Today I am feeling alone and bored, my life has become one where I can't do anything without people around to help, or to take me out. I literally can not live my house with out anyone. I could make it out the front door but that is as far as it goes, I have no car now She went back on wednesday, she was named lyra and she was a lime green seat Ibiza. Her lifes ambition was not being for filled with me anyway. She stayed parked up for over 3months with me to ill to drive and I have to say im still not in any fit state to drive. I cannot walk anywhere as I simply get to out of breath. So I am stuck, trapped, alone. My carers come in and my mum pops round but I still feel so alone. Everyone has gone out today, none of them thought to ask me if id like to go. I feel a third wheel in everyones life, I have no money to do anything either, as mentioned before the govement refuse to pay me any benifits and I am in a tangle of appeals and forms, giving my car back hasn't left me with any money because I don't start to recieve any until 9weeks time, thats right so for now I have £250 to my name a month which goes straight on rent and that doesnt even cover my half of the rent. Me and Stu went from being comfortable to poor, it feels so degrading, counting pennys to buy some squash.
I feel so empty today, the glass doesnt even feel half empty It feels like it has all gone. I don't want people to tell me to keep my chin up today, why? why should I? I want to be down and grumpy, surely I am allowed that?
I even put up a facebook status saying 'If anyones free today, who doesn't mind that my company requires oxygen and lugging a wheel chair round? Im totally fed up and need to get out the house' replys 0 feeling loved much, no.
Also I have now been on the transplant list one month yesterday, Im not even sure how I feel about that.
Saturday, 30 April 2011
Wednesday, 27 April 2011
Clinic
Hours in clinic and I feel truly knackered, my head and body feel like lead. I did lung function today, the last lung function I did was half way through my last admission when I was still reasonably ill and it was 22% I hate to think what it was at the beginning of that admission, today I reached 23% Its not a great really a significant rise, but I did have a nasty bleed since then and I was very poorly for a very long time. I have to say today I felt really good, Well as good as I think I can, so I think this is going to be my lung function when well now, where as before when well I could reach 30%. I'm not bothered much, Its just a number, I feel good and I'm not going to let that drag me down also my Sat's are reasonably good when resting, so I can now have my 02 off whilst resting now. Although at the moment I'm so knackered I need it on.
Were planning to keep with the permanent IVs as I really don't think we can risk coming off them and having a drop like last time, I just don't think my lungs could cope with my infection getting so out of control as last time.
We talked about the use of my by pap and whether I was at the stage to use it at night, which I don't think we are and my doc agrees, but as soon as I feel myself dropping and I want to try it I have to go in over night and have some blood gases done. I'm just so happy I feel stable and I can avoid that for a while. Its good to know this options there when I need it though.
So after clinic we had to pop into Exeter to the bank and a quick trip to monsoon, where I brought all my wedding jewellery :-D so happy about this. Now I'm at my mums chilling until Stu picks me up later as hes got stock take. I'm probably going to nap on my mums bed, she only has one room at the moment as shes renovating a whole bungalow to have an upstairs, a hard job but its looking amazing so far, she's good with that sort of thing and interior design. Anyway Bye for now.
Were planning to keep with the permanent IVs as I really don't think we can risk coming off them and having a drop like last time, I just don't think my lungs could cope with my infection getting so out of control as last time.
We talked about the use of my by pap and whether I was at the stage to use it at night, which I don't think we are and my doc agrees, but as soon as I feel myself dropping and I want to try it I have to go in over night and have some blood gases done. I'm just so happy I feel stable and I can avoid that for a while. Its good to know this options there when I need it though.
So after clinic we had to pop into Exeter to the bank and a quick trip to monsoon, where I brought all my wedding jewellery :-D so happy about this. Now I'm at my mums chilling until Stu picks me up later as hes got stock take. I'm probably going to nap on my mums bed, she only has one room at the moment as shes renovating a whole bungalow to have an upstairs, a hard job but its looking amazing so far, she's good with that sort of thing and interior design. Anyway Bye for now.
Monday, 25 April 2011
Missing a part of me
I have decided to give you an insight into my life, something that I wasn't really ever going to share on this blog, but its such a big part of me and who I am. To understand what CF has really done you have to see what I was and what my life was before I had to give it all up. I go around pretending that I don't care that its a small part of me and it is in a way because there is so much to me and what makes me, me. I have to pretend I don't care because otherwise it hurts alot more. POLE.
I was a fitness pole dancing instructor. I lived and dreamed pole. Sometimes its still comes in to my sleep, but now its in my nightmares, the ones that remind me of it being ripped out of my life. You may be sitting there not understanding what fitness pole is, you may think its seedy. But for me, it was an art, a dance, acrobatics on a pole, a gymnastic, it was all of those rolled into one and I taught it, I shared that love with others and educated women about fitness. I don't think you can ever understand my love of pole, not even as one of my students, because at the level I was at you only knew if you where there at that level yourself.
This probably sound so daft to so many people, but I just want you to take a minute and think about what you love doing, what runs deep into your soul and makes you feel amazing, then have it slowly and painfully ripped from your finger tips, because it wasn't just like one day i couldn't do it, I could always do it, but each time i went to do a move the burning pain in my lungs became more severe, the headaches and shere breathlessness became so bad until i knew I just couldn't push myself anymore and I sat there and taught and carried on sharing my gift through verbal instruction, but i think the agony on my face was clear, teaching became torture, I couldn't do it anymore but i had to sit here and watch others do what I loved, don't get me wrong I still loved teaching but the fun was draining until I reached a point where I was to sick to even verbally instruct.
So now I convince myself I don't love it as much as I do and that's what I will continue doing, otherwise I think It might be just to painful to bare. So If your one of my students and we start to talk about pole and you can't understand why I'm so distant and unwilling, its simply because its to painful to bear anymore.
I want to leave you will some photos of me poling.
