXx3VT-P9J_z-SLDZLFDCwH3BWc2N1kJRadWkyQU1NsZjjkmKEIxS6Yx4/s640/blogger-image--1316782822.jpg"></a></div><br><p></p>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com79tag:blogger.com,1999:blog-4891890415105870203.post-41679096876651478832016-10-13T11:56:00.001-07:002016-10-18T05:15:41.564-07:00A short trip to ITUSunday last week, my friend Amy traveled up to see me all the way from Devon, we chatter for a bit but then I had a little doze as I usually do because my body is working so hard. Then I started to get fever I get several times a day, this was particularly hot one and I had a few members of the team in and out to check vitals, then blood gases several times and turn the 02 up. They asked me if I was tired or couldn't stay awake anymore and to be honest I just couldn't stay away. My breathing rate was really high and while this was efficient to keep my C02 just acceptable they said I probably needed to be down on Rowan ward HDU which didn't really suprise me. I think the shock came when they came back and said I was really high risk now and would actually be moved to itu. I expected to be more panicked but all I thought is well I won't have to worry about doing my medications when I'm to tired, someone else can take care of that for me for now.<div><br></div><div><br></div><div>My mum, Amy and my sister packed my stuff which mostly couldn't go with me. I had a settled night on ITU apart from one blip where I woke up in tears saying I couldn't breathe anymore and needed bipap luckily the meds they gave me relaxed me and I managed the night off bipap. </div><div><br></div><div>I spent 2 nights in itu and to be honest somewhere that's been so scary for me before seemed to be a place of comfort. I was reasonably aware, some of the nurses knew me and all were extremely soft, compassionate and just what you need when your struggling. A lot of meds were regigged in itu, some to help fight my current pneumonia and others to help fight the symptoms so I can get things like eatting, Physio and rehabilitation done. All important things but when extreme sickness, vomiting, pain and lack of oxygen kick in all very impossible.</div><div><br></div><div>The phycologist came round to see me and I was very open to anything she could do to get me in the right place I needed to be. Which for me in my own words 'if my symptoms carry on like this I don't know how I will have the strength to fight much longer' and credit where credit is due I'm feeling so much stronger there were times when I just didn't know how to keep fighting. How do you carry on breathing when every breath feels like it's crushing you, panicking you, it's not enough but you can't get any more. </div><div><br></div><div>My fear when I die is it will be like that, I don't want to suffocate slowly I would much rather the pain be over very quickly.</div><div><br></div><div>Anyway I'm now on Rowan part of HDU. On humidified 02 as I have rotten sinusitus. My meds are getting on point and as my CRP has gone from 400 to 50 I haven't had any more temperatures, the symptom meds are all being finley tuned so that I can be as comfortable as I can and do my REHAB to start building some very weak muscle back and believe me I'm working so hard. The hard thing about this is when rehabing before my lungs got strong quickly as it was after my transplants these one well I don't know if they will actually get any better, the pneumonia might be treated but my lung function is not likely to get back to a point where I will ever be able to pole again. To be honest for me to get back to what I love I need a miricale and for someone who has received so many, I'm not sure I can ask for any more. For me my main goal is getting strength back as much as I can for what ever else comes my way and in the hope that I can make it home where I belong with my family.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_g8pGnXkvlbDkqpt4rKRgEAVOzeJwbBQhevTD1bDudpMDBADC66w7SzAfUqxPNzThMgKRhcS4SVkKopOAsrjQ6_1YZ3LI-J9vmASTfOweanafbb9uSJuTGmXQ8NH2Tg0LcqvBZMdheO8/s640/blogger-image-1002313168.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_g8pGnXkvlbDkqpt4rKRgEAVOzeJwbBQhevTD1bDudpMDBADC66w7SzAfUqxPNzThMgKRhcS4SVkKopOAsrjQ6_1YZ3LI-J9vmASTfOweanafbb9uSJuTGmXQ8NH2Tg0LcqvBZMdheO8/s640/blogger-image-1002313168.jpg"></a></div>Sunshine therapy with the family </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjM930tBZKrOEumRr20QeS22rHQCoAEibeFoYtgjOrwkSGw2YwNaLuAZMKKIeCnEc9gW8vXhNEVVi3Ra4cN-7vq_8uj2FPd5dPTKRAUAg6xK0LFUCXTv3XxUc2k6GIyBUTHmPUuHmLPK8/s640/blogger-image--1349062158.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjM930tBZKrOEumRr20QeS22rHQCoAEibeFoYtgjOrwkSGw2YwNaLuAZMKKIeCnEc9gW8vXhNEVVi3Ra4cN-7vq_8uj2FPd5dPTKRAUAg6xK0LFUCXTv3XxUc2k6GIyBUTHmPUuHmLPK8/s640/blogger-image--1349062158.jpg"></a></div>Working hard </div><div><br></div><div>I'm not ready to die yet that's one think that this pneumonia has affirmed to me. Even in moments of doubt I knew I could get through it if I had the right tools. Something Harefield have really come through with.</div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com11tag:blogger.com,1999:blog-4891890415105870203.post-46603075677369503402016-10-05T23:05:00.001-07:002016-10-05T23:40:40.922-07:00Will my strength Waiver?It often feels like the higher powers above are battling for my life, someone wants me here on Earth the other is saying it's time to go home. <div><br></div><div>I'm not on deaths door, that's not what this blog is saying, my health is more stable I haven't had any big drops in lung function, just the trickle of a percent or two, I'm still getting temperature and often feverish at night, my breathing is incredibly uncomfortable but still what ever part of my precious lungs are working are working well enough to keep my sats up. What this blog is saying is I feel like the last 6 month attack on my health feels somewhat deliberate. Every few years I'm battling for my right to life. Iv been so incredibly lucky to recieve both transplants and have a extremely good stint of health inbetween. Some people have not been that lucky at all and had complications from the start. But it still feels so incredibly unfair, I often hear people say why me and I have to remember . why not? What would make me so special to not have any health problems, it just doesn't work like that health and disease are not biased. </div><div><br></div><div>But still here I am feeling the uncertainty in my future. Wondering how much strength I have left in me? It makes sense that one person can only do so much, can only carry on fighting so long. What sort of life will this one be from now on if I do stabilise? I'm not saying I'm ready to give up, I'm really not, but I wonder if at some point my strength will waiver? </div><div><br></div><div>Right now it seems that maybe this isn't a infection after all, that all the changes on my CT, ground glass, consolidations, are actually another form of Chronic Rejection. A type called R.A.S I was always lead to believe that when I first had rejection in my first transplant it was B.O.S. Until recently when I signed the forms for my case to be discussed as part of a study, it turns out retrospectively they believe I had R.A.S or in fact maybe biopsies of the lungs showed it to be. I don't know if this means I have B.O.S and R.A.S or if Iv just had R.A.S all along. What I do know is R.A.S is more fatale and harder to treat.</div><div><br></div><div>So I sit here and I wait, I wait till they bronch me and tell me the results. Hopefully I do t have R.A.S and this really is just a tough infection. Mean while I carry on trying not to worry about my future but take one step at a time. Sometimes it's the only way to survive. Think about the seconds, minutes and hours but nothing more nothing further because I don't know what they bring and the fear of them can stop me enjoying the here and now.</div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com6tag:blogger.com,1999:blog-4891890415105870203.post-38525496440031692742016-10-01T16:25:00.001-07:002016-10-01T16:25:48.074-07:00The reality of my current situationI write this blog from hospital. I have been in and out since my last blog. I celebrated my 27th birthday inbetween and reached my goal of 3k for Harefield hospital which I'm so grateful to everyone For helping me do so. My birthday was lovely despite being pretty ill. My husband organised a lovely meal with friends and family and I got to see my brother and friend Amy in the day along with doing a hour of shopping in a wheelchair from shop mobility. <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMQDySdelznd_4O_bi0kNCgYxAMR5eWDc1plz238wAdVa3Mtz1Va5H6M1I0aaRvD7owYVm0XuWPlKCGit94PdYdL4Gb5BsBozDFiyPsESEyKII1ZN4hUjpRWeVAeCB1A61plelNWWrnnE/s640/blogger-image-1887652474.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMQDySdelznd_4O_bi0kNCgYxAMR5eWDc1plz238wAdVa3Mtz1Va5H6M1I0aaRvD7owYVm0XuWPlKCGit94PdYdL4Gb5BsBozDFiyPsESEyKII1ZN4hUjpRWeVAeCB1A61plelNWWrnnE/s640/blogger-image-1887652474.jpg"></a></div>Ready for my birthday night out, I know I don't look sick right? My ever lasting love for make up saving the day.</div><div><br></div><div>With every birthday I cannot help think how lucky I am to still be here thanks to my donors. No matter how ill I am right now, without them there would not have been any more days, any more beautiful moments, all the things Iv achieved in these 5 amazing years! I'm so incredibly grateful for that.<br><div><br></div><div>Currently my lungs are really struggling. My lung function has been going down and today it was a mere 0.94 litres this is just 24% I have been treated for a possible infection due to some changes on my X-ray, as you may recall I had changes on my CT before now I have these shadowy changes on the X-ray to. I don't know if there the same thing. Iv had over a week of ivs now and things have just gone from bad to really bad. I have had temperature pretty constantly for 4-5 days although they seem to have come down with the help of IV paracetamol being given very regularly. The only problem is... My chest is completely clear so the idea of a infection just doesn't seem right. I have also developed a blood clot in my mid line.</div><div><br></div><div>This rate of decline has really scared me and I said to my CF consultant today as I'm currently in Exeter hospital, that I don't know where this is going but having lost another 11% of lung function over night although my sats are holding there own, if I lose another 11% over night I may wake up barely breathing and that scares me. If this is a acute fixable episode then I need to know that I'm in the right place with the right people who can get me through this. Exeter are the most amazing hospital ever but as they know they are a CF centre not a transplant hospital. I'm worried about the possibilities of ending up in ITU but at the same time I need to know that I have that option if it came to it. I don't really have many options left so if there are any that are available to me to get me through this I need to know I'm in the right place to use them. So tomorrow I am being transfered by ambulance to Harefield. I hope all the medications can start to work very soon and before this escalates anymore.</div><div><br></div><div>People will tell me to stay positive and I am, I'm positive in that I'm surround by the people I love who are ready to help me fight, if I get weak and tired they will help me stay strong. Remember just because I feel fear does not mean I am not brave, I still feel the fear and face it head on, just because I can see the negative doesn't mean I'm not positive, i still chose to see the positive when surrounded by all the negative. Some days though it's just a little harder to find that one tiny glimmer. But I will.</div><div><br></div><div><br><div><br></div><div><br><div><br></div><div><br></div></div></div></div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com9tag:blogger.com,1999:blog-4891890415105870203.post-55643091519935029762016-09-17T11:10:00.001-07:002016-09-17T11:10:12.748-07:00Shattered glass affectSo I had my bronch last week and the result came back with Acute Rejection, this was the Clouding on my CT, also known as shattered glass affect a term I feel describes the feeling on my whole body currently so it has become the title for this blog. <div><br></div><div>I have to say this hit me fairly hard. My lung function was its lowest since receiving my second transplant at 40% the inflammation processes in my lungs made everything feel pretty tough. I was still recieving treatment for my organised pneumonia which is also a inflammation immune response in the lungs so it felt pretty frustrating that I then had actue rejection on top of that and my chronic rejection.</div><div><br></div><div>I recieved 3 days methyl pred, it didn't quite have the enitial impact I was hoping for but the idea is that acute rejection is treatable and reversible. Hopefully in the coming weeks things will improve.