Thank you for all your fantastic messages of support after false alarms 6 and 7, it really does mean so much to have so many people wishing me well. I have had several emails from blog readers too which made a huge difference in the dark days immediately after the call; they have all been read and I will am to reply to everyone but probably not for a few weeks. Apologies for the delay.
After a week I am beginning to feel more "normal" although normal still means crap! I was worse than usual after the last call, feeling and being very sick, dizzy and unsteady on my feet, shaking, spending even more time than usual in bed, unable to think or concentrate and my lungs felt more unbearably sore, tight and overwhelmingly tired than they usually do. I had old blood in my sputum from where I had over done things and even silly things like my skin and teeth felt sore and sensitive.
Usually after a call I can see a gradual improvement day by day but now there isn't actually much to improve to. Everything listed above is an almost daily occurance at my current state of health, the call just exacerbated it all. I don't expect to feel "better" anymore.
It's difficult to explain how I'm feeling at the moment, but frustrated and sad is a good starting point. I feel like my whole life is in catch 22 mode. While my lung function is remaining the same, it is as my dr put it recently "consistently awful". At around 18% of normal. What is more frustrating is how I actually feel and trying to express it to others. In July I will have been waiting 4 years for a transplant that still hasn't materialised. If I look back on this blog I know that I would see the same old phrases repeated over and over again, "difficult", "unbearable" and "struggling" to name a few. It feels almost trite to use them now. 4 years have passed but no one has invented new words to capture the increasing "struggle" of those early days compared to now. Struggle cannot begin to touch on how much worse things are for me on a daily basis, by using the same old words I feel like I'm cheapening the immense battle life has become, compared to when I started out on the list. Everyday is so bloody gut wrenchingly difficult to get through. My world literally consists of my bedroom's four walls. I get downstairs maybe once a week, and haven't been in my garden since at least last May. I have been outside of the house about 7 times this year and 4 of those have been to hospital visits. Some days I manage to keep smiling but other days I just despair that life will never get better than this. There are no guarantees it ever will. I am desperate to spread the word about donation, to enjoy my life while I can, to impress upon my care teams the extent to which my illness now controls my every move and to finally be able to move on with my life in a way that isn't 'settling', but I am limited in every way.
Four years is a huge amount of time to live in a state of extreme ill health, fighting through each day just to get to the next. The treatment is neverending and at times takes me over, dragging myself through each day. I am very lucky to not have to spend a lot of time in hospital but that doesn't mean I'm doing ok at home. It simply means that the hospital have nothing left to offer me to in order to improve my quality of life. I'm on the maximum of meds that will help but lung damage cannot be fixed. I don't suffer with infections very often but if I did in some ways I would at least feel that there was a chance that when the right anti-biotics were used I would feel better. When I tell my team that I can't breathe and am able to do less and less, they have nothing to say to me. I have given up saying "I can't cope like this" because no one is going to step in and say "this might improve things for a time", there is no let up, and saying "I've had enough of this" falls on deaf ears. Sometime I wonder if being at home actually hinders my medical teams understanding of how ill I am, if they saw my struggle would they understand it better? Then again why waste days in hospital when we all know IV's won't help the problem. I often feel that people don't realise how bad things have become because using the same old words doesn't do it justice. There are so few people who have waited this long how can they possibly understand anyway?
I only know one person who waited this long for a transplant and when she got one she was too weak to recover. It is a scary and sobering thought. It is extremely difficult to see others getting transplanted while I continue to wait. It's not that I begrudge them but I wish I could be in the same position. Seeing other people get the very thing you wish for most is heartbreaking, some of them have been assessed, listed and transplanted in the time I have waited while I still wait in the strating blocks.
4 years is ages and ages, days and days gone past. It's the length of time my nephew has been alive, in his lifetime he has never had the chance to run around and play with me, never known me when I wasn't sick. It's the length of time it would have taken to get a degree or even an MA if I was up to studying fulltime like my friends. It's countless holidays, days out, missed oppportunities, happy memories, walks along the street, meetings with friends or meals out, if only I had been able to do any of these things. Instead it's been 4 years on hold. 4 years spent feeling the worst I have ever felt. 4 years watching my life get smaller and smaller and watching my CF get bigger. It's 4 years of feeling scared, and watching my family go through hell. 4 years of wondering what might have been. 4 years of not wanting to admit that if a transplant hasn't happened yet maybe it won't ever come, and if it doesn't then what was all this fighting for. 4 years of worrying you have been or will be forgotten, relying on other people to make your life better and having to relinquish all control.
It's also 4 years I wouldn't have been without, despite all of the above. There have been many good times and amazing people that have touched our lives in the deepest of ways. It's 4 years that I know I wouldn't have seen but for a gritty determination and an inbuilt overiding force that desperately wants the chance to live and not simply exsist. I am desperate for my chance at life.