I was a fitness pole dancing instructor. I lived and dreamed pole. Sometimes its still comes in to my sleep, but now its in my nightmares, the ones that remind me of it being ripped out of my life. You may be sitting there not understanding what fitness pole is, you may think its seedy. But for me, it was an art, a dance, acrobatics on a pole, a gymnastic, it was all of those rolled into one and I taught it, I shared that love with others and educated women about fitness. I don't think you can ever understand my love of pole, not even as one of my students, because at the level I was at you only knew if you where there at that level yourself.
This probably sound so daft to so many people, but I just want you to take a minute and think about what you love doing, what runs deep into your soul and makes you feel amazing, then have it slowly and painfully ripped from your finger tips, because it wasn't just like one day i couldn't do it, I could always do it, but each time i went to do a move the burning pain in my lungs became more severe, the headaches and shere breathlessness became so bad until i knew I just couldn't push myself anymore and I sat there and taught and carried on sharing my gift through verbal instruction, but i think the agony on my face was clear, teaching became torture, I couldn't do it anymore but i had to sit here and watch others do what I loved, don't get me wrong I still loved teaching but the fun was draining until I reached a point where I was to sick to even verbally instruct.
So now I convince myself I don't love it as much as I do and that's what I will continue doing, otherwise I think It might be just to painful to bare. So If your one of my students and we start to talk about pole and you can't understand why I'm so distant and unwilling, its simply because its to painful to bear anymore.
I want to leave you will some photos of me poling.
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| Elbow grip, holding on with just my had and elbow. |
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| Bow and arrow |
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| Vamp |
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| My business Logo |
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| Twister grip hand spring, pure strength |
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| More twisted grip fun |
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| As you can tell this is my favorite move, the strength it takes is phenomenal |
Thursday, 21 April 2011
Benifits
OK so how anyone works the benefit system is beyond me, All i receive is DLA higher rate and I have a motobility car. I have worked My ass off for 2 years running my business, I probably should have stopped work about 6months ago, but I was determined to pay my own way and I didn't want to claim benefits as A) its bloody difficult and every time iv gone to I find it hard to get a penny out of anyone B) because I liked that I was earning my own way, even if it was making me ill. But now i am desperate for money, I am well and truly beyond being able to work, but will anyone give me any money. NO.
I filled in forms for ESA over 3 weeks ago, this is the benefit that has replaced incapacity and is what I should be in a fair world entitled to. I am not, the reason, Stuart earns to much, now you may be thinking fair enough, if hes got enough money to support you both then why should we get money, well no. The wage hes on is rubbish and once hes driven to work everyday 17miles and 17miles back and paid parking £5 a day hes left with enough to pay our rent and bills but we can't afford food or money to actually do anything with. My nurse has been ringing round for a ridiculous amount of time, iv now asked my social worker if she can have a look into it for me. But I have to appeal this decision, until then I am broke. My nurse on the phone stated how do they expect a terminally ill person to go without any money and that I am far ill er than they could perhaps even comprehend, but I still have to go through the stress of appealing and going back and forth trying to get some money. Now I could get a crisis loan and believe me, were in crisis, but if we don't know if were going to receive anything, How do we pay it back?
We might also be entitled to, or should i say Stu might be entitled to tax credit, but they only think he will get £6.60, you have to ask if its worth it at the end of the day, but i will fill in the form just in case.
Another thing iv decided is to give up my car, to get the money. It pained me to do it, but I haven't driven in months and can't foresee me being able to do so until I get a transplant and then if i do i hopefully will be re able to claim the car as i do suffer with sever arthritis, which is the reason i originally got the car, not for my cf although that became just another reason to have it.
So there it is. the benefit system does not care if you are terminally ill, it does not care if you have no money to live, let alone enjoy what time you may have left. David Cameron decided to reform the benefit system, he decided to spit on people like me, who have worked there socks off for as long as they could, he was lucky that hard working tax payers payed him a handsome wage when his son was ill so he could provide for him the best he could, but for those of us who don't live in a well off house hold we will just have struggle and suffer, when we are most in need. I won't even start on what hes trying to do with the NHS.
I can feel my blood boiling just thinking about it.
Anyway on another note, 5 days of being bizzy and they left me a little worse for wear, I had trips out and about enjoying the sun, sunbathing, beach, 2trips to the hospital, which weren't so fun but needed never the less. Unfortunately I have lost 3kg, which puts me back at a low bmi possibly to low for transplant, but I'm hoping they would take into account how ill iv been and not call off a possible tx, my team have said they will contact them. When i saw the figure on the scales I felt the tears brimming, i try so hard to keep my weight up and haven't seen it that low in a while and if it doesn't go up buy next Wednesday then i will start some NG feeds to get it up. Iv now got a routine of 2week of an IV and I change IVs I'm on 2 at a time and one week ill change one the next week I change the other so that if I have any allergic reactions they will know what IV it is. I also got an oxy arm (a device that looks like a Britney mic, it defuses 02 in front of your face) from the hospital for sunbathing, so I don't get tan marks (yes I have my priority's) and also when i need a change because the nasal specs get sore then i can.
All in all i am a mix of emotions, I'm enjoying life and my life is 100X easier now I have the care, there trained in physio now, so again life is easier and my chest is being cleared properly. I have energy for other things, not alot of energy but so much more than I did, as most day getting out of bed is to much, but with the help that's made into an easy job. I am so happy in all, but this benefits thing has been like being smacked around the face with a brick. I know it will get sorted, well I hope and pray it will. But its just so much stress and tear I didn't want to be parting with. Oh and an update on Maud (wheelchair) my brother has her at the moment and is pimping her, I will post pictures when shes done.