</div><div><br></div><div>So I decided while in Harefield I would take part in the Harefield 5k fun run. I say run because that's the title but in no way did I run. I walked and I struggled but I'm so proud to say I completed it. I think anything worth doing is going to be hard. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzqRcbwO9c28Bgb4ImQfK2hAJwTIPe0kNxtMvjnlllGBEIVUtVcDjD8Q23AivboENZy3Ix9j5fFXTjhxfnkE-1gxvTgklFS5KNBZA5_eToYmUEQLfSsHtHYFapq_jGC_pOW1iozECYhdQ/s640/blogger-image--1895721298.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzqRcbwO9c28Bgb4ImQfK2hAJwTIPe0kNxtMvjnlllGBEIVUtVcDjD8Q23AivboENZy3Ix9j5fFXTjhxfnkE-1gxvTgklFS5KNBZA5_eToYmUEQLfSsHtHYFapq_jGC_pOW1iozECYhdQ/s640/blogger-image--1895721298.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFL0QCv9y8AqOfEJewgrxjR3ocLi9E2TIGkmFkpuwzDN8OJHwKRsK3Sb0sRT1WCDLkcIAfld5zGeluSs-xuKxcPRStuXDugqHlxNT24YBnNJsla4F7FmYHZWD5FYLlR2O0g3ckgySV4Xg/s640/blogger-image-1670581116.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFL0QCv9y8AqOfEJewgrxjR3ocLi9E2TIGkmFkpuwzDN8OJHwKRsK3Sb0sRT1WCDLkcIAfld5zGeluSs-xuKxcPRStuXDugqHlxNT24YBnNJsla4F7FmYHZWD5FYLlR2O0g3ckgySV4Xg/s640/blogger-image-1670581116.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjldUuKUHYdmGro38Ms_PUMX_Yrlgi2bDUzoc1QKqgtE4wTsmfFmx5qRAJ1QtzgfMweK778of-IrWiuyktZ_bs14fNwCo9eknVyKo_bJuE2Bi0E4GDlh6RO1Kjtg2PsRdr6AXzNb_U2Hyg/s640/blogger-image-1806981319.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjldUuKUHYdmGro38Ms_PUMX_Yrlgi2bDUzoc1QKqgtE4wTsmfFmx5qRAJ1QtzgfMweK778of-IrWiuyktZ_bs14fNwCo9eknVyKo_bJuE2Bi0E4GDlh6RO1Kjtg2PsRdr6AXzNb_U2Hyg/s640/blogger-image-1806981319.jpg"></a></div><br></div><div>My little team, my niece and husband who walked it with me.</div><div><br></div><div>If you fancy sponsoring me for my efforts please pop over to www.virginmoneygiving.com/Kirstietancock1</div><div><br></div><div>Since I came home things haven't been great in all honest. My lung functions up and down but still pretty rubbish overall and I have had a few new medications added in to try to prevent these inflamation processes in my lungs. The side affects have been rough and I'm just hoping my body will start to adjust. </div><div><br></div><div>I feel like I'm not in my body any more, the muscle waste is very apparent in my legs, I feel thin and very withdrawn. I know I'm losing more weight with the high doses of prednisalone despite eating a fair good diet. My stomach is very bloated and uncomfortable. The exhaustion is relentless, mentally and physically. On top of this Stuart has had the week off and he ended up having a operation on Thursday night due to appendicitis. Stuart is never Ill and I hated seeing him in pain. No matter how minor we hate to see those we love struggle. He constantly told me to go home and leave him there as I was clearly struggling with my energy and breathing but I wanted to be there with him like he is for me. I did as much as I can. Today we're both resting, were a right pair! He's in pain and Iv had episodes of vomiting from my new meds along with severe shakes. Still were here together and that's what matters.</div><div><br></div><div>Along with this I had the extremely sad news that my friend Kate Hennessy passed yesterday. I haven't said anything about this as I currently can't find the words. I hope those who know her know its out of sadness that I can't seem to express this and I want my words to do her justice. </div><div><br></div><div>I know this is probably not the radiating positive blog people hope for, sometimes though all there is, is the truth. Things suck alot right now. I'm ok with everything in my mind and know I just need to conserve right now, in the hope for better days very soon.</div><div><br></div><div><br></div><div><br></div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com1tag:blogger.com,1999:blog-4891890415105870203.post-9868533314766016522016-09-08T15:31:00.001-07:002016-09-08T16:25:22.665-07:00Let's not write 2016 off yet.Updates haven't been coming in thick and fast because once I write one ready to upload I leave it a few days and everything changes again.<div><br></div><div>One minute things seem incredibly bleak and rubbish, the next things seem to going in the right direction and we're all celebrating but then we're back to things being all a little crap.</div><div><br></div><div>After my IV antibiotics and radiation therapy my lung function plummeted. If your on Facebook you'll know that things seemed really worrying my DRs were concerned I was nose diving in a similar pattern to my rejection before and that there weren't really any treatment options for my chronic rejection.</div><div><br></div><div>I had yet again another bronch and luckily they found something else slightly more treatable called organised pneumonia. This is a inflamitory response, a immune response to a previous infection or sign of something else going on. I was treated with high dose methyl pred which made me feel pretty awful. I put on 8kg of fluid in 3 days stopped peeing, my CF bowels shut down and I felt pretty rubbish for sometime. After 3 doses of methyl pred I went home on a higher dose of prednisalone in the hope that it would make my breathing easier and ease the inflammation caused my this organised pneumonia.</div><div><br></div><div>And it did! Slowly things improved a little and to be honest that was great because I was really struggling. I felt like my lung function was a lot lower than it was. In fact I was starting to get really scared by all the symptoms. I came back up to clinic last week to find out if I would be allowed on holiday on the 10th of September to Florida where we had been planning to go for a year and I had saved up all the money myself for me and Stuart to go from what I would say was a very successful year of business for me and a heck of a lot of hard work. My lung function was up to 60% I felt great and so happy to see the rise in the numbers and also being able to feel the benefits in my cardio at the gym. I had gone from 10minutes of level 1 feeling like I couldn't breathe at all to level 1-7 for 20 minutes. Obviously not my greatest but a huge benifit.</div><div><br></div><div>As I returned from clinic I started to really suffer with fatigue, I finished one of my lessons and sat in the car for over 30 minutes unable to move, eventually I drove to my mums where my step dad carried me out of the car, my breathing felt awful and I was purely exhausted. It came from no where. (no I haven't over done it that's not how this works)</div><div><br></div><div>There were several more occasions like this through the week and I knew something wasn't right. My lung function dropped on my spiro and I rang Harefield. I was already due to come up for a impedance study (a further test for reflux) they told me to stick to my plan and come to clinic. Wednesday I felt dire, I didn't even put make up on. That's really saying something for me, I love to cover my illness with a good foundation, eyeshadow and mascara but the energy to do that felt to much. To be honest just sitting in clinic felt to much.</div><div><br></div><div>I had all my tests done Wednesday including a CT and slept in the hospital accommodation overnight. I slept like a baby and I really needed that rest. Waking up feeling a little better I made my way to clinic. </div><div><br></div><div>My DR told me that actually there were a lot of changes on my CT, I'm not very good when it comes to X-rays and CTs I can't usually tell the difference in all honesty. This though was clear, it was like someone had stuck a cloudy day over my lungs. Huge white patches covering large areas. </div><div><br></div><div>We talked about every option I had, my holiday only looming this Saturday 2 days away. She asked me to go away and speak to my husband who was at work, my mum was with me. It was clear that if I am to think about surviving long term then I couldn't go. These patches currently seem reversible by what they can tell, if untreated or only partially treated could scar my lungs even more and make my chronic rejection much worse.</div><div><br></div><div>I went back in and said ok let's treats this. I'm going down for a bronchocopy tommorrow and having biopsies, this alone rules out flying on Saturday. Then they will decide on treatment from there. They are confident theses cloudy changes are viral and that treating them with more gross methyl pred and immuno globulins should be affective. Although they won't know 100% until they have done the bronch. </div><div><br></div><div>I feel gutted to say the least. I worked so hard for this holiday and with the last 6 months it's much needed. However I know now is not the time. I have fully comprehensive insurance but there seems to be some issues with my mum and step dad claiming there money back as they technically can still go and so could Stuart. It looks like we may only get the money back for myself as they have all said they couldn't go without me. That wasn't the idea. I really hope that when they have a bit more time to talk to insurance companies we can sort it all out. To be honest I'm not really in the mood to be messed around so if the insurance companies want to play assholes they picked the wrong girl to mess with. </div><div><br></div><div>My impedance test also came back positive so the DRs are going to talk to professor Hannah who did my fundo in 2013 and see if there's something else we can do. It seems there's a lot of confusion over my osophagus and fundoplication and I think that can come from being 2 very separate hospitals. I hope they can finally reach a conclusion that will make sure my lungs are 100% safe from reflux.</div><div><br></div><div>A lot of people have said 2016 hasn't been a good year for me, that I can't seem to catch a break. I can see where that's coming from but I also hate to tar a whole year as a bad one. Every year is so precious with out my donors none of them would have Been possible, so although this year has been a little rough Im still determined to think of all the good points along the way and there have been some really good points. Pole theatre, holiday with my husband, passing my aerial silks course, growing my business and really fully enjoying it, starting to teach aerial hoop, feeling successful and proud of myself. Just a few of the things 2016 have bought and the year is not over yet, I still plan to make the positives over ride the negatives and have some amazing pole workshops, privates with amazing pole instructors that Iv booked, a little weekend get away with Stuart's side of the family, beauty unseen, raising lots of money for this amazing hospital and a trip up to Scotland at Christmas to see one of my besties (who came down to see me last week). </div><div><br></div><div><br></div><div>So for now this is my update. Fingers crossed that whatever's going on is sorted and my Chronic rejection is stable. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi917VqDFl9CNvgNiLODwoYGfWThvj-Q3nUNwc5nlDfCjUN7rFdWN7Nhvs8JYkJors9l9Z36-5eCUWpyj-HFzGki_BqWwrjSJcnc2ekejfuvNaYHG_HV2khsf_jUfjCRF4VcP3w7U6xEBs/s640/blogger-image-1256387970.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi917VqDFl9CNvgNiLODwoYGfWThvj-Q3nUNwc5nlDfCjUN7rFdWN7Nhvs8JYkJors9l9Z36-5eCUWpyj-HFzGki_BqWwrjSJcnc2ekejfuvNaYHG_HV2khsf_jUfjCRF4VcP3w7U6xEBs/s640/blogger-image-1256387970.jpg"></a></div>Here's my picture for national transplant week as part of live life give life campaign and NHSBT campaign. My piece of paper says "I'm grateful to my donors for all the amazing moments with my family and all the amazing experiences since #TurnAnEndingIntoABeginning"</div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com2tag:blogger.com,1999:blog-4891890415105870203.post-53139956915948990582016-07-28T05:07:00.001-07:002016-07-28T05:07:40.537-07:00Scrambled eggHaving this chronic rejection diagnosis was a real kicker. Despite all the positivity there are moments during my treatment when I honestly sat and thought this isn't going to work. This is it. I'm only human right? There are always moments of doubt, these moments are well justified. How can I have faith in something that didn't work for me before? <div><br></div><div>Radiation described to me the first time as a hammer to crack a egg. Well I was left truly scrambled! The side affects were awful and I was left feeling very ill indeed. Just over a week ago I was having crappy temperatures, full of flem, very breathless and generally feeling weak and tired. I had come home from Harefield after finishing radiation, thinking I could just jump back to life where I left off and that wasn't the case. A couple days later I went into Exeter hospital and start Iv antibiotics. They worked extremely quickly in making me feel much better! </div><div><br></div><div>I'm now back home and finishing of Iv antibiotics. Iv taught a few lessons but there is much rest inbetween as the radiation side affects still linger. Iv had over a month of doing little to nothing. During the couple of weeks of radiation I spent with my head in a sick bowl or asleep. I lost nearly a stone of muscle and my legs to me looked thin and weak. My legs are always one of my body hang ups, when my body's working hard it eats my leg and ass muscle first and I end up with pancake butt. This reminds me of when I had painfully thin legs and I had to learn to walk.