No words...

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

Sadness at 7

Well I never thought I would be posting again so soon with news of yet another call. I had been struggling much more than usual after the last call, really finding it impossible to "bounce back" or in fact gain any ground back at all.

It was my 24th birthday on Thursday the 5th and I must admit I wasn't bothered about it at all. At this stage in the game milestones are a mixture of emotions, thankful to still be here but gutted I've reached another occassion still being stuck in limbo. It also serves to highlight how much worse I am healthwise since the last big occassion. I hardly ever go out now, this year I've been out about 7 times in total and probably 4 of those were to the hospital, life is literally played out within the four walls of my room. Even walking the 20 steps to the bathroom is beyond me some days. I had no plans for my birthday, until an invite popped through my letterbox, inviting princess Tor for a royal tea party in honour of my 24th birthday, my amazing friend Lindsay had arranged a little tea party at her house. On the day I felt horrendous, shakey, nauseaous and tired but I was determined to get there. It was a real struggle and mum and I had several cross words in the attempt to get me ready. Lindsay is such an incredible lady, she had already told mum that everything could be brought to me if necessary, and came to collect us in her car so we didnt have the worry of how to get there. When we did arrive I was gobsmacked by the effort she'd put in, there were pink streamers and banners everywhere, balloons, bunting, flowers, and so many cakes and sandwiches that she had made herself. Everything had been done to make life easy as possible and she had thought of everything. We ended up sitting on the sofa as I was getting quite hurting with my back and just had a throughly lovely afternoon chatting with her family and feeling very loved. When I got home I must admit I was exhausted and my lungs were annoyed from the exertion but it was completely worth it. I am so lucky to have someone so special in my life.

Thursday was my actual birthday, obviously my body didn't realise that as it was misbehaving more than usual. I woke up after a bad night feeling very tired and sick. I didnt have the energy to make it downstairs so stayed in my room in pj's all day. I had a huge amount of cards and gifts, I couldn't believe it! Family and friedns dropped in during the day and I managed to see some of them when I felt a little better so it was really lovely. After everyone was gone I was so worn out I couldn't wait to chill out and get to bed early. Then the phone rang. I knew straight away who it was, ironically it was a week on from call number 6 and I had been thinking a lot about the donor family a week on from losing their loved one. Harefield had another good match for me, I was told there would be a long wait and to come up to the hospital. I could not believe it and actually asked if they were joking. They weren't.

So we made the long journey to Harefield, I was too weak to make any attempt at getting myself dressed so mum had to come and help me as usual before we left. When we arrived it was a complete blur, I just kept thinking that there was no way this was happening tonight. I had a bit of a time of it with bloods, which immediately made me very stressed and wound up. I requested that an anestetist come and try for me as they are the best at doing all things needle based. After several botched attempts by the doctor, the anestetist got it all first time which was a relief. Then the wait began. It was around 12am when bloods etc were done and we didnt hear any news until gone 4am. As I have said before, every call is different and this time I was absolutely petrified. I was worried that the call would go ahead, I was terrified by the enormity of the operation and it's recovery process, the lines and drains and all it entails which are one of the biggest fears for me. I was worried that I wouldn't cope, that I wasn't worthy and that I could never live a life that was enough to honour my donor in the right way. I didn't know how to begin building a new life that has never been my own to do exactly as I like adn I worried that I would fall short of everyones expectations. I knew I would always fall short of my own.

I know that many people will wonder how I can feel so scared when this transplant is the one thing that I hope for everyday and my only hope of living. They might even feel angry about it, as though I'm not grateful for the chances I'm getting.Believe me I hate that this overwealming fear has crept in and taken hold of me, I wish that it wasn't there and even now I am still in it's grip not knowing how to try and lessen it. In my heart I could never ever turn a transplant down and if they phoned again right now I would be willing and ready to go. But it doesn't stop me feeling terrified all the same. I know how much rides on this one phonecall and I think that is what makes it so frightening. Wanting to be reassured that I will cope and wanting to do a donor and their family proud. I have alway been someone who gets scared of new situations,especially meeting new people etc. Being so ill is devastating and takes away confidence itself, and after so long like this in a way it's safe, not going out, not having to do things makes it harder when you do eventually face up to them.

Obviously the call didn't go ahead and even with the fear I felt I was so disappointed. New life is scary and uncertain but is the only hope I have. Since the call I have been in such a mixture of emotion I can't begin to describe. At first I felt numb, and zoned out, I still feel in a bit of a blur. I am randomly very angry at everything and everyone, and most of all devastatingly sad. It's hard to concentrate, hard to be "present", to know what to do to feel better. I feel like another call may be close but who knows? I wnat to make things better for next time but don't know how to. Physically I am in the worst shape I think I have ever been. when we rolled in from the call at 6am I crashed out for a few hours fitful sleep. When I woke mum was downstairs, she came up to find me sprawled on my floor being repeatedly sick. The strain on my body has been immense these last few weeks and it hasn't really had time to recover.My hands and arms are bruised from the repeated bloods, and I have blood spots all down my arm from the tightness of the tourniquet. I have had dizzy spells, been more tired than I can say, been shakey, tearful, in a lot of pain and my lungs have felt swollen, sore and as though they just can't cope. I've also had a small amount of old blood in my sputum which isn't suprising considering how rough they feel. I am resting through need rather than choice at the moment as I need to get back to some kind of normal again.

I am incredibly grateful to the huge number of people who made my birthday so special and who have been there as a constant source of support through the false alarms and dark days. Thank you to you all. Hopefully I will be able to post again soon with a happier update.In the meantime if you know someone who hasn't signed up to the organ donor register, please show them this blog and ask them to consider it. xxx