I filled in forms for ESA over 3 weeks ago, this is the benefit that has replaced incapacity and is what I should be in a fair world entitled to. I am not, the reason, Stuart earns to much, now you may be thinking fair enough, if hes got enough money to support you both then why should we get money, well no. The wage hes on is rubbish and once hes driven to work everyday 17miles and 17miles back and paid parking £5 a day hes left with enough to pay our rent and bills but we can't afford food or money to actually do anything with. My nurse has been ringing round for a ridiculous amount of time, iv now asked my social worker if she can have a look into it for me. But I have to appeal this decision, until then I am broke. My nurse on the phone stated how do they expect a terminally ill person to go without any money and that I am far ill er than they could perhaps even comprehend, but I still have to go through the stress of appealing and going back and forth trying to get some money. Now I could get a crisis loan and believe me, were in crisis, but if we don't know if were going to receive anything, How do we pay it back?
We might also be entitled to, or should i say Stu might be entitled to tax credit, but they only think he will get £6.60, you have to ask if its worth it at the end of the day, but i will fill in the form just in case.
Another thing iv decided is to give up my car, to get the money. It pained me to do it, but I haven't driven in months and can't foresee me being able to do so until I get a transplant and then if i do i hopefully will be re able to claim the car as i do suffer with sever arthritis, which is the reason i originally got the car, not for my cf although that became just another reason to have it.
So there it is. the benefit system does not care if you are terminally ill, it does not care if you have no money to live, let alone enjoy what time you may have left. David Cameron decided to reform the benefit system, he decided to spit on people like me, who have worked there socks off for as long as they could, he was lucky that hard working tax payers payed him a handsome wage when his son was ill so he could provide for him the best he could, but for those of us who don't live in a well off house hold we will just have struggle and suffer, when we are most in need. I won't even start on what hes trying to do with the NHS.
I can feel my blood boiling just thinking about it.
Anyway on another note, 5 days of being bizzy and they left me a little worse for wear, I had trips out and about enjoying the sun, sunbathing, beach, 2trips to the hospital, which weren't so fun but needed never the less. Unfortunately I have lost 3kg, which puts me back at a low bmi possibly to low for transplant, but I'm hoping they would take into account how ill iv been and not call off a possible tx, my team have said they will contact them. When i saw the figure on the scales I felt the tears brimming, i try so hard to keep my weight up and haven't seen it that low in a while and if it doesn't go up buy next Wednesday then i will start some NG feeds to get it up. Iv now got a routine of 2week of an IV and I change IVs I'm on 2 at a time and one week ill change one the next week I change the other so that if I have any allergic reactions they will know what IV it is. I also got an oxy arm (a device that looks like a Britney mic, it defuses 02 in front of your face) from the hospital for sunbathing, so I don't get tan marks (yes I have my priority's) and also when i need a change because the nasal specs get sore then i can.
All in all i am a mix of emotions, I'm enjoying life and my life is 100X easier now I have the care, there trained in physio now, so again life is easier and my chest is being cleared properly. I have energy for other things, not alot of energy but so much more than I did, as most day getting out of bed is to much, but with the help that's made into an easy job. I am so happy in all, but this benefits thing has been like being smacked around the face with a brick. I know it will get sorted, well I hope and pray it will. But its just so much stress and tear I didn't want to be parting with. Oh and an update on Maud (wheelchair) my brother has her at the moment and is pimping her, I will post pictures when shes done.
Sunday, 17 April 2011
Enjoying Life
The last few days have been good, Friday night I went out with the original pole girls, this is a group of my students who were there from the start when I first started my business, One of them is leaving to live in way mouth, so we held a good-bye dinner at the local Chinese and had a few drinks.
It was lovely, for me I also felt it was a a bit of a good-bye pole dinner, as its the first time iv seen them all together in a while since iv completely stopped teaching. It was a chance to let them all know how ill I am, although I still feel that is lost on some of them, I love them all, but I think its hard to realise that your super fit pole dancing instructor is desperately in need of a lung transplant and exactly what that means in real life, as in how it affects me.
One thing I picked up on is that one of them, she said something like you don't want Maud (my wheelchair) at your wedding though do you' to which i simply replied 'I don't want Maud in my life full stop, but i have no choice over the matter' I'm not choosing to use her because I'm lazy and i get a little bit tired with out her, i use her because I'm simply to weak most days to think of a way i can go with out her, she is a part of my life I dislike very much but without her, there wouldn't be anything left of my life apart from sitting at home, so in a way as much as she is my enemy, shes also a great friend.
Anyway, I really enjoyed this get together, but it left me exhausted and Stu picked me up after a drink at the wine bar,soft drink, id had to much alchol (2 glass's of wine) at this point and it was hurting my delicate stomach.
So yesterday we headed of to cribbs, shopping time, I'm still without any money, but i had decided that the money I made from selling my 2 old poles would go on clothes, I rarely treat myself and I decided Life is simply to short, a moto I'm really starting to go with these days. I brought lots of pretty things and wanted to buy a few pairs of pj's, iv told you about my pj obsession before but with no transplant bag packed, I really need some to go in it. But there were none, literally none, apart from the ones that were stupidly expensive. So no pj's I guess that's another shopping trip.
We went to cribbs because of its even surface and the fact its indoors all good things when your in a wheel chair, plus if i did get any energy to walk I could. Unfortunately leaving the house that morning being a military mission we forgot alot of important things, the main one my MST (Pain relief) so my lungs were in agony and not fit to walk.
So today, I'm off to exmouth, to take in the sun, in one of my new out fits, with my mum, ash (her partner) and i think Jamie (his son) So I'm really looking forward to this. Plus later my brother Chris is coming over, hes a mechanic and a taxi driver and i asked him the other day if he could pimp Maud (wheelchair) So I'm going to have sparkly pimped Maud, with my pole dancing logo on wheel covers as if there the spokes, he thought of this him self and I'm very impressed with the idea. I love my big brother alot and really want to spend alot more time with him, I think we both realise we need to (you know just in case).
So I think that's everything for now, I'm looking forward to 2 days of with Stu Monday and Tuesday, were sorting evening invites Monday and chasing up all who haven't replied by the RSVP for the ceremony invites, which is alot, I'm very unhappy, I spent all my time and effort into the invites people should have the politeness to simply reply, god help those who haven't (that's a warning if you're one of them people and your reading this) Then Tuesday Stu is sorting out his suit, yea a little bit late but lets hope not to late :-/.