</div><div><br></div><div>So the next few months for me are all about wellbeing. Mental and physical. Rest + exercise + good nutrition + work + hubby time = a well balanced happy Kirstie.</div><div><br></div><div>I still don't know if radiation has worked to hault the chronic rejection. My lung function is still going down but it takes some time to plateau. I'm told it won't go up but just stabilise if it's worked but Iv also heard some people did get some lung function back. </div><div><br></div><div>Now I'm back home in feeling much more like me, happy, hopeful and looking forward to a holiday in Florida in September which my DR gave me the all clear to still go ahead with.</div><div><br></div><div><br></div><div><div><div><br></div></div></div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com0tag:blogger.com,1999:blog-4891890415105870203.post-3584586329565321682016-06-23T00:58:00.001-07:002016-06-23T00:58:41.329-07:00Pole Theatre<div>I</div><div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Now the glitter has settle, the costume has been placed neatly away until next time, the shimmers and sparkles are back in there box, the fake tan, well that's staying put for the summer but my mind has come back down from cloud 9 I'm ready to write about Pole Theatre.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">On the 21st of May my heart raced constantly, my mind whirled, my stomach was doing flips as I was ready to get on stage. In my costume made especially for me sparkling a pair of lungs by Fi Bourke I was there to tell my story, a story you all know well and I have told in many ways before, through word, through documentary, through writing but this time it was a way in which I felt like I was ment to do. I would twist and turn my body around the pole while one republic I lived played. I was there to act, to dance, to feel my story, to lay it bare for everyone to watch while I felt most at home but almost stripped back to my bare sole for everyone to look inside to see, to feel my emotions. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">As I stood there at the edge of the stage trying to compose myself, to catch my breath as the nerves had simply knocked it from me and then Michelle shimmy starts to speak, the toned, tanned, Australia pole goddess was talking to me. I don't know what it is about the Australian pole ladies but they are something simply to be in awe of, I had a similar experience when I met my idiol felix not just any Australian goddess she is the goddess of goddesses. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Michelle was getting ready to introduce me on stage and she read my bio, it was short and sweet explaining my story, my life with cystic fibrosis and receiving a double lung transplant and chronic rejection I didn't include my second transplant in the bio, my performance would tell that. She exclaimed 'you've had a double lung transplant' I replied with ' 'yes 2 actually' gobsmacked she asked how I was, ah here's the thing, I'm wasn't actually doing so well, a whole month and my lung function has been going down a fair way, I have been up and down to Harefield for tests and medication but there is still no exact diagnosis at the time. Now we all know I'm in Chronic rejection.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">How do you explain that to Michelle shimmy, well I don't really know what I said, I think I mumbled and bumbled until my husband and coach Amy told me I was starting to get my self panicked and I needed to calm down. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Yep I was about to step on stage with my precious lungs that were struggling and ask them to help me fly. I knew the possibilities were stacked against me, I knew that I might step on that stage and have to stop because I couldn't catch my breath, that I would then have to stumble off in complete embarrassment and horror because this stage was for semi pro, lots of people had entered, lots of people hadn't got through. Only 6 were in my category, there were international competitors to. This was big, but if I didn't go out, if I didn't try, this opportunity might never come again and then I would kick myself. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">It was time. I stepped up checked the poles and got to my start position on the floor. My music felt so quiet, I know It was loud but my ears had that bubble feeling, I just couldn't hear it. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrW8TLAOZ_6jL8YA0ggvweleBu4vv3Gc_UN8nxNwiqxTPvf512thcEIWnBTtmvD7Dow0XmKYhtk_VHoA6AJFfCW0Gk9l7A7gsT30hgR1334_uK3msO0GuM724tTnVxIqBbGM__7l7c8E8/s640/blogger-image-1563030026.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrW8TLAOZ_6jL8YA0ggvweleBu4vv3Gc_UN8nxNwiqxTPvf512thcEIWnBTtmvD7Dow0XmKYhtk_VHoA6AJFfCW0Gk9l7A7gsT30hgR1334_uK3msO0GuM724tTnVxIqBbGM__7l7c8E8/s640/blogger-image-1563030026.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibVO39Kmz9yvjSKAzadqiFaFY2fdUMbFu8m1zrUxPiDxPF96RCaK0UnxGjszXTP9tzs1t4Pyz-4JyAh9RiFZVcUEZVY3zD0MKakMta6N6jAh_k4242iwVALvCNwVsLkEGpl0oUfcP8fjs/s640/blogger-image--77810718.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibVO39Kmz9yvjSKAzadqiFaFY2fdUMbFu8m1zrUxPiDxPF96RCaK0UnxGjszXTP9tzs1t4Pyz-4JyAh9RiFZVcUEZVY3zD0MKakMta6N6jAh_k4242iwVALvCNwVsLkEGpl0oUfcP8fjs/s640/blogger-image--77810718.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">My husband stepped on to the stage with me and we performed our piece together. <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlEQU2x-LNXwqad_9Ee90A8Kjuj6Ux7r4j6aYgTB6m55yLM3eWrEJ7HOIcSzQKX-yzeDxFk1AaEgERbB5OKrec7unORrtFjzZWqEdTZyJZrgyL_P8-BugAmXSgeDRqKyhjILUoeP3wWRg/s640/blogger-image-2023142429.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlEQU2x-LNXwqad_9Ee90A8Kjuj6Ux7r4j6aYgTB6m55yLM3eWrEJ7HOIcSzQKX-yzeDxFk1AaEgERbB5OKrec7unORrtFjzZWqEdTZyJZrgyL_P8-BugAmXSgeDRqKyhjILUoeP3wWRg/s640/blogger-image-2023142429.jpg"></a></div></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUkpuP7NIyLHfYoGR7GrCuZvprKVwwiqhOAf4Y_j8BecyvZus4hxCR5zHu9_Jh4V8o1Ssl-_SssSRjeGlQ_6azEJ3Lz60xUFmsiQeVo1z0ckKBoFGStyTfHgWLK6MTYhyphenhyphenJdlxGwjfhT74/s640/blogger-image--851084031.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUkpuP7NIyLHfYoGR7GrCuZvprKVwwiqhOAf4Y_j8BecyvZus4hxCR5zHu9_Jh4V8o1Ssl-_SssSRjeGlQ_6azEJ3Lz60xUFmsiQeVo1z0ckKBoFGStyTfHgWLK6MTYhyphenhyphenJdlxGwjfhT74/s640/blogger-image--851084031.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBfs4xJYGqR5pVMbi02yh49w4CFCyNRBxHpbJa3VHu7vTgn-EsaIpc5Jx3ebY54_nMaVAEyqI6Dn56j2kOM8s8W66bGO6THgQBUYtGyyjT4GfEBLf-VZWcKNxp6H2s0rr9fJwVBo58ECc/s640/blogger-image--301449830.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBfs4xJYGqR5pVMbi02yh49w4CFCyNRBxHpbJa3VHu7vTgn-EsaIpc5Jx3ebY54_nMaVAEyqI6Dn56j2kOM8s8W66bGO6THgQBUYtGyyjT4GfEBLf-VZWcKNxp6H2s0rr9fJwVBo58ECc/s640/blogger-image--301449830.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilCvsPaYBZr8KSKLjK4Nz1Kuadl0H0pC6ioXkjCoEQEbujFfq-pqVR7LPgfbu9yijfAd5KGACeHpt3tZkYIW_9jAzF_2dUhzrmVr1kQnOQFOAPYDFXQBUcSYuHAQdZuILTyqcp2onFsgw/s640/blogger-image-1602875654.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilCvsPaYBZr8KSKLjK4Nz1Kuadl0H0pC6ioXkjCoEQEbujFfq-pqVR7LPgfbu9yijfAd5KGACeHpt3tZkYIW_9jAzF_2dUhzrmVr1kQnOQFOAPYDFXQBUcSYuHAQdZuILTyqcp2onFsgw/s640/blogger-image-1602875654.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">My first combo Felt great, I Beamed in my first splits trick and looked into my audience capturing the judges eyes.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQqM2u7j8dRujA8WqD6_rRz23uu0sp2m33qecdtZfDkYo7cY8rCECkEL_OXJ3cbXiBwdPzun26YqkZijloMzI9SE17uRRTe4iRiU4Upap3lnEB-CNB87BXDaYVNJCd-lz-5IsPkBpE8bE/s640/blogger-image-1189044907.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQqM2u7j8dRujA8WqD6_rRz23uu0sp2m33qecdtZfDkYo7cY8rCECkEL_OXJ3cbXiBwdPzun26YqkZijloMzI9SE17uRRTe4iRiU4Upap3lnEB-CNB87BXDaYVNJCd-lz-5IsPkBpE8bE/s640/blogger-image-1189044907.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"> I removed my hospital gown bejewelled with black lungs and showed my glistening costume under neath. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipXqCw5hfQ2ybr19FMBapbUCGNNYZlGUzRV85wRtMz-yiSuuvt5rstpa9EWTOVmXxL2EkAD7BCFBd7JG05NbW11KhssIXDZ4mbTVZiqYF0-rcmcEHNvsvMomh1oToPXaM7KdxEdFnGr2U/s640/blogger-image-1717767701.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipXqCw5hfQ2ybr19FMBapbUCGNNYZlGUzRV85wRtMz-yiSuuvt5rstpa9EWTOVmXxL2EkAD7BCFBd7JG05NbW11KhssIXDZ4mbTVZiqYF0-rcmcEHNvsvMomh1oToPXaM7KdxEdFnGr2U/s640/blogger-image-1717767701.jpg"></a></div></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIDf2amNy4tW8kNBpG-N-hZ1S-1A_RhCbKQi5VgpcKNzFvQAIe6zs-cWIbiy3fdjH6BCAy9wYZaZQq83J3uNffvgIVXBnRJnaH5k_LOVelGh4jg3X17s-UjmgqJENJsFn54LaOLwc5nJk/s640/blogger-image--852668417.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIDf2amNy4tW8kNBpG-N-hZ1S-1A_RhCbKQi5VgpcKNzFvQAIe6zs-cWIbiy3fdjH6BCAy9wYZaZQq83J3uNffvgIVXBnRJnaH5k_LOVelGh4jg3X17s-UjmgqJENJsFn54LaOLwc5nJk/s640/blogger-image--852668417.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Suddenly I felt like all the air in the room was gone, I climbed for the second combo and failed on the invert, my muscle had run out of oxygen and failed. I styled it out and picked up what I could. I took precious moments to gain some oxygen back, to breathe. Had I been to fast and used it all up or were my lungs just not up for it this day. I carried on determined that I must get through. I had to do it. It came to my last combo, I climbed the pole held for my bendy elbow hold and made my way to eagle. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG4HrrJToX8AGaahlrqpFbKWWJpI57p0govf3O9YpjJFFGrMap-3t8W1El9ii2KJCULZtjJwpbjcPs1eA211CfhVJS17J4-C5eAVe23JeiaucWmyTbtE1gI5bcIyDr4SAywts9aF8QoBc/s640/blogger-image--982611871.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG4HrrJToX8AGaahlrqpFbKWWJpI57p0govf3O9YpjJFFGrMap-3t8W1El9ii2KJCULZtjJwpbjcPs1eA211CfhVJS17J4-C5eAVe23JeiaucWmyTbtE1gI5bcIyDr4SAywts9aF8QoBc/s640/blogger-image--982611871.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Sliding down the Pole I made my last connection point with the audience and Stuart scooped me into his arms. We walked to the back of the stage, he asked me if I was ready to take my bow.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxIrrFZ2cA-SZ_xJ_5h3YD2D96QUgkHvWu32geJGxVAoBccdDYv76ARbdH0ptr__JqgaAlNYyXgYR3I8T6m5G8_Ht-tqCy37LDem9c5-HHvH0BpPTVi5PCg-L35BMklgLnwFTi0eWPBtc/s640/blogger-image-1243269998.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxIrrFZ2cA-SZ_xJ_5h3YD2D96QUgkHvWu32geJGxVAoBccdDYv76ARbdH0ptr__JqgaAlNYyXgYR3I8T6m5G8_Ht-tqCy37LDem9c5-HHvH0BpPTVi5PCg-L35BMklgLnwFTi0eWPBtc/s640/blogger-image-1243269998.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"> See we choreographed that scoop for one reason because I know I wouldn't be able to stand any longer. I whispered no I'm not ready, as I clung trying to breathe, he said I had to be put down now. We turned and made our bow. I walked off and made my way to the floor where Sam my friend and fellow perform placed my head on something softer, Stuart hoovered and Amy held my hand. Stuart undid my costume as it was now to tight to breathe with my struggling lungs. I don't know how long I stayed on the floor, it felt like a long time. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">At first I felt disappointed I wanted it to be perfect but then when I saw my video back suddenly I felt nothing but pride. It might not have been my best ever but god damn it I did it and If I could, I would do it again and again. I would choose to do it perfect but if not I would do this exact performance again and again.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Here's the link for you to all watch</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><a href="https://www.facebook.com/812644042113499/videos/1291838504194048/">https://www.facebook.com/812644042113499/videos/1291838504194048/</a></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Next thing I knew I was front page of the express and echo they had shared my video and over the 2 videos i accumulated 15k views. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><a href="http://m.exeterexpressandecho.co.uk/Health-problems-return-times-double-lung/story-29315005-detail/story.html">http://m.exeterexpressandecho.co.uk/Health-problems-return-times-double-lung/story-29315005-detail/story.html</a></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So now I sit here reminiscing of my competition, I didn't win the competition but for me a personal victory took place, I did have another competition in a few weeks but my radiation has been bought forward and I start today. In my mind I wanted to believe that I could do the competition, but my lungs are very much up and down and all over the place. With the radiation starting today by the date of the comp I should be neutropenic which means no immune system and barrier nursed.