Medically I'm 'too well to be listed for my transplant'
Thanks to a huge shortage in donors the window of opportunity has to be just right, not to well but equally not to ill.
On average people are sent for assessment between 35-30% lung function. My average I guess is 32.5 at best 35 at worst 28
However there are times I can go without oxygen, although very rare and i do stillI have some quality of life. But I'm increasingly feeling my quality of life is not as great as I would wish.
I'm finding I'm feeling exhausted more and more. Now I don't mean tired out, I mean exhausted.
I went to the town yesterday with Tom to do the last of out Christmas shopping.
I opted not to use my wheelchair as that is sometimes more stressful, as trying to get in and out of aisles that are far to small, in a swarm of manic shoppers is no mean feat. Anyone that knows our town centre will know the distance I'm speaking of when I say I walked down from eastgate car park, to Starbucks to sit for a while and have a coffee, then on to boots, the works and primark.
As I was walking back through eastgate to the car I was feeling increasingly tired, it felt like my legs physically couldn't carry me any further, my feet were like lead weights and my knees were buckling just trying to keep me going, it felt like someone had struck a match underneath my coat because the burning from my back was so intense where my muscles were screaming to rest, it felt as though I had run a marathon or done a hardcore gym workout every bit of me was worn out.
Now me being me, won't give up and I know I push myself far to hard but I refuse to give in, so I insisted Tom drove us to the garden centre, I managed to drag myself round a few aisles before I knew I couldn't take anymore. I needed more fuel so I upped my oxygen and we stopped for something to eat before stopping at pipps hill so I could buy a new blanket. (An essential in this weather)
Last night sleep couldn't come quick enough, I was in bed and asleep by 10, which is where I stayed, soundo until 11.30 this morning.
I knew pushing myself yesterday would mean a tough day today, but when I woke up I had an intense pain in my lower back. My airways so irritated and tight, not to mention full of sputum from lack of physio yesterday evening that I coughed non stop for an hour, a real stomach retching, painful cough that was just going on and on. When I cough like this it feels like its never going to end, gasping for breath between coughs that are making me gag. After what seemed an age, i managing my inhalers and taking some strong pain relief I drifted off again untill 2.30
It's my friends babies 1st birthday today, and I was supposed to be there at 2.00. But with how I was feeling, aside from being late I was sure I wasn't going to make it at all. But somewhere determination struck to get out of bed and go and see Ava. I didn't want to miss her first birthday, and hate being a let down, so with toms help I showered, dressed and got out the door.
When we arrived natalie (Avas mum) told me Ava was ill herself with bronchitis, which meant that A. She was too poorly herself to enjoy her party and was put to bed, and B. even if she was ok to stay up I couldn't have gone near her as if I had caught her infection I would have been in hospital for weeks right in top of Christmas.
It's funny that I could see the best place for Ava being poorly was in bed, yet I don't apply this practise to myself, I do wonder if I should pay more attention to my body and give it what it needs, instead of pushing and pushing. Maybe one day ill learn.
But another thing today that reiterated to me that I'm not the norm, was when i arrived at my dads.
My dad, bless his heart is a useless shopper, so each Christmas me and Sara set up an online basket of things we want, clothes, shoes etc.
Sara was there before me as I stopped in Natalie's for a while so she had already started her basket. She had some amazing 6 inch heels, and some gorgeous, designer going out clothes. I sat for a while watching her get excited and felt a little pang of loss for how I used to be. To say I loved going out would be an understatement, I used to love clubs, getting dressed up, dancing the night away, seeing my friends, seeing the sun come up as we left the club and dare I say it, loved the feeling alcohol brung, a side of me I know I won't have again.
When it come to my list, I crave comfort, soft pyjamas, flat practical shoes, oversized jumpers that won't show I'm not wearing a bra on the days they restrict my breathing to much. I felt I wanted to order some killer heels and an outrageous dress but what good would they be to me. Maybe just more of a torment of what I can't do anymore.
I'm so thankful I have Tom as he has got to the stage in his life where he doesn't enjoy drinking or clubbing, so thankfully we have found things we enjoy together. We are restricted on how much we can go out so we make the most of the things we can do when I'm having a good day.
I worry that a lot of the posts in my blog are about the bad side of CF and although its not what I Intended it to be, I do find my blog a great sense of comfort when I'm feeling frustrated. I'm not very good at talking about how I feel and if asked I will always say 'I'm fine' but my blog is a place I can release what is tormenting me, without actually having to speak the words or come up with answers to questions.
Its a release and my mind feels clearer once I have emptied the thoughts.
I find when times are good I bask in them and live as much as I can, I almost don't have time to write as I'm busy...to an extent, living!
Limbo is a tough place to be when you know things are not going to Improve.
And yet getting iller, in the long run, is essentially what will make me weller, as I will qualify for a transplant and hopefully have a much better quality of life post transplant.
Some days I wish I was listed for a transplant now as I could see light at the end of the tunnel, but by doing so am I wishing worse health on myself?
Some days are easier managed than others but on the tough days it is very hard not to wish for better health. On better days I am thankful for the health I do have, and thank my lucky stars I am in fact, well enough not to need a transplant, it's a very fine line sometimes between the good and the bad.
But I guess we all have to take the rough with the smooth.