It was lovely, for me I also felt it was a a bit of a good-bye pole dinner, as its the first time iv seen them all together in a while since iv completely stopped teaching. It was a chance to let them all know how ill I am, although I still feel that is lost on some of them, I love them all, but I think its hard to realise that your super fit pole dancing instructor is desperately in need of a lung transplant and exactly what that means in real life, as in how it affects me.
One thing I picked up on is that one of them, she said something like you don't want Maud (my wheelchair) at your wedding though do you' to which i simply replied 'I don't want Maud in my life full stop, but i have no choice over the matter' I'm not choosing to use her because I'm lazy and i get a little bit tired with out her, i use her because I'm simply to weak most days to think of a way i can go with out her, she is a part of my life I dislike very much but without her, there wouldn't be anything left of my life apart from sitting at home, so in a way as much as she is my enemy, shes also a great friend.
Anyway, I really enjoyed this get together, but it left me exhausted and Stu picked me up after a drink at the wine bar,soft drink, id had to much alchol (2 glass's of wine) at this point and it was hurting my delicate stomach.
So yesterday we headed of to cribbs, shopping time, I'm still without any money, but i had decided that the money I made from selling my 2 old poles would go on clothes, I rarely treat myself and I decided Life is simply to short, a moto I'm really starting to go with these days. I brought lots of pretty things and wanted to buy a few pairs of pj's, iv told you about my pj obsession before but with no transplant bag packed, I really need some to go in it. But there were none, literally none, apart from the ones that were stupidly expensive. So no pj's I guess that's another shopping trip.
We went to cribbs because of its even surface and the fact its indoors all good things when your in a wheel chair, plus if i did get any energy to walk I could. Unfortunately leaving the house that morning being a military mission we forgot alot of important things, the main one my MST (Pain relief) so my lungs were in agony and not fit to walk.
So today, I'm off to exmouth, to take in the sun, in one of my new out fits, with my mum, ash (her partner) and i think Jamie (his son) So I'm really looking forward to this. Plus later my brother Chris is coming over, hes a mechanic and a taxi driver and i asked him the other day if he could pimp Maud (wheelchair) So I'm going to have sparkly pimped Maud, with my pole dancing logo on wheel covers as if there the spokes, he thought of this him self and I'm very impressed with the idea. I love my big brother alot and really want to spend alot more time with him, I think we both realise we need to (you know just in case).
So I think that's everything for now, I'm looking forward to 2 days of with Stu Monday and Tuesday, were sorting evening invites Monday and chasing up all who haven't replied by the RSVP for the ceremony invites, which is alot, I'm very unhappy, I spent all my time and effort into the invites people should have the politeness to simply reply, god help those who haven't (that's a warning if you're one of them people and your reading this) Then Tuesday Stu is sorting out his suit, yea a little bit late but lets hope not to late :-/.
Thursday, 14 April 2011
Care Plan
Well, today I had my care package put in place, my carer came round this morning at 10am and we chatted about CF and my life and waiting for new lungs and what that means. She met Kia, obviously an important thing for anyone coming into my home. I think she is firmly a Kia fan, most people are.
She ran me a bath, made my bed, dried my hair and made me breakfast and as of Wednesday next week they will be trained to do my physio. It was pretty successful. I felt really comfortable with her and I'm actually feeling really happy about this whole step, yes it means I'm iller, but its making my life easier so I can reserve energy for the good stuff. :-D She came back in the afternoon to make me lunch, which was great it was good to know I didn't have to stress about having to get up and make it myself and not feeling up to it. Most of the time id just go hungry.
She said she'd been online and looked at my news pieces as I had told her about them, she said she was glad she saw them after she met me otherwise she would have felt to upset to come, It makes me feel bad when people get so upset by my story, but its emotion is the only way to get people to understand about CF and how important organ donation is.
I thought about another thing she said, about how most of the people they give care to are old people, it must be weird treating me, 21 and so ill. I also said this was one of my better days, she's glad it was, I think its best to ease her into how i can be, I don't want to scare her, even today was pretty bad and I sensed that she thought so to. It looks like ill have about 3-4 people coming in and out but hopefully they will try to keep it down so I can build a bit of repore with these people, I felt I could really do that with the women today.
For those of you who missed my ITV piece update here's the link LINK. I'm also working away on a few other media things to spread the organ donation message., so watch this space.
She ran me a bath, made my bed, dried my hair and made me breakfast and as of Wednesday next week they will be trained to do my physio. It was pretty successful. I felt really comfortable with her and I'm actually feeling really happy about this whole step, yes it means I'm iller, but its making my life easier so I can reserve energy for the good stuff. :-D She came back in the afternoon to make me lunch, which was great it was good to know I didn't have to stress about having to get up and make it myself and not feeling up to it. Most of the time id just go hungry.
She said she'd been online and looked at my news pieces as I had told her about them, she said she was glad she saw them after she met me otherwise she would have felt to upset to come, It makes me feel bad when people get so upset by my story, but its emotion is the only way to get people to understand about CF and how important organ donation is.
I thought about another thing she said, about how most of the people they give care to are old people, it must be weird treating me, 21 and so ill. I also said this was one of my better days, she's glad it was, I think its best to ease her into how i can be, I don't want to scare her, even today was pretty bad and I sensed that she thought so to. It looks like ill have about 3-4 people coming in and out but hopefully they will try to keep it down so I can build a bit of repore with these people, I felt I could really do that with the women today.
For those of you who missed my ITV piece update here's the link LINK. I'm also working away on a few other media things to spread the organ donation message., so watch this space.
Tuesday, 12 April 2011
Home and housing
As I lay there in my hospital bed, the pain starts to shoot through my left lung, Its building slowly, my breathing is getting harder. In a matter of minutes the pain has gone from a dull ache, to overwhelming agony, not today, please not today, I'm suppose to be going home. I press the buzzer, '8 out of 10 pain, I need pain meds' I can't even move now, moving only makes the pain shoot through my lungs and halt my breathing, It hurts to breath in, it hurts to breath out. My sats are low on 02, my heart rate through the roof and my temp is up. Oramorph, Mst (long lasting pain med) they don't touch it, we work our way on to IV morphine, the pain starts to ease enough for me to breath.