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Part of me wanted to do this comp because I don't know if I'll ever be able to do one again. Radiation will hopefully stabilise me but I won't gain back what Iv lost because chronic rejection scars the lungs. It also causes air trapping which I'm really feeling. Im determined to stabilise then build strength in my lungs to hopefully enable me to do so. It won't be easy but nothing worth doing ever was. At the moment I'm keeping active as possible and teaching when I can. I have to keep using my lungs so that they don't decline in fitness Aswell as lung function. It's the only way I know how to do this.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Pr4LKYFSZakVZW4VO-IddetpkCw3w_r0Kz3UUB7mPMCvCABANhZOyz5YvXR5tFaTWsIReWzjrv3E-PkgYkUHYrOAA9DE6ZrEmDUZgn04ZKW7EBcGJ4pmffFMc9qAigBMQuEqD7E6sJM/s640/blogger-image-1022590994.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Pr4LKYFSZakVZW4VO-IddetpkCw3w_r0Kz3UUB7mPMCvCABANhZOyz5YvXR5tFaTWsIReWzjrv3E-PkgYkUHYrOAA9DE6ZrEmDUZgn04ZKW7EBcGJ4pmffFMc9qAigBMQuEqD7E6sJM/s640/blogger-image-1022590994.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div></div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com1tag:blogger.com,1999:blog-4891890415105870203.post-58249970290396814912016-06-17T02:15:00.001-07:002016-06-17T02:15:16.164-07:00Chronic rejection- the fight is on.<div><br></div><span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; background-color: rgba(255, 255, 255, 0);">So I promised more posts about training as a spoonie and I promise there will indeed be! In fact there is a mass of scribbles that currently need to be deciphered so you can all understand my jibber jabber. But I have a couple of personal blog to write...</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">One about my amazing experience at Pole theatre Uk and the other which I wanted to share with you all today.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">For those of you who follow me on social media sites you will already know. Here it is for those who don't along with some more thoughts and feelings.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">See my lung function has been dropping over the last 2 months, it is down by more then a litre. Sounds a lot, that's because it is. Iv been back and forth to the hospital where I am currently. Iv had several bronchs and finally Wednesday came. Crunch day. I knew they had to tell me what was wrong then and there it was. I'm starting radiation therapy. I asked if there was diagnosis with this. O.B otherwise Chronic Rejection.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I held myself together and said ok, thinking of everything that had happened before but also calmly reminding myself that not all chronic is the same and that actually although I had had a large drop in lung function it was not as much or as quick. My lungs were at the best possible lung function they could be before this, so my lung function is still relatively high, that means we have one thing we didn't have before. Time. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I am strong mentally and physically and in a very pragmatic place. I'm looking at all the research, planning how to manage my business and finance. My biggest worry was telling everyone. Telling my husband, my nan, my sibling and friends. Mostly I felt sorry, sorry they would have to hear this scary news and face this battle again. I hate them being upset and it's what hurt the most. I tried to tell them in the least injuring way possible, reminding them that this is a different situation and that I'm going to beat this but I knew once the words chronic rejection their brains would go fuzzy and anything else I said would be like a distant echo. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So I'm to start radiation therapy as soon as possible, today I go home while I wait for my appointments. For me obviously I'd rather start immediately but that's not possible so I'm going to use this time at home to get organised for when I come back up. Try to see all my friends who are now fearful that they might not see me again and remind them they aren't getting rid of me that easily!!!</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So Iv always wanted to raise more money for Harefiekd hospital with all they've done for me and I decided that I might Aswell crack on with this so I created a virgin money giving site. This is for all my friends family who wish to do fundraisers to put all the money in one place and for those who have asked if they can donate money to show support can now do so. I appreciate everyone's ongoing support, if anyone would like to raise money for Harefield then please feel free to email me kirstietancock@icloud.com</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">http://uk.virginmoneygiving.com/KirstieTancock1</span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Here's some pictures from my stay, trips out with friends and time with my hubby as we celebrated 5years of marriage yesterday.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); 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margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_S9ZdLnchynVj5yV4Qqt-yD0dvQXgvWa0Asp4yBik_xgbITLybyb8R02UC9pO5CPL_tEtGXEX0LbN_6R42_4xzYHl4hql4OTZQMaVypN8Y6S_F-zwbF1eOiE2H3NoV0RO_r_6np-kfAs/s640/blogger-image--1070096893.jpg"></a></div><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com2tag:blogger.com,1999:blog-4891890415105870203.post-18566944035260911962016-03-21T08:59:00.003-07:002016-03-22T02:30:15.694-07:00Training when your a spoonie<div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
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<u>Training when you're a Spoonie<o:p></o:p></u></div>
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What is a Spoonie? Well here's a little definition from the urban dictionary which sort of explains it, in a short and sweet fashion.<o:p></o:p></div>
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<i>"Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion... sometimes having an abundance, other times coming up short."<o:p></o:p></i></div>
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So I have lived with Cystic Fibrosis all my life, in a way a curse but it makes me a pro at measuring my spoons and spreading them evenly to do all the things I want to do - I am a proud Spoonie! I will be blogging about this over the next few posts, writing all my thoughts in one chunk felt a little too full on!<o:p></o:p></div>
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I often get asked by others with medical conditions/chronic illness how I train and get better at pole with all my medical constraints - how do I spread my spoons? Some of these people are others who have Cystic Fibrosis like me and may or may not be post-transplant, others are from the pole community who have other illnesses such as Fibromyalgia and other nasty spoon juggling conditions. Now, I'm not saying I know everything about training with a chronic condition, I certainly don't and a lot of it is trial and error. What I do know is that I have great respect for those of you who are training with a chronic illness - I am constantly learning from you all.<o:p></o:p></div>
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Cystic Fibrosis is a disease that affects the lungs which is why I've had 2 double lung transplants, you probably already know that if you're reading this, but what you might not know is it actually effects a lot of my other main organs causing dysfunction in some and failure in others. My digestive system doesn't work like it should and I suffer a lot of pain on a weekly basis through blockages; my pancreas is practically non-functional, meaning I don't send out enzymes for breaking down fat from food or absorbing vital calories for energy; I also don't deliver insulin to absorb, store and utilise the energy from sugar making me a Type 1 Diabetic and thus dependant on insulin injections, my liver is also effected. Aside from the direct implications of the Cystic Fibrosis, I also have post-transplant related complications - in order to make sure that my body does not reject my transplanted lungs, I am immune-suppressed which means, unfortunately, I catch everything and this makes me poorly regularly; I'm post menopause from radiation therapy and so have regular hormone problems which lead to fatigue and last but certainly not least, I suffer with juvenile chronic arthritis which although is not as bad as it has been previously, does cause pain regularly.<o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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So, these are the things that make me a Spoonie, how I manage this - well that's the hard one! Notably, my training really varies week-to-week, depending on how much I teach, how well I feel and how much time I have. Whilst I aim to train 3 times a week, every week, it would not be truthful or realistic for me to advertise that. Some weeks I'm lucky to even survive all the lessons I teach, let alone my personal training. But I've listed below, some of techniques I use to aid in my training.<o:p></o:p></div>
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1.) I have a coach, I know I'm an instructor and can, theoretically, train myself but when you have little energy having someone there to support and guide you is an incredible tool. Amy Williams is my coach, I think it's really important to pick the right person. She is there to break down the new moves for me so I do not have to spend time figuring them out (time which I always have to utilise as effectively as possible). She also motivates me in a positive way and keeps me in check when I'm feeling low. Basically, Amy stops me spiralling into self-pity, something that inevitably just tires me more. I picked her firstly, because I liked her style of performance but in all honesty I lucked out, she has a wealth of knowledge which I feed from and most importantly the right attitude to help me in the ways I need with her caring, understanding yet no bullshit attitude - I don't have time for bullshit in my life. Don't be afraid to change coaches/instructors if it's not the right fit! <span style="font-size: 11pt;"> </span></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><div class="separator" style="clear: both;"> </div><div class="separator" style="clear: both;"><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWRThTzE4zP0HGukjIO3uFLxJG6IT4J7u1NpXPKDt8wUu5tK6pAALx77X3mFso4qXDTn7LucUD0ibpBfwlc6mRb6h_Fzh8EBbL_ErOmA3E9JO8ISvGAfiqnrDBGA0fVcn0x0fz4Lt9Wvo/s640/blogger-image--716305583.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWRThTzE4zP0HGukjIO3uFLxJG6IT4J7u1NpXPKDt8wUu5tK6pAALx77X3mFso4qXDTn7LucUD0ibpBfwlc6mRb6h_Fzh8EBbL_ErOmA3E9JO8ISvGAfiqnrDBGA0fVcn0x0fz4Lt9Wvo/s640/blogger-image--716305583.jpg"></a></div> <div class="separator" style="clear: both;"><br></div></div></div>
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2.) I warm up for a long time, some days I may spend 1-2 hours gently warming the body. This ensures that I reserve energy for the actual task but also gets me moving and ready for it at the same time.<o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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3.) Don't overdo it. Sometimes, I may only train for 30 minutes - I really listen to my body and if it's not feeling it I know I'm only going to suffer and not achieve a lot. And often 30 mins, with a clear goal, is enough to pack a punch. <o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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4.) I'm constantly making new goals - researching what I want to train, this way I know that the time I spend actually training won't be wasted on figuring out what I want to achieve. I have a list of moves and some are for intense training days and others are for no energy days when I know I need to get it done and rest.<o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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5.) I watch and watch and watch videos. I know that I'm a visual learner and most of the time I can learn something just by watching it and emulating it at a later date. I don't think you can ever get to much inspiration. So just sit down and watch when you're not feeing up to it yourself, sometimes I find that this then gives me the mental energy to train because mental energy is just as important as physical energy. I always save the links to things (NB. on Facebook you can save the link to a video in the top right corner where the little down arrow is. On Instagram you can copy and paste links which you can then save somewhere for later reference - I save mine in the notes app on my phone.)<o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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6.) I vary my training - just because I'm training <i>for</i> pole doesn't always mean I train pole. Some days I know my lungs aren't up to dancing around, so I stretch and work my flexibility and contortion instead. Days when my tummy feels rubbish and sore I might go to the gym and train biceps and triceps in a way that doesn't involve to much core activation, as I know my core just isn't up for it. When my joints hurt it’s mostly floor work with little to no flexibility.<o:p></o:p></div>