Please pass this on to those you know and encourage them to consider organ donation, the link is at the top of the page. This week is Cystic Fibrosis awareness week, by raising awareness we can stop the others having to suffer in the way that I am now. Thank you x
After a week I am beginning to feel more "normal" although normal still means crap! I was worse than usual after the last call, feeling and being very sick, dizzy and unsteady on my feet, shaking, spending even more time than usual in bed, unable to think or concentrate and my lungs felt more unbearably sore, tight and overwhelmingly tired than they usually do. I had old blood in my sputum from where I had over done things and even silly things like my skin and teeth felt sore and sensitive.
Usually after a call I can see a gradual improvement day by day but now there isn't actually much to improve to. Everything listed above is an almost daily occurance at my current state of health, the call just exacerbated it all. I don't expect to feel "better" anymore.
It's difficult to explain how I'm feeling at the moment, but frustrated and sad is a good starting point. I feel like my whole life is in catch 22 mode. While my lung function is remaining the same, it is as my dr put it recently "consistently awful". At around 18% of normal. What is more frustrating is how I actually feel and trying to express it to others. In July I will have been waiting 4 years for a transplant that still hasn't materialised. If I look back on this blog I know that I would see the same old phrases repeated over and over again, "difficult", "unbearable" and "struggling" to name a few. It feels almost trite to use them now. 4 years have passed but no one has invented new words to capture the increasing "struggle" of those early days compared to now. Struggle cannot begin to touch on how much worse things are for me on a daily basis, by using the same old words I feel like I'm cheapening the immense battle life has become, compared to when I started out on the list. Everyday is so bloody gut wrenchingly difficult to get through. My world literally consists of my bedroom's four walls. I get downstairs maybe once a week, and haven't been in my garden since at least last May. I have been outside of the house about 7 times this year and 4 of those have been to hospital visits. Some days I manage to keep smiling but other days I just despair that life will never get better than this. There are no guarantees it ever will. I am desperate to spread the word about donation, to enjoy my life while I can, to impress upon my care teams the extent to which my illness now controls my every move and to finally be able to move on with my life in a way that isn't 'settling', but I am limited in every way.
Four years is a huge amount of time to live in a state of extreme ill health, fighting through each day just to get to the next. The treatment is neverending and at times takes me over, dragging myself through each day. I am very lucky to not have to spend a lot of time in hospital but that doesn't mean I'm doing ok at home. It simply means that the hospital have nothing left to offer me to in order to improve my quality of life. I'm on the maximum of meds that will help but lung damage cannot be fixed. I don't suffer with infections very often but if I did in some ways I would at least feel that there was a chance that when the right anti-biotics were used I would feel better. When I tell my team that I can't breathe and am able to do less and less, they have nothing to say to me. I have given up saying "I can't cope like this" because no one is going to step in and say "this might improve things for a time", there is no let up, and saying "I've had enough of this" falls on deaf ears. Sometime I wonder if being at home actually hinders my medical teams understanding of how ill I am, if they saw my struggle would they understand it better? Then again why waste days in hospital when we all know IV's won't help the problem. I often feel that people don't realise how bad things have become because using the same old words doesn't do it justice. There are so few people who have waited this long how can they possibly understand anyway?
I only know one person who waited this long for a transplant and when she got one she was too weak to recover. It is a scary and sobering thought. It is extremely difficult to see others getting transplanted while I continue to wait. It's not that I begrudge them but I wish I could be in the same position. Seeing other people get the very thing you wish for most is heartbreaking, some of them have been assessed, listed and transplanted in the time I have waited while I still wait in the strating blocks.
4 years is ages and ages, days and days gone past. It's the length of time my nephew has been alive, in his lifetime he has never had the chance to run around and play with me, never known me when I wasn't sick. It's the length of time it would have taken to get a degree or even an MA if I was up to studying fulltime like my friends. It's countless holidays, days out, missed oppportunities, happy memories, walks along the street, meetings with friends or meals out, if only I had been able to do any of these things. Instead it's been 4 years on hold. 4 years spent feeling the worst I have ever felt. 4 years watching my life get smaller and smaller and watching my CF get bigger. It's 4 years of feeling scared, and watching my family go through hell. 4 years of wondering what might have been. 4 years of not wanting to admit that if a transplant hasn't happened yet maybe it won't ever come, and if it doesn't then what was all this fighting for. 4 years of worrying you have been or will be forgotten, relying on other people to make your life better and having to relinquish all control.
It's also 4 years I wouldn't have been without, despite all of the above. There have been many good times and amazing people that have touched our lives in the deepest of ways. It's 4 years that I know I wouldn't have seen but for a gritty determination and an inbuilt overiding force that desperately wants the chance to live and not simply exsist. I am desperate for my chance at life.
Please pass this on to those you know and encourage them to consider organ donation, the link is at the top of the page. This week is Cystic Fibrosis awareness week, by raising awareness we can stop the others having to suffer in the way that I am now. Thank you x