This way yesterday, the day I was set to go home, but once the pain had eased enough for me to move, no-one could really persuade me to stay, I had a xray to check there wasn't collapse or any wholes in my lung and there wasn't. Off home I went. We had the task of setting up my spare room as my treatment room, moving my fridge for my IVs, my chest of draws with all my medical stuff in, another small fridge I had left at my mums (for food) and my oxygen concentrator. Were basically trying to make it as easy for me to be at home as possible, by having as much stuff upstairs, I should be able to spend the best part of the day up stairs and not have to go up and down them which I found out, I really can't do unless I really have to. Which is slowly, taking a step at a time, resting every couple of steps and collapsing on the bed.
I'm getting use to all the tubing for oxygen, I find it overwhelming how much has changed and I am fully dependant on others.
This morning, I found out what the mystery pain was in my chest, that I'm having to keep on top of with the pain meds otherwise I can't move or breath. I woke up to blood, blood in my mouth. I spat it out and I continued to have a bleed, It wasn't a awful bleed, but defently the source of the pain. This and the fact of how dependant I am on people has made me question whether the sidmouth property is the right thing. We went and viewed the one next to it today. Its finished and has people living in it. Its lovely, really big, nice home and I want it I really do. But If anything were to happen to be and my mum couldn't be with me within 5 minutes, like the bleed, then id be on my own, completely. Also I really can't do anything with out anyone and i know I'm going to have a care system in place but there are times when I want to go out socialize I can't just have my mum nip and pick me up and bring me round to her, Its a lot of petrol and time running back and forth. Basically I want to stay where i am, I really like my little house and so I'm going to try try try to get a stair lift fitted. I hope my landlord will agree, as the only other options are go to sidmouth, move back to my mums with Stu and kia, or wait and wait till a possibly suitable property came up.
To be honest, I have been wondering how long Iv got left and topic I'm very honest with my self over, but find really hard to tell others, I don't think Iv got years to wait for these lungs, in fact, Id be surprised If i survived a year with these lungs. Some people may think I'm being pessimistic, I don't, I just know, that if I don't get these lungs soon I will die. There seems to be very few people who understand that and I can't blame them for not, there in denial, they don't want to think of me dying, unfortunately Its the reality I wake up with every day. So being at home and settled is my priority, I want to just be able to relax and not have to worry about this stuff anymore.
P.s catch me on ITV westcountry tonight
This way yesterday, the day I was set to go home, but once the pain had eased enough for me to move, no-one could really persuade me to stay, I had a xray to check there wasn't collapse or any wholes in my lung and there wasn't. Off home I went. We had the task of setting up my spare room as my treatment room, moving my fridge for my IVs, my chest of draws with all my medical stuff in, another small fridge I had left at my mums (for food) and my oxygen concentrator. Were basically trying to make it as easy for me to be at home as possible, by having as much stuff upstairs, I should be able to spend the best part of the day up stairs and not have to go up and down them which I found out, I really can't do unless I really have to. Which is slowly, taking a step at a time, resting every couple of steps and collapsing on the bed.
I'm getting use to all the tubing for oxygen, I find it overwhelming how much has changed and I am fully dependant on others.
This morning, I found out what the mystery pain was in my chest, that I'm having to keep on top of with the pain meds otherwise I can't move or breath. I woke up to blood, blood in my mouth. I spat it out and I continued to have a bleed, It wasn't a awful bleed, but defently the source of the pain. This and the fact of how dependant I am on people has made me question whether the sidmouth property is the right thing. We went and viewed the one next to it today. Its finished and has people living in it. Its lovely, really big, nice home and I want it I really do. But If anything were to happen to be and my mum couldn't be with me within 5 minutes, like the bleed, then id be on my own, completely. Also I really can't do anything with out anyone and i know I'm going to have a care system in place but there are times when I want to go out socialize I can't just have my mum nip and pick me up and bring me round to her, Its a lot of petrol and time running back and forth. Basically I want to stay where i am, I really like my little house and so I'm going to try try try to get a stair lift fitted. I hope my landlord will agree, as the only other options are go to sidmouth, move back to my mums with Stu and kia, or wait and wait till a possibly suitable property came up.
To be honest, I have been wondering how long Iv got left and topic I'm very honest with my self over, but find really hard to tell others, I don't think Iv got years to wait for these lungs, in fact, Id be surprised If i survived a year with these lungs. Some people may think I'm being pessimistic, I don't, I just know, that if I don't get these lungs soon I will die. There seems to be very few people who understand that and I can't blame them for not, there in denial, they don't want to think of me dying, unfortunately Its the reality I wake up with every day. So being at home and settled is my priority, I want to just be able to relax and not have to worry about this stuff anymore.
P.s catch me on ITV westcountry tonight
Friday, 8 April 2011
Im not home
Most people will be expecting this blog to be from home, but I haven’t made it home yet. I had a home visit Thursdays with the OT's, Physio and nurse, where I was taken home by ambulance and we went through my house and what they could do for now to make life easier until we are moved.
Whilst at the home visit the OT started to go on about a property available in Sidmouth. The thought of moving to Sidmouth originally scared me alot and I said out right No, I’d be away from my family, granted only 15minutes down the road but its a lot further than 5seconds, having my Mum and Nan on my door step feels quit important to me and I don't know if living in Sidmouth they would be able to see me as often. Having given up so much in the last few months and having so much of my independence taken away from me but in the same time in a way to keep it, anymore changes I have to make feel that more scary. I am and have been so isolated at home anyway and I realise that when I go home this time, I am going to be that much more isolated and reliant on people. I will be eventually having careers coming in to help with physio, showering, cleaning, food preparation, when it is all eventually sorted and I don't know if such a big move will just isolate me more.