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Sometimes, you need to recognise that you aren't up for training <b>at all</b>. This is a tough one to call, but maybe the most important part of this blog. You may feel as though making the decision not to train is admitting defeat, but in actual fact it's just recognising that this is another part of your training. I call this the “TLC” part - where you reset and prepare for the next physical part. Signs and symptoms that you need to rest are: A.) Complete Body Ache, if your body is starting to ache all over it may be sending out warning signs that it has had enough. When your body becomes stressed it releases hormones such as Cortisol, which can lead to lower immunity, bone density, increased weight gain, blood pressure, cholesterol and heart disease to name a few. These will greatly impact your future ability to train. B.)Temperatures are a no no! If you’re starting to burn up, stay at home! C.) Pain From Your Condition, I'm all up for pushing the barriers of pain but there are some pains we have to admit is too much and acknowledge that you will do yourself harm should you try to train like through it. This really is a judgement call. (NB. I will be going more in depth into pain management in another blog, looking at how to train with it and when not to.)<o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt; text-indent: 36pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt; text-indent: 36pt;"><br></div>
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7.) Now we've established that rest is part of training, the questions becomes ‘what shall we do in that rest time that can benefit us?’ The answer, TLC. I look at biomechanics and work with that: body parts that might be sore - roll them out to release muscles, use trigger point therapy and just think about maintenance for the body. A massage from my sports masseur, Heather, is always a great way to help ease those muscles (she’s a genius!). Often, something as simple as a hot bath, or a splash around in a pool is just the ticket. Alternatively, try going for a little walk to clear your mind – effectively, we are looking at things that are good for both the body and the soul. Sometimes training whilst being a Spoonie means being a problem solver - if this body part isn't functioning today, what can I do with the rest of me that is? Remember to love yourself and the body you work hard and that works hard for you, you may feel rather angry at it sometimes because it doesn't function normally, but it also does amazing things for you every day. How can you expect it to carry on performing if you don't take the time to reward, nourish and love it?<o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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8.) Finally, fuel your body properly. Too often people focus more on weight loss than on health. Weight loss can, of course, be part of making a healthier you, but it should not be the main goal. I will be posting another blog, later, explaining what and how to nourish your body with the right foods. <o:p></o:p></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div>
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I hope that the first instalment of this series of blogs has given you some food for thought. I should just like to end on one last message: just because you have physical limits doesn't mean you can't push past them and achieve even your greatest dreams. You got this far, why can't you go further</div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><br></div><div class="MsoPlainText" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0cm 0cm 0.0001pt;"><div class="separator" style="clear: both;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6gwOJ-8Boi1xmyP1nC65iYZReY8IM-9yxl_zbVC_LJQ8Fh11L3vazFQfg6DC9rppyfWB5aKTg1XJPqetfNOeLNQXiMxvzPAM-YUXdqOG3u5TGUY46QnnwwXflUhRVKXFeoTyZC2hA4iU/s640/blogger-image--2016790416.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6gwOJ-8Boi1xmyP1nC65iYZReY8IM-9yxl_zbVC_LJQ8Fh11L3vazFQfg6DC9rppyfWB5aKTg1XJPqetfNOeLNQXiMxvzPAM-YUXdqOG3u5TGUY46QnnwwXflUhRVKXFeoTyZC2hA4iU/s640/blogger-image--2016790416.jpg"></a></div>Photo by phaze photography </div>
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Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com3tag:blogger.com,1999:blog-4891890415105870203.post-73746064494747678042015-12-14T09:43:00.001-08:002015-12-14T09:43:46.234-08:00Anything worth having was never easy<div class="separator" style="clear: both;"><br></div>As I mentioned I'm currently training my video entry for pole theatre, tomorrow I <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">record it and send it off all before 12 midday. </span><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The video entry is judged and then it is decided if I get to compete at semi pro umoung 5 others in drama category. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">This week I have not been 100% I have had temperatures and tiredness,nothing all that serious but it has left me feeling weak and a little disheartened. Although my lung function is great and I can do a lot, the one thing I really struggle with is doing a whole routine gracefully, maintaining strength through out while the whole time I am heaving for breath. I'm not saying I struggle with breathlessness because on the whole I don't, I can put most people to the test but I cannot seem to deal with this breathless feeling during routines. I guess I have to consider if all I have been through I really can do what I want? Am I just dreaming the unimaginable, reaching to far? Bound to fail all because I dreamed a little to much. </span><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">That feeling of dizziness, while your heart is pounding in your chest, while your lungs feel empty, its scary. I know why sometimes people post transplant don't want to exercise, because why would you want to feel that feeling you felt so close to death even if it is not a touch on what it was before and not the same thing, feeling remotely like that your body panics.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I wonder if after everything my body is capable of what I want to do? I really want to thing so, but after running the routine thought for the 5 th time, the lifts look weak and heavey if you make them and sometimes you just can't. The feelings of failure can become a little to daunting.</span></div></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I don't want to run and hid from this, I don't want to turn my back on this dream, any thing worth having was never easy, right? Well this is definatly not easy, so it must be really worth it.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9WWfSU1h0x5hMp6_ft2-2Lgf9DgY2Z1ux-IiieoMIcLn7DeRtHGIR2OrmjDEDrVkL057LKel0sO2918rxAzOI9dv6Ifa8RqtXgQL6fliqd1xHq4vXjVI0j4OQh48hKOCyJU2N73mLQOQ/s640/blogger-image--1403496733.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9WWfSU1h0x5hMp6_ft2-2Lgf9DgY2Z1ux-IiieoMIcLn7DeRtHGIR2OrmjDEDrVkL057LKel0sO2918rxAzOI9dv6Ifa8RqtXgQL6fliqd1xHq4vXjVI0j4OQh48hKOCyJU2N73mLQOQ/s640/blogger-image--1403496733.jpg"></a></div><div class="separator" style="clear: both;">My new logo</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTOiFdXQs7ntK3UP3qC7Y53QXP2TJeRkWOVs1MaR3GjGTq0MV5TjVb_Ysl745cOjfIFVOb2c5O8bioE6ELYJxxwOW6JhTA1RjrGb9Kc9qxKGaxCG_LdAiHfpMoVscyI83L16sIRY9EJQ/s640/blogger-image--1412892919.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTOiFdXQs7ntK3UP3qC7Y53QXP2TJeRkWOVs1MaR3GjGTq0MV5TjVb_Ysl745cOjfIFVOb2c5O8bioE6ELYJxxwOW6JhTA1RjrGb9Kc9qxKGaxCG_LdAiHfpMoVscyI83L16sIRY9EJQ/s640/blogger-image--1412892919.jpg"></a></div></div>My favourite pole move Pegasus.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com0tag:blogger.com,1999:blog-4891890415105870203.post-15032083962971119602015-11-29T15:35:00.000-08:002015-11-29T16:01:49.979-08:00All the wonder that's to be had<p style="margin: 0px;"><br></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It has been a long time. Most of my posts start like that but to me that means life has been good.</span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">My last blog was about starting my competitive career in pole. I'm happy to say it went extremely well. I loved every minute and have 2 competitions lined up for next year! Pole theatre and Bristol pole championship. Pole theatre is the big comp and I have a amazing routine lined up which I am so excited about it, but I shall leave you all to wait and see. My dream is still to win in my category semi pro, is it realistic? Yes I think so, I wrote a post recently about a competition that has a disabled category and whether that would be the right comp for me. See it's hard to say but at the moment I am the most healthiest I have ever been, is that to say I am normal, no. I have rough days and days when I can't train as I would like and that may put me at a disadvantage but right now I feel semi pro is the place for me and if I win I will go up to professional. One day I hope to engage a international stage, to stand there and say I am worthy, for all I have been through I have trained hard and raised to the challenge. That day will be a true fingers up to cystic fibrosis to me.</span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg9dIwb3WI3E_Jt5VvpyD5hPRXUDierwgrjhO0z6brCER5vieSWo_9EWGJ6r2MxQ2sW8k7orjM07hqKQKZeefLa836dfPllLDL3E8te7PBbxeMqlfySqt5rjZ4e3AvxIUyCratKLQYlX4/s640/blogger-image-629357646.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg9dIwb3WI3E_Jt5VvpyD5hPRXUDierwgrjhO0z6brCER5vieSWo_9EWGJ6r2MxQ2sW8k7orjM07hqKQKZeefLa836dfPllLDL3E8te7PBbxeMqlfySqt5rjZ4e3AvxIUyCratKLQYlX4/s640/blogger-image-629357646.jpg"></a></div><br><p></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I often worry that time is ticking away to fast and that it may run out all to quickly, for me I am constantly pushing harder and faster to do everything on my list, but every time I knock one thing off 2 take its place. The truth is when it comes down to it I will never be ready. I will always have goals and dreams but the main thing is At least I am ticking them off and the more that arise is just a sign that I have truly tasted life and been inticed by all its wonders wanting to experience everything and not leave one thing untouched, one stone unturned. Before when there were less dreams that was because I didn't know there was so much wonder to be had. </span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So let me continue to tell you of all the wonder that has been had and all the wonder yet to come, instead of writing silly metaphors and feelings of being bloated with pride and happiness. </span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So I have been on 2 holidays, one with my mum to Spain in June where we cycled everywhere on 2 rather simple bikes, soaked in salt baths and spent much time relaxing.</span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-R38CopU-t2zsqPr-jas_Gb3IZUqXFg7w0YtBfPti_cYJSZZpAc-TXStMTO9duhuyS2HyV3KUD7hc3mzBuv75xdowJfkcOYtC26QUiq4kpWE3ovNokwg630y-CS_fcWECsJP41h5wbdI/s640/blogger-image--652173921.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-R38CopU-t2zsqPr-jas_Gb3IZUqXFg7w0YtBfPti_cYJSZZpAc-TXStMTO9duhuyS2HyV3KUD7hc3mzBuv75xdowJfkcOYtC26QUiq4kpWE3ovNokwg630y-CS_fcWECsJP41h5wbdI/s640/blogger-image--652173921.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFkVmVlXOetU1Ab9KG9TadSDu8ufKlCt1BmDQ16yPmQSemCCXbDi0VCtGl66XKfnZMuRFI_qd37wbg-shPsnFCNECBOgat0Cphu2aVaSm0w5N-xwsSyR6Dnhtc8X1upFjCLxynIgMieaw/s640/blogger-image--670125596.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFkVmVlXOetU1Ab9KG9TadSDu8ufKlCt1BmDQ16yPmQSemCCXbDi0VCtGl66XKfnZMuRFI_qd37wbg-shPsnFCNECBOgat0Cphu2aVaSm0w5N-xwsSyR6Dnhtc8X1upFjCLxynIgMieaw/s640/blogger-image--670125596.jpg"></a></div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmugHI5O2DMRcfKW8dqe9PTVT1ZAbs8kdYCJFONUiE77pWCyFQtKnWmHy3j1X9Pj3Ob4YnkktDxPMTNly4hG-Za0Ihy1fKSZym9m6q-D1l4AEXZKVTSwNChCIYnhL3IzJK4eSkcx3RZVw/s640/blogger-image-601612898.