Monday, 21 March 2016

Training when your a spoonie

Training when you're a Spoonie

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.

                "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."

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!

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.

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.



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.

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!                                             
                                     

                    

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.




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. 



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.



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.)



6.) I vary my training - just because I'm training for 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.
Sometimes, you need to recognise that you aren't up for training at all. 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.)



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?



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. 


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

                                             
Photo by phaze photography 


Monday, 14 December 2015

Anything worth having was never easy


As I mentioned I'm currently training my video entry for pole theatre, tomorrow I record it and send it off all before 12 midday. 

The video entry is judged and then it is decided if I get to compete at semi pro umoung 5 others in drama category. 

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. 

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.

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.

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.


My new logo

My favourite pole move Pegasus.



Sunday, 29 November 2015

All the wonder that's to be had


It has been a long time. Most of my posts start like that but to me that means life has been good.


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.





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. 


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. 


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.


 





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. 







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! 


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. 


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.























Wednesday, 20 May 2015

Competitor

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.

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.

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.









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Monday, 6 April 2015

Kirstie: My New Lungs Documentary

Following on from love on the transplant list here's a documentary by gloustershire universitys Charlotte Miller Kirstie: My New Lungs  Please share and help spread awareness for Cyctic fibrosis and Organ Donation.

I really like this doc, I feel it shows me honestly. I hope you like it to.


Sunday, 22 February 2015

Fitness, fun and flight

I 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.


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.

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.

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.

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.

Any way blogosphere I will leave you with the feeling of elation as I continue to look forward to life.








Flight


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Wednesday, 7 January 2015

The 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.

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.

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.

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.

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.

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.










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