The property is a bungalow, fully adapted for disabled access and brand new, it is a dream property, it will help my health so much, but I’m so scared to make such a big move. I’m still mulling the thoughts over in my head and I am coming round to the idea after a brief trip to Sidmouth to have a nosey at it from the outside but everyone was being so push about it, I was at my point of breaking, the stress levels had reached maximum and it felt like I had everyone nagging and to be honest they were, it was nagging out of concern but nagging never the less and I lost it for a second swore and told them that even though I can only walk a few meters I was close to walking out, I don’t know how and I don’t think it would have been possible but I verbalised the thought, in an attempt to show my distress and anger at the continual nag assault.
Like I said I am coming round to the idea now and it could really work, but sometimes people just have no idea, there not the ones who are having to re adjust there whole lives and I can't just do that all in one second, I have to come round to the whole thing in my idea and my choices, what little choices I have left slowly and well thought out.
I have to say Stuart through the whole of this has been amazing, I know all these changes have got to freak him out as well but he’s doing it all so well. Telling me that the house is my choice, if its going to help me lets do it, but if I’m going to feel isolated and lonely then no. Its hard though, when all the decisions are up to you, I’m not just deciding my fate, but Stus as well. What if its the wrong thing? what then?
I still haven’t explained why I’m still in hospital, its more a technicality really, No home IVs were ordered in time, they suggested I do home IVs the old fashioned way, I don't think my doctor thought this through when he suggested it, I’m struggling to shower, to feed myself, to get up and down the stairs, but apparently waking at 6 then 8 and drawing up IVs from scratch would be possible. Hummm possibly not. Then I have IVs at 2pm 8pm and 10pm that means those many trips up and down the stairs as well as for food and that’s if I can stay awake in those times to concentrate enough on doing IVs along with coping with the ridiculous amount of physio I have to do and the temperatures I’m still getting. So I’m staying till Monday.
Today my mum came to see me, we decided to escape the hospital, any trip where we escape is done with, wheel chair, blankets (to sit on for comfort or to wrap me up when I get a temp as I go really cold) oxygen and enough of it. It feels a little bit like a military mission. We went down to the range and Matalan. The range, the lift was broken so we couldn’t venture upstairs and that really annoyed me. In Matalan Mum decided to buy me some new pj's, I love getting new pj's something about it makes me much happier then when I buy new clothes, probably as I spend so much time in them, I know I will get the use and I like the feel of nice new pj's. Unfortunately for me I have to try everything on, I’m long in the body and leg and often end up with tops only reaching my belly button or ankle swingers. I was spiking a temp at this point and when ever I have a temp, I am extremely breathless, so me and mum in the disabled changing room, with a breathless me trying to put on the pj's, managed extremely well surprisingly but that was the end of the trip really, all my spoons were gone. Back to the hosp, we went to paracetamol up and get into my new pj's Yay. My temp turned out to be 38.1 heart rate 147, sats were ok but this was because id accidentally knocked my 02 up to 4 litres instead 2.
After the paracetamol kicked in me and mum went and sun bathed and mulled over my life and situation, We talked about how things are and how quickly we’ve gotten to this point, we saw it coming, but it still seems like its here quicker then we ever thought. A topic of conversation at the moment, is death, funerals, how people are to cope with out me. How bizarre that at the same time I’m planning my wedding, I’m also planning my funeral. Now I’m not saying I’m planning on going anywhere, but anyone in my position has to think of these things and Iv started jotting down things because I know I may not get that transplant in time a realisation that has really become aware to me with what I like to refer to as the recent decline.
Well Iv possibly bored you all to death with a super long blog now, I hope you've all managed to stay with me till the end. Please don't forget to leave me a comment.
Whilst at the home visit the OT started to go on about a property available in Sidmouth. The thought of moving to Sidmouth originally scared me alot and I said out right No, I’d be away from my family, granted only 15minutes down the road but its a lot further than 5seconds, having my Mum and Nan on my door step feels quit important to me and I don't know if living in Sidmouth they would be able to see me as often. Having given up so much in the last few months and having so much of my independence taken away from me but in the same time in a way to keep it, anymore changes I have to make feel that more scary. I am and have been so isolated at home anyway and I realise that when I go home this time, I am going to be that much more isolated and reliant on people. I will be eventually having careers coming in to help with physio, showering, cleaning, food preparation, when it is all eventually sorted and I don't know if such a big move will just isolate me more.
The property is a bungalow, fully adapted for disabled access and brand new, it is a dream property, it will help my health so much, but I’m so scared to make such a big move. I’m still mulling the thoughts over in my head and I am coming round to the idea after a brief trip to Sidmouth to have a nosey at it from the outside but everyone was being so push about it, I was at my point of breaking, the stress levels had reached maximum and it felt like I had everyone nagging and to be honest they were, it was nagging out of concern but nagging never the less and I lost it for a second swore and told them that even though I can only walk a few meters I was close to walking out, I don’t know how and I don’t think it would have been possible but I verbalised the thought, in an attempt to show my distress and anger at the continual nag assault.
Like I said I am coming round to the idea now and it could really work, but sometimes people just have no idea, there not the ones who are having to re adjust there whole lives and I can't just do that all in one second, I have to come round to the whole thing in my idea and my choices, what little choices I have left slowly and well thought out.
I have to say Stuart through the whole of this has been amazing, I know all these changes have got to freak him out as well but he’s doing it all so well. Telling me that the house is my choice, if its going to help me lets do it, but if I’m going to feel isolated and lonely then no. Its hard though, when all the decisions are up to you, I’m not just deciding my fate, but Stus as well. What if its the wrong thing? what then?