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmugHI5O2DMRcfKW8dqe9PTVT1ZAbs8kdYCJFONUiE77pWCyFQtKnWmHy3j1X9Pj3Ob4YnkktDxPMTNly4hG-Za0Ihy1fKSZym9m6q-D1l4AEXZKVTSwNChCIYnhL3IzJK4eSkcx3RZVw/s640/blogger-image-601612898.jpg"></a></div><br><p></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The other more recently to LA with Stuart, mum and my step dad Ash, but I call him Dash these day as in dad Ash. This was more of a grab hold of you pants because your in for a hell of a ride. We did everything imaginable, Disney as I am a true kid at heart, horse riding in the hollywood hills, universal studios, Zumba beach, Malibu, shop shop shop, Santa Monica pier. I even celebrated my 26th birthday in LA at Hard Rock Cafe. </span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP-JcHTwxbkdLt1P-34W-ci4fuou1FfODghR2v9dyLzdT2wRwFqiDp791_RblPDDOZxzFEIM0umV_xbz2SeKh18brjnpaZjboiX_dSXQkZfADtGG7-FJtYCR43YELXQc0nYdnP_7aeC8g/s640/blogger-image--1827765519.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP-JcHTwxbkdLt1P-34W-ci4fuou1FfODghR2v9dyLzdT2wRwFqiDp791_RblPDDOZxzFEIM0umV_xbz2SeKh18brjnpaZjboiX_dSXQkZfADtGG7-FJtYCR43YELXQc0nYdnP_7aeC8g/s640/blogger-image--1827765519.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ0IJxoz0ByX_0CeWksCQNBoFSMgq8a0AUPyMjo0SrE6JJxiEI7RzacNTZLp8prEvYgp9osfC6DteGfZr-EVcxDJvMZO1qqeOKXJdZUu5Q7HyOErffxo3QCxcMqc1F20R-UFMCFvQaf6o/s640/blogger-image-1012111149.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ0IJxoz0ByX_0CeWksCQNBoFSMgq8a0AUPyMjo0SrE6JJxiEI7RzacNTZLp8prEvYgp9osfC6DteGfZr-EVcxDJvMZO1qqeOKXJdZUu5Q7HyOErffxo3QCxcMqc1F20R-UFMCFvQaf6o/s640/blogger-image-1012111149.jpg"></a></div><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUHWi2IoRx_foZhCm4mxIqBrt6FoTQSTAfzDlUm2SdgKuIjFYlWIkJ5KnE29OTiPI4EepFRNkjfKJiSwpWWf_RkhHHzd6AfXF8dllKwtPOtI8gHOmI8jhZ7M4GpA3ImsEsxdJgwoAaeV8/s640/blogger-image-153711683.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUHWi2IoRx_foZhCm4mxIqBrt6FoTQSTAfzDlUm2SdgKuIjFYlWIkJ5KnE29OTiPI4EepFRNkjfKJiSwpWWf_RkhHHzd6AfXF8dllKwtPOtI8gHOmI8jhZ7M4GpA3ImsEsxdJgwoAaeV8/s640/blogger-image-153711683.jpg"></a></div><br><p></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCbPeIqa2e2qpcj1q5mRbnyMDU9kAtyJZunOHVjQOfIRa-oDedIyqr_iK3tq7SXcYqOdYu22XPibzwRkv7rjulI4cWC9FqeaM7xYzAi4c5IbSRRrNqD2bmxD7VvYlxIrG2g1KbebcTPPA/s640/blogger-image-1285007890.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCbPeIqa2e2qpcj1q5mRbnyMDU9kAtyJZunOHVjQOfIRa-oDedIyqr_iK3tq7SXcYqOdYu22XPibzwRkv7rjulI4cWC9FqeaM7xYzAi4c5IbSRRrNqD2bmxD7VvYlxIrG2g1KbebcTPPA/s640/blogger-image-1285007890.jpg"></a></div><br><p></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I started teaching group lessons in Exeter sweat and stretch and filled the studio with Aurelian grip poles which I am now a ambassador and reseller for. This is really exciting for me, for the first time in a long time I'm growing my buissness and I have so many more plans! Next year in January I'm planning to start teaching aerial hoop in Exeter after qualifying as a xpert instructor with xpole, although finding a venue is tricky but iv already bought over half the equipment to start. I am having a new logo made and having a slight change of name to cover all that I offer now. So I am Extremely fitness, with Xtreme pole, Xtreme aerial and Xtreme training as what I offer! Xtreme training After I qualified as a personal instructor in May this year! </span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So as you can see life is good. I'm not saying my life is perfect, far from, I have battled with depression for the last 2 years after the loss of friends in the literal sense and family in metaphorical. These things along with others at times made it very hard to cope, but after some help I feel like I am not just coping with depressions but I am beating it, well and truly. </span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I'll leave you with some pictures of a photo shoot I had back in May. For anyone who has me on Facebook none of this will be news but those who don't I hope you have enjoyed my update.</span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKYVasa71jerLmXdFFeTbY0qCHN_03EMoym12BISxWsqaTvz-AHrWWMSBnUkPNMiy0rz5yJmnpuvm2kxQVPo68FhnZJnk0fGfzVSBRp58PjBgQ5zeX0GRujvSXoOUNmQHmMtriPiEnqeo/s640/blogger-image-662962893.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKYVasa71jerLmXdFFeTbY0qCHN_03EMoym12BISxWsqaTvz-AHrWWMSBnUkPNMiy0rz5yJmnpuvm2kxQVPo68FhnZJnk0fGfzVSBRp58PjBgQ5zeX0GRujvSXoOUNmQHmMtriPiEnqeo/s640/blogger-image-662962893.jpg"></a></div><br><p></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVEYcVsnmjdbkT_XwnRFwbIigwiEXmKuWMrRX137O4NFW1PwIUTtlCuwbQUPDwmIKzuZEHKL2yOLQxHZvP81lLn9ODjRd1IPkOSBfJw3EFP1TG8GJJYchQfqsFSl3sknfHuUZiuEQ_vjA/s640/blogger-image-6593297.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVEYcVsnmjdbkT_XwnRFwbIigwiEXmKuWMrRX137O4NFW1PwIUTtlCuwbQUPDwmIKzuZEHKL2yOLQxHZvP81lLn9ODjRd1IPkOSBfJw3EFP1TG8GJJYchQfqsFSl3sknfHuUZiuEQ_vjA/s640/blogger-image-6593297.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDFmqIdfFSXPaXb-GtP93vOVKjCeBo54o8nhGhHwSvQKD6zTzSvUHw-FdxuNxjhB9QI0RBdFHYkcTOE7Q5ZAsxPfC_8ZcIYms00n75kw2yHtLKCSXmalAcbJolsw-W8-bd1gUSok7Rlkc/s640/blogger-image--105793144.jpg" imageanchor="1" style="margin-left: 1em; 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background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px; font-family: -webkit-standard;"><br></p>Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com5tag:blogger.com,1999:blog-4891890415105870203.post-17320506182705224272015-05-20T02:44:00.001-07:002015-05-20T02:44:40.225-07:00Competitor It's time to complete a life goal. Iv had it in my mind for so long now the idea that I have nearly missed my opportunity so many time, means that this year I put it at the top of my list! I am becoming a competitor in the pole world. <br />
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Thursday night I sat as I uploaded my video entry, filled in the forms and transferred the entry fee. It's been done. Now I have to wait till the end of next week to find out if I get to compete at the Miss Pole Dance Uk semi pro on 28th of June. In all honestly I don't know if I get through, the competitions high! If I do, will I win? I highly doubt that! But I am committed, I'm in it to winit, it's not about show boating to others or being better then anyone else, it's about beating myself, tricking my body into reaching new heights and telling it that ultimately Cf may try to kick my ass nearly every day but I am still what I was ment to be, I am still a dancer. <br />
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As I delve into my training more and add in new aspects, I can feel my body knowing what it has always known but never been able to do, lines become sharper, moves flow freely as I start to unlock my true potential. I know it's in there, I know I can do it, it's so hard to explain but I am becoming everything I was born to be, born to do. I was not born to spend my life dying, but set it alight as I twist and bend into beautiful shapes. <br />
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- Posted using BlogPress from my iPadAnonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com9tag:blogger.com,1999:blog-4891890415105870203.post-82318576945213430322015-04-06T03:47:00.000-07:002015-04-06T03:47:31.569-07:00Kirstie: My New Lungs Documentary Following on from love on the transplant list here's a documentary by gloustershire universitys Charlotte Miller <a href="http://youtu.be/6Tk5noQlcZI" target="_blank">Kirstie: My New Lungs</a> Please share and help spread awareness for Cyctic fibrosis and Organ Donation.<br />
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I really like this doc, I feel it shows me honestly. I hope you like it to.<br />
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<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com2tag:blogger.com,1999:blog-4891890415105870203.post-60733940456351832972015-02-22T07:11:00.001-08:002015-02-22T07:11:15.930-08:00Fitness, fun and flightI feel I should have something compelling to say. I guess what I do have to say is compelling to me. I am well, I am alive, I am alive more then I have ever been! I can breathe, I am grateful. <br /><br /><br /> I am currently studying to become a personal trainer, yep that's right, I have thrown myself further into the fitness world and I am loving it. I qualified my gym qualification last week with flying colours and this week I have started on my course work for my Pt qualification. I always thought I wasn't a natural studier, but I have been so enthralled by it all. The thought of picking up my books to study excites me and I wonder what I will learn today. I want to research more than they tell me and I am already looking at different course to expand my knowledge after this one. I want to do nutrition, sports massage, i signed up to do my aerial hoop qualification on the 18th and 19th of march. <br /><br />None of this means I don't want to be a pole instructor it just means I want to be a better one and also spread my wings into the fitness world and help people become healthier, happier people. I want to help cfers and post transplant patients rehabilitate eventually and help them transition in to a normal healthier life style that I know so many have struggled with including myself. I still battle with Kirstie the underweight cfer who was allowed to eat what she wants, now I'm Kirstie the fit poler who actually needs to watch what she eats and fuel her body ready for the next thing. <br /><br />I feel so emerged In life and improving myself that simple worries are fading away and my grief although still very tangible is somewhere I can live with it. my grief for Emily, for the so many cfers who have died recently and for liana who's funeral I attend Thursday.<br /><br />It also seems that as I am so busy now I do not have time for my newly appointed role as a trustee for live life give life and decided that as I cannot give it the attention it deserves to go back to my old role as advocate while I spend my time doing things I always wanted to do, Im taking the chance to enter some pole, comps this year after training very hard. I hope I get the chance to comp and maybe even come away with a title. <br /><br />Any way blogosphere I will leave you with the feeling of elation as I continue to look forward to life. <br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=15/02/22/209.jpg'><img src='http://photo.blogpressapp.com/photos/15/02/22/s_209.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=15/02/22/210.jpg'><img src='http://photo.blogpressapp.com/photos/15/02/22/s_210.jpg' border='0' width='640' height='640' style='margin:5px'></a></center><br /> Flight<br /><br /><br />- Posted using BlogPress from my iPad<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com3tag:blogger.com,1999:blog-4891890415105870203.post-9159267723340529652015-01-07T09:35:00.001-08:002015-01-07T09:37:33.301-08:00The world is a little less sparkly - Emily Thackeray The first time I met Emily was when her smiley face looked round my hospital room door. I was still struggling to do anything for myself and feeling like I would never gain full independence back. I croaked at her 'you never told me it was this hard' and with that knowing look shes said 'I know' the look ment more then anything to me it ment that someone in this whole place understood just how hard it was and suddenly I felt like maybe I could get through this. Emily had a very magical feeling about her, a understanding and a way to reach you when no one else could. She didn't enter my room because she had a cold and didn't want to give it to me but from the door It was like she was hugging my heart and instantly soothing my troubled soul. <br />
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From then on Emily and I became great friends. Although Emily had been through transplant and all the horrendous things that came with it she was just normal in a very extraordinary way. She was like me very chatty and we could talk about the most deepest things to the most girly, pink and sparkly things. We often wowed each other with our blondnes and constantly argued who was more of a drama queen in our black sense of humour to laugh over our health issues.<br />
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In true style Emily was there every week often more than once bringing sparkle back to my hospital room through out my chronic rejection. She would bring Sophia her little girl who had been born through surrogacy at only a few months old to cradle in my arms next to me on the bed, while she badgered me about what I'd eaten. She was a true mummy in every sense of the word, taken on the temporary role to mother me when I needed it. We talked about my decline and about maybe having a second transplant. She asked me how I felt if I stabilised where I was and was to well for transplant but to ill to live my life as I wanted. I said I'd be ok with that. The next week I could tell Em thought I was now very ill and in need of that second transplant. See Em being there was the most unselfish thing ever because she had chronic rejection to only she was stable at the time, but every time she saw my face it was a reminder that she might be going through the same very soon. But she continued to come. I even rang her to say my goodbyes when it seemed all else had failed. I can't remember the conversation Iv blocked it out because they were All to painful. When I got my second transplant she was still there making sure I recovered. <br />
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I text her a few weeks later to say thank you for being such a rock and that I loved her for being so amazing. <br />
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When Emily was there I knew she had rejection but I couldn't imagine her being ill like me, in denile I told myself she would be fine. She wasn't. Em started radiation therapy, but she did stabalise. Thats when she caught pneumonia i knew she was bad. I went and spent a whole day with her and sat and pampered her. I rubbed her feet as she feel asleep and I let her sleep. She needed it. Later I painted her face as a violinist played ave Maria and she closed her eyes taking in the music and relaxing. We filled our bellys that night with curry and I knew that it might be the last time I saw her but I refused to believe she would ever leave us. We talked of what was to come, that she knew she had a fight on her hands and she knew she would give it her all for Sophia. No questions about that she gave it everything. <br />
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Things did get better from there but it wasn't long till she was rushed back in and I hung on to the end of the phone while she text me telling me she was scared. She even managed a text whilst on ecmo. I told her I knew she could do it and I wished I was wish her to hold her hand. She text me the last message I would get from her that it was mega extensive but she would give it her all. She hung on until a new set of lungs came and she fought many complications but there were just to many. She passed away on the 28th December. My heart feels heavy and I ache to speak to my friend, there were things that only em knows and I was holding on to tell her when she was awake. Now I can't. My soul feels so sad that my friend is gone and it hurts to know Sophia will not see her again. Her family will keep Emily's memory alive for Sophia and I vow to keep her memory alive in live life give life the charity Emily co- founded and I am now a trustee for. At the moment I am on IVs and awaiting admission to Harefield I know being there will be extremly hard as It was the last place I saw her. All I can say for now is I am grateful to learn so much from my dear friend, she reminded me of who I am and to always stay true to that. She reminded me to always stay kind, to live life and to keep smiling. I have so many other things she taught me and cannot be more grateful for my extraordinary friend.<br />
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- Posted using BlogPress from my iPadAnonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com4tag:blogger.com,1999:blog-4891890415105870203.post-69437990207114388602014-10-17T16:25:00.001-07:002014-10-17T16:25:05.508-07:00Full house <br />My life has moved on. I feel like I have begun the greatest chapter of my life. My health is the best it has been, there will always be something but to me it's nothing. It's just life. Every night I curl up in my bed there is more life in this body then there ever has been. More life in this house...<br /><br />My husband, my little Kia (best friend and pup) and my nephew. <br /><br />My nephew Charlie (15) now lives with us. I have always tried to take a active role as auntie in my many nieces and nephews lives as much as possible. Although that wasn't possible for so long. Now I feel I may have all the time in the world to give. It was such a big decision for us as a family but ultimately a great decision. <br /><br />I love having him here and helping him through one of the most important years of his schooling. I hope me and Stuart can guide him through his decisions and help him find his way in the world. It's such a precious gift being able to help mould someone. To parent them. A gift we never thought we would have, but gifts don't always come in the most conventional ways. <br /><br />Who knows what his life will hold but I hope the most important lesson I can teach him is to live life to the full, as if today is the last day of your life but dream as though you will live forever. <br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/10/17/565.jpg'><img src='http://photo.blogpressapp.com/photos/14/10/17/s_565.jpg' border='0' width='283' height='400' style='margin:5px'></a></center><br />Left to right. My sister Kerrie, my niece Kaylee (13) my nephew Reece (5) me and Charlie <br /><br />Just one of the ways my life is changing for good...<br /><br /><br />- Posted using BlogPress from my iPhone<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com3tag:blogger.com,1999:blog-4891890415105870203.post-75285296731434548062014-05-14T03:45:00.001-07:002014-05-14T03:45:21.002-07:00Menopause <br />When you know something already, it's obvious to you for so long but Then when someone confirms that and suddenly it's like your really hearing it for the first time. The meaning sinks in and suddenly a little bit of sadness fills your heart. <br /><br />My ovaries are very nearly completely shut down, I am going through menopause.<br /><br />I never wanted kids, I always knew that with cf it's not really a possibility. I was always to ill to even think that there would be a time in my life that they would fit in. Knowing I would die young I didn't want to have a child to leave it through its childhood. Having a transplant I suppose that can change things slightly, you know you have a new life line, there's the option of surrogacy, you now have energy to look after a child, run around and play games but still I know my time on this earth is not a normal life span and chronic rejection could set in at any time, proved to me last year when I was diagnosed at approximately 2 years post my first transplant and declined rapidly. Yes I was so lucky to get my 2nd transplant but I still don't know how long this will last and therefor wouldn't be willing to risk having a child to become ill and leave my husband caring for me whilst I die and a baby. Don't get me wrong I have seen my friends post transplant have children and I'm so happy and proud of them it's was some calling deep within for them, there maternal instinct, for me I just don't have enough of that to have a baby with all those risks.<br /><br />But still sometimes I think if I had a normal life, I would have a child. If I were normal I could wait till I was in my 30ies when I have lived my youth for me and followed my dreams of a successful career, one that I would be well into by now because I wouldn't have had all these other set backs in life. I could then have a child and devote the rest of my life to them. <br /><br />So that is that, I am not that girl in a normal life and never will be, not that I don't love my life I really do. If by some mirical I get to lead a long life and live into my 50ies then I will look back and feel a pang of regret that I never got to have a child and now all options have forever been taken away. It's final. I have no choice I cannot change my mind and have a child.<br /><br />The sadness I felt when the menopause was confirmed wasn't just for the child I would never have, there was a whole mix of emotions, suddenly I realise that part of my youth has gone and that's not just mentally, not like just a feeling, physically part of my youth has been taken away from me. My mother had a early menopause, but by early I mean 40ies hers by all accounts seemed quit simple, she complained and still does of hot flushes. So the thought of menopause didn't really frighten me, but then I started researching and realised a lot of my current problems seem to comedown to this. A huge sense of fatigue, that was contributed to by other health factors that are now sorted but the fatigue is still there, tho lessened slightly. It makes me feel so old. It makes me feel less feminine, I am now officially unable to do the thing that makes us women, have children.<br /><br />Then there's the mood changes, I haven't really told many people but I guess now is as good as time as any. I am on anti depressants. I started them a few weeks ago due to depression and anxiety. There are things that have upset me which I don't want to go into and I guess with my hormones being out of whack it's lead me to feel paralysed inside, a sense of dragging and all momentum has gone. I'm fixated on a few things and really need to be free of them finally, events in my life as well as old demons I have carried around for years. My anxiety comes on suddenly for no reason, I'll just be sitting there and feel overwhelmed, trapped like I can't get out, I don't know what I'm trying to get out of, my own mind, my own body. It's a overwhelming horrid feeling that I can only remember feeling in itu with my first transplant and when I have been on extremely high doses of prednisalone which cause anxiety. The antidepressant are helping but I still lack the motivation I had before, I just feel stuck. Which makes me feel even sadder because I so want to be out enjoying every moment as I do love my life, just right now I feel I've almost forgot how to. <br /><br />There are many other side affects or symptoms of menopause, which I am experiencing but don't really wish to talk about. It seems that some women sail through, I am not one of those. <br /><br />I started this menopause at 23, the reason was radiation therapy. I'm starting HRT soon which should help with these symptoms although it may not help one of them. I don't think many people will get how I feel going through menopause, I'm sure a few will think great no periods. I guess I would have thought that before going through it to.<br /><br />- Posted using BlogPress from my iPad<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com25tag:blogger.com,1999:blog-4891890415105870203.post-55080566361986141972014-04-05T11:32:00.001-07:002014-04-05T11:32:58.563-07:00Leaving next <br />So for a while iv been struggling on and off with fatigue, unfortunately more so lately then not. I'm still trying to keep up my gym routine but the last two weeks iv struggled more then ever. I struggle everyday I go to work. I feel faint and weak. It all came to a head when I had a cold after another cold work just got harder and harder and despite my store manager doing everything he could to help. There just seemed no way I could carry on my job and fulfil my role that I'm suppose to do and there seemed to be no other way the job could accommodate me any more then it had. <br /><br />I have a chest infection currently and will most probably be starting Ivs if I'm no better by Monday. <br /><br />So still trying to go on despite bad fatigue, which made me collapse on Thursday, I went off to work this morning and realised I just couldn't do it anymore. I have a lot of time off and never feel better, the anxiety of turning up to work, knowing it would make me feel awful. I just couldn't do it. So I sat down with my store manager and told him I'de like to hand in my notice. Not something I had done lightly. It had been on my mind for a long time and I just couldn't keep going. <br /><br />I don't plan to sit around, I still want to work and earn my way in the world and I'm hoping I will be able to start teaching pole again soon, something I can do when I'm feeling up to it and I only have to teach an hour at a time then I can break and rest. I can organise my lessons around me. I can't sit around, it's just not me, but hopefully some time off will give me chance to get whatever's making me so tired sorted. The doctors think it's ebv. A virus that you can't get rid of but can be dampened down. I'm also not resigned to feeling like this forever and will get my energy back not matter what.<br /><br />So my last day at work is next Saturday. I'm so grateful to my store manager and all he did to try to help. So I look forward to teaching I pole again and also I'm still working toward my public speaking and tv presenting career which is taking off with my first paid speaking job booked in! <br /><br /><br /><br />- Posted using BlogPress from my iPad<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com14tag:blogger.com,1999:blog-4891890415105870203.post-59819935228633082282014-03-31T06:12:00.001-07:002014-03-31T06:28:27.376-07:00Memory boxes So I wanted to share with you all the beautifully decorated special box I recieved through the mail. Now I don't usually plug products, but I thought this was pretty special and seeing as a large amount of people who read my blog have had transplant or know someone who has had one, I thought I would be doing the transplant community a favor in sharing this box. <br />