I still haven’t explained why I’m still in hospital, its more a technicality really, No home IVs were ordered in time, they suggested I do home IVs the old fashioned way, I don't think my doctor thought this through when he suggested it, I’m struggling to shower, to feed myself, to get up and down the stairs, but apparently waking at 6 then 8 and drawing up IVs from scratch would be possible. Hummm possibly not. Then I have IVs at 2pm 8pm and 10pm that means those many trips up and down the stairs as well as for food and that’s if I can stay awake in those times to concentrate enough on doing IVs along with coping with the ridiculous amount of physio I have to do and the temperatures I’m still getting. So I’m staying till Monday.
Today my mum came to see me, we decided to escape the hospital, any trip where we escape is done with, wheel chair, blankets (to sit on for comfort or to wrap me up when I get a temp as I go really cold) oxygen and enough of it. It feels a little bit like a military mission. We went down to the range and Matalan. The range, the lift was broken so we couldn’t venture upstairs and that really annoyed me. In Matalan Mum decided to buy me some new pj's, I love getting new pj's something about it makes me much happier then when I buy new clothes, probably as I spend so much time in them, I know I will get the use and I like the feel of nice new pj's. Unfortunately for me I have to try everything on, I’m long in the body and leg and often end up with tops only reaching my belly button or ankle swingers. I was spiking a temp at this point and when ever I have a temp, I am extremely breathless, so me and mum in the disabled changing room, with a breathless me trying to put on the pj's, managed extremely well surprisingly but that was the end of the trip really, all my spoons were gone. Back to the hosp, we went to paracetamol up and get into my new pj's Yay. My temp turned out to be 38.1 heart rate 147, sats were ok but this was because id accidentally knocked my 02 up to 4 litres instead 2.
After the paracetamol kicked in me and mum went and sun bathed and mulled over my life and situation, We talked about how things are and how quickly we’ve gotten to this point, we saw it coming, but it still seems like its here quicker then we ever thought. A topic of conversation at the moment, is death, funerals, how people are to cope with out me. How bizarre that at the same time I’m planning my wedding, I’m also planning my funeral. Now I’m not saying I’m planning on going anywhere, but anyone in my position has to think of these things and Iv started jotting down things because I know I may not get that transplant in time a realisation that has really become aware to me with what I like to refer to as the recent decline.
Well Iv possibly bored you all to death with a super long blog now, I hope you've all managed to stay with me till the end. Please don't forget to leave me a comment.
Wednesday, 6 April 2011
Russel Howard
Being picked up in a silver Mercedes, not how I start all my days, but something I could clearly get used to. We arrived at the studio 3 hours later after falling asleep the whole way down, due to the plush comfy seats. When we arrived and greeted be lots of people all assuring us that they were really really happy to meet me and were sooo Glad I came, I decided to remind them at this point they did know Russell Howard was here and I was pretty sure he was far more interesting then me. I felt slightly taken back by what a warm and positive reception I had and how people assured me that my piece had made such an impact on the night of the show and how inspirational i am.
Inspirational, Its a word i hear alot lately and find it so strange, I guess because so many people are in my position and do the same thing everyday, they live, they smile and we get on with it. I try to help spread a little bit of my thoughts on the world and encourage people to be organ donors and I hope that makes a difference, I think It is, I'm pretty sure it is. When I have people coming up to me and saying that I'm inspirational, I guess that means I have and that they have signed the organ donor register. To be honest I feel very humbled that its because of me.
Anyway me and Stu were brought dinner at the restaurant in the studio, Lush food and free booze I guess we couldn't ask for anything more. Half way through eating my venison, Russell Howard comes over to say hello! The main man him self, I didn't think we'd get to meet him quit yet as i was told he was in his down time for the show and imagined him meditating for some strange reason. We chatted briefly and he was pretty cool, we talked about when they aired my piece and apparently I have a lovely west country accent which i find quit strange as I thought when I listened to myself I sounded like a common London girl, I think I'm more happy with the lovely west country accent analogy from Russell. We discussed listening to yourself for the first time on T.V you know like us celebrity folk do ;-) lol.
We then went to watch the show which was hilariously brilliant and I really enjoyed it, the mystery guest was somewhat worrying and I have to say I'm glad he didn't stick around after the show, as he liked to make perfume out of his own POO. Yes POO. he was a strange man and his next scientific/artistic project, yep that's right apparently its all in the name of science and art, he making rings with the imprint of your anus ring on, 'so you can wear your ring' yep that's right totally crazed and demented rolled into one. Something you really have to watch the show for, I wonder what parts of that interview will actually be suitable for t.v at all. So after the show Me, Russ Stu and a few members of his team were discussing this insane man and the fact that Russell had shaken this man hand, we then got on to pondering what this man does in his spare time and we concluded with poopcicals. That is all I'm going to say really. The night was truly amazing, full of hysterics and strange conversations, something that is quite common with me anyway. Russ invited us to see one of his gigs on his live tour, but asks that i don't throw poopcicals at him, I'm worried that I will now be known as that weird girl who he talked poopcicals with rather than the inspirational girl he originally thought I was. :-/
Him and his producer said If there was anything they could do to help with organ donation campaign, well I have been thinking I would like to get a photo of him in the Live life then give life t-shirt and get it put on the celeb supporters web site and also If he wore it on one of his gigs and just said 'im wearing this in support of organ donation' simple but I think affective and there would be so many people there who could then thing about organ donation. I will be thinking of other ways to utilize His celeb status and spread the organ donation message. I just also have to say what a fab guy he is and this all his good new pieces on the show are always really heart warming and inspiring and what a help he must be to what ever piece he shows just by adding his support to it. Brilliant
So that's my up date on going to see Russell Howard.
Just a few other things to say, I had my meeting on Monday about home care, we have been told we need to move, upsetting and annoying. But a needs must. The stairs are simply to hard for me to deal with and we can't have a stair lift fitted as its a private rent, Last time I used the stair i ended up with a temperature as my lungs are just to weak and can't handle them anymore. In the mean time I will have a OT assessment and careers coming in to help with physio, cleaning, mealtimes and general day to day stuff I may need help with. Also I am still set homeward bound for Friday!!! I am soooo excited!! IVs and lots of meds in the mix but lets just hope I'm home for at least a week.