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This amazing memory box is made by Kati, Kati is fellow cfer and transplanted Oli Lewington's wife. It's fantastic quality perfect size for a mixture of my 2 transplant memorabilia. <br />
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If your looking for that special gift to commemorate a transplant, this has got to be it!<br />
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She does all sort of organ related boxes, baby, wedding or even custom made.<br />
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So if your looking for a special memory box transplant or otherwise I defiantly suggest www.mfeogifts.com <br />
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- Posted using BlogPress from my iPadAnonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com0tag:blogger.com,1999:blog-4891890415105870203.post-10895093301006178152014-03-09T13:03:00.001-07:002014-03-09T13:03:21.238-07:00Magazines, speaking and training Life at the moment is fairly busy, iv been doing a fair few magazine articals. The first of which was out last week.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/824.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_824.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br />Me and Katie gammon who recieved our transplants the same day and appeared on day break together were featured in Love it magazine!<br /><br />I am also featuring in Top Sante a women's fitness and wellbeing magazine. Me and my mum made our way up to London last Friday for the photoshoot. I had hair, make up and got styled into a beautiful dress. You know the type you shouldn't even think of food in! Especially if you have cystic fibrosis. Which was extremely hard as lunch was catered before the shoot! Let's just say I saved the pudding till after :-0 <br /><br />I'm in Junes issue.<br /><br />Here's some shots of me at the studio.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/825.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_825.jpg' border='0' width='640' height='640' style='margin:5px'></a></center><br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/826.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_826.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/827.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_827.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/828.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_828.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /> <br />Me and my mum then went for dinner at a Mexican place and stayed over in a hotel. It was a lot of fun.<br /><br />I'm hopefully receiving a copy of these pictures for my new website www.kirstietancock.co.uk this is my professional website for my public speaking and tv presenting. Which iv been spending a lot of my time focusing on. I joined toastmaster in February to try and improve my delivery of my speaking and have since completed my first speech and won my fist table topics. Toastmasters is a group where you go and work your way through a book on different speeches. It's a fun, welcoming group and I have to say in 3 meetings I feel iv come along leaps and bounds and I'm working my way towards competing in competitions. This could really boost my career because who wouldn't want to hire a award winning speaker, right? (That's if I win ;-)) plus it's just really fun and has made be realise how much I enjoy speaking and it's what I want to do. <br /><br />Iv realised speaking is so much part of who I am, possibly because I get so nervous, usually my nerves come from a deep fear of failure in something I'm really passionate about. If I wasn't passionate about speaking the nerves wouldn't be there. It's really exciting when you realise finally what your suppose to be doing in life and have goals to aim for.<br /><br /><br />Lastly my training at the gym! I have been working really hard to regain my fitness and exceed previous levels. I'm doing a lot of weight training, flexibility training, pole training, hoop training and cardio too. I want to be the best I can get to, because i believe that fitness has played such a huge part of why I'm still alive and have recovered well each transplant. Having muscle got me through ecmo and ventilation with out the strength in my intercostal muscles I might not have ever breathed on my own, with out muscle memory it could have taken me months and month to walk again, I could have been left unable to walk! After my second transplant I was up the second day, I can only attribute that to the perfect lungs inside of me, the doctors and the muscle mass I had still maintained, despite the fact that before the transplant my oxygen levels and c02 levels were so bad I couldn't move of the bed. So I guess I'm saving muscle because you never know when you might need it on a rainy day. Also I am Determined that this year I will be at the transplant games! I'm starting to work with Exeter university to become the fittest I can to compete, in the most efficient safe way. Here's a few of my training pics.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/829.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_829.jpg' border='0' width='385' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/830.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_830.jpg' border='0' width='397' height='400' style='margin:5px'></a></center><br />Me and Lou Lou at the gym, back arching for back arch march.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/831.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_831.jpg' border='0' width='385' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/832.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_832.jpg' border='0' width='400' height='388' style='margin:5px'></a></center><br />My best ever back arch, I didn't realise I was this bendy! Iv always been flexible but my back I thought was my weak point!<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/833.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_833.jpg' border='0' width='381' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/834.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_834.jpg' border='0' width='400' height='390' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/835.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_835.jpg' border='0' width='389' height='400' style='margin:5px'></a></center><br />My top I got made for the gym :-)<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/09/836.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/09/s_836.jpg' border='0' width='395' height='400' style='margin:5px'></a></center><br /><br />Don't worry guys I'm not going to become a muscle bound hulk, it's not in my genetics ;-) feel free to add my Instagram I upload all my training on to there along with pictures of my pooch and everyday life @ktbutterfly <br /><br />Lastly you might have seen the badge at the side of my blog, I'm no 10 on top cf bloggers :-) <br />http://www.medicalassistantonlineprograms.org/top-cystic-fibrosis-blogs/<br /><br /><br />Posted using BlogPress from my iPad<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com3tag:blogger.com,1999:blog-4891890415105870203.post-87536631470481453862014-03-06T10:14:00.001-08:002014-03-06T10:14:12.096-08:00Transplant troopersSo I have been very busy here's one of the projects iv been really busy with Transplant troopers calendar a vintage calendar featuring transplant recipients and those still waiting for transplant.<br /><br />I'm one of the four girls organising the calendar, on the team is Victoria Glenn, Charlotte Davies and rachel Prosser. <br /><br />Here is a sneaky peak of my month, which we have released. The final one is different form this and even more exciting so you will have to buy the calendar.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/03/06/605.jpg'><img src='http://photo.blogpressapp.com/photos/14/03/06/s_605.jpg' border='0' width='266' height='400' style='margin:5px'></a></center><br /><br />It's released in August. Our website is www.transplanttroopers.co.uk and our Facebook group https://www.facebook.com/transplanttroopers?ref=hl<br /><br />I would like to give credit to<br /><br />Matt Austin - photographer<br /><br />Make up - kylie bosense<br /><br />Hair - Jessica Littlewood <br /><br />Venue - barnfield theatre<br /><br />This photograph will be featuring in Devon life on the 13th march<br /><br />I will be updating my blog in the next few days on a few other things iv been working on including, two more magazine articals, a photoshoot, my website, toastmasters and my new training schedule!<br /><br /> <br /><br />- Posted using BlogPress from my iPad<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com1tag:blogger.com,1999:blog-4891890415105870203.post-52212026095662217932014-02-10T11:28:00.001-08:002014-02-10T11:28:24.685-08:006 month Today 6 months ago I received my second double lung transplant. My gratitude to both of my donors is un explainable. <br /><br /><br />I am so sorry for the family's loss, I hope that in there hearts they can find some peace from such a huge grief. I know that grief doesn't fade or lessen but I hope that maybe through this donation they can find some comfort. With every breath I am thankful for this gift, the gift of life that both my donors have given me. I live every second with the purpose to live it to the full.<br /><br />For now that is all I can say, I'm planning to write to my second donors family soon.<br /><br /><br /><br /><br /><br />- Posted using BlogPress from my iPad<br />Anonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com5tag:blogger.com,1999:blog-4891890415105870203.post-21302207169016661632014-01-23T09:59:00.000-08:002014-01-23T10:00:43.701-08:00Clinic = amazing<br />
Today I had clinic at harefield, I'm 5 months and 13 days post second double lung transplant. Me and stu turned up bright and early and got to spend most of the day with my friend Emily assin, her baby Sophia and sister Abbey. Emily and Sophia visited regularly when I was in rejection and Sophia would cuddle up with me while Emily made sure I was fed, watered, pain free and calm. So as you can tell already these visits were very special to me. Emily is 7 years post transplant and had her baby through surrogacy. Sophia is 8 months now.<br />
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Me and Emily.<br />
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Me and baby Sophia!<br />
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Clinic started with blood, an achievement in its self, my veins are now accessible and bleeding well after a well earned break. Yep 4 1/2 months free of un planned hospital admissions, iv only been in for a couple of days for planned bronchs! This feels amazing to me!<br />
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Then lung function, my fvc = total capacity = 88% and my fev1 = amount I can blow out in the first second showing how well your lungs are working = 96% so I can blow out 96% of 88% in the first second = 100% amazing! <br />
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I them had a 6 month exercise test, walking for 6 minutes I covered 570meters the most my physio had personally ever seen! Which again is amazing!<br />
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Also over the last month or so my blood sugars have been playing up first my insulin need went up dramatically, I tried incredibly hard to tackle this, which resulted in a fair few hypos and now after going back to the gym and trying to cut down my carbohydrate intake iv been off insulin for two days and still managed to have a hypo. Obviously a hypo isn't good but it's really something that I'm off insulin I now just have to get the right amount of carbs in to keep my blood sugar stable. So that's pretty.......amazing.<br />
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The only slight issue is my white cell count is to low and so are my neutrophils. I have stopped a medication and will have to keep an eye.<br />
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I'm really enjoying life and feeling like things are going in the right direction. I'm so happy and thankful it's positively sickly ;-) I'm now on my agents website and waiting for the work to come in, which will hopefully result in being able to leave my job at next and focus full time on public speaking, tv presenting and get back to teaching pole (once my garage is converted in to a studio). <br />
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- Posted using BlogPress from my iPadAnonymoushttp://www.blogger.com/profile/14461907384160027436noreply@blogger.com5