Inspirational, Its a word i hear alot lately and find it so strange, I guess because so many people are in my position and do the same thing everyday, they live, they smile and we get on with it. I try to help spread a little bit of my thoughts on the world and encourage people to be organ donors and I hope that makes a difference, I think It is, I'm pretty sure it is. When I have people coming up to me and saying that I'm inspirational, I guess that means I have and that they have signed the organ donor register. To be honest I feel very humbled that its because of me.
Anyway me and Stu were brought dinner at the restaurant in the studio, Lush food and free booze I guess we couldn't ask for anything more. Half way through eating my venison, Russell Howard comes over to say hello! The main man him self, I didn't think we'd get to meet him quit yet as i was told he was in his down time for the show and imagined him meditating for some strange reason. We chatted briefly and he was pretty cool, we talked about when they aired my piece and apparently I have a lovely west country accent which i find quit strange as I thought when I listened to myself I sounded like a common London girl, I think I'm more happy with the lovely west country accent analogy from Russell. We discussed listening to yourself for the first time on T.V you know like us celebrity folk do ;-) lol.
We then went to watch the show which was hilariously brilliant and I really enjoyed it, the mystery guest was somewhat worrying and I have to say I'm glad he didn't stick around after the show, as he liked to make perfume out of his own POO. Yes POO. he was a strange man and his next scientific/artistic project, yep that's right apparently its all in the name of science and art, he making rings with the imprint of your anus ring on, 'so you can wear your ring' yep that's right totally crazed and demented rolled into one. Something you really have to watch the show for, I wonder what parts of that interview will actually be suitable for t.v at all. So after the show Me, Russ Stu and a few members of his team were discussing this insane man and the fact that Russell had shaken this man hand, we then got on to pondering what this man does in his spare time and we concluded with poopcicals. That is all I'm going to say really. The night was truly amazing, full of hysterics and strange conversations, something that is quite common with me anyway. Russ invited us to see one of his gigs on his live tour, but asks that i don't throw poopcicals at him, I'm worried that I will now be known as that weird girl who he talked poopcicals with rather than the inspirational girl he originally thought I was. :-/
Before he left as we were sat having a few free drinkies as you do when theres a free bar, he asked us if we wanted a photo, errrr yes, we had been wondering if it was totally geeky to do the fan thing and ask, but we snatched the opportunity up and here's us.
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| Russell Howard, Me, Stuart (Maud my wheelchair) |
So that's my up date on going to see Russell Howard.
Just a few other things to say, I had my meeting on Monday about home care, we have been told we need to move, upsetting and annoying. But a needs must. The stairs are simply to hard for me to deal with and we can't have a stair lift fitted as its a private rent, Last time I used the stair i ended up with a temperature as my lungs are just to weak and can't handle them anymore. In the mean time I will have a OT assessment and careers coming in to help with physio, cleaning, mealtimes and general day to day stuff I may need help with. Also I am still set homeward bound for Friday!!! I am soooo excited!! IVs and lots of meds in the mix but lets just hope I'm home for at least a week.
Sunday, 3 April 2011
The last few days
Thursday was a tiring day, I did filming with ITV for westcountry new, updating everyone that I'm on the list and what that means. This will possibly be aired on Wednesday night, although that's not a defant yet.
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| Me all done up for ITV with my lush hairband Elly sent me in. |
Friday I got to see my beautiful girl Kia, my nan and grandad brought her up to me and I went out to the car park and had hugs with her, she'd had a hair cut so looked gorgeous. Hers a piccy of my gorgeous girl.
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| handmade by tracy jane tracybennellick@btinternet.com |
Escaping the hospital yesterday, me and Stu drove round delivering wedding invites, just the ceremony invites at the moment (left), we have plans to deliver the evening invites (right) at a later date.
The invites are beautiful, the colors are in our wedding colour scheme and I think they make a gorgeous contrast. Stu will be wearing pink cravat and handkerchief and the groom party with be wearing aqua tie and handkerchiefs. My bridesmaid, my big Sister Kerrie is wearing a gorgeous aqua, Grecian style dress and my other bridesmaid Kia will be wearing pink and aqua bows. Theres going to be lots of pink and aqua accessories.
Anyway after the invites We Picked Kia up and went home to have some dinner, but by the time we got home I started to feel really unwell, I ended up with a huge temp, cuddled up in bed with kia and Stu, had dinner and came back to the hospital early. I crawled into the hospital bed, but kept on being interrupted all night with docs checking on me obs being done, x-ray and bloods. I felt so poorly, I hadn't had a temp in a couple of days so was upset to have one again even though I'm on 3 sets of IVs. I think I'm a bit better, but I think this is about as good as its going to really get. My Flem is still very thick and my chest is still full and my breathing feels not much better, I have days where I find it hard to walk a couple of meters and other days where I can manage it. I suppose the only thing that has really improved is the frequency of my temperatures. I'm still on 02 24/7 at the moment and feel uncomfortable off of it. I saw one of my docs this morning and he basicly said that I can expect to get regular temps with my lungs as bad as they are, it made me feel like I should shut up and get on with it, but then I suggested to my nurse that maybe next time I have paracetamol drip as its far more affective then oral paracetamol and quicker. I know these are thinks that I have to get on with but some simple things set in place would make it much easier to cope with, such as the IV paracetamol.
Tuesday, me and Stu are being picked up to go to and watch Russell Howard being filmed and have dinner with the team :-) how cool is that? His producer got in touch after the show and asked us if we wanted to go and watch a show. So I'm really looking forward to that.
Plans for later in the week are to head home on Friday! I hope the temp doesn't stop this, so fingers crossed.
Tuesday, me and Stu are being picked up to go to and watch Russell Howard being filmed and have dinner with the team :-) how cool is that? His producer got in touch after the show and asked us if we wanted to go and watch a show. So I'm really looking forward to that.
Plans for later in the week are to head home on Friday! I hope the temp doesn't stop this, so fingers crossed.
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