I'm a real lover of Christmas time. Obviously my faith plays a big part in why I enjoy celebrating Christmas, but I also really enjoy the coming together of family and friends. I enjoy our little family traditions which Luke and I have adapted and adopted as our own, such as the choosing and naming of our Christmas tree (sad, I know!), decorating it in a coordinated manner (Luke's input - I'm all for random colours and madness!). I love all the decorations and the lights and the tacky but somehow strangely watchable daytime Christmas films! I love attending various carol services and church services. Unfortunately I am not strong enough to attend church on Christmas day itself (as I would probably need to sleep for the rest of the day to recover!). In addition to this comes the excitement of choosing of presents for people and wrapping them up... Whilst ensuring the Cole family tradition of making the presents as difficult as possible to get into is observed! I was really hoping that this year I would be standing up and decorating the tree independently, but unfortunately that wasn't meant to be as I'm still waiting for those new lungs. However, I was fortunate enough to be well enough last Saturday to walk around our lovely local Christmas tree farm, although it did tire me out significantly.
The most frustrating thing about being so restricted by my poor lung function is that everything has to be planned and done in little stages. For example, when decorating the Christmas tree (Luke obviously does all the heavy lifting and putting the decorations on the tree) I first have to sort through the various ornaments and tinsel. Rest. Then attach the tree hanging bits if needed. Rest. Pass them to Luke to put on the tree. Rest... Luke and I wrap presents together, but I obviously wrap Luke's presents on my own. Again this involves planning to ensure I don't have to make multiple trips around the house. I hope that I don't sound self pitying, but I just wanted to give people an idea of simple festive tasks which have now become quite cumbersome for me (and to be fair, I took them for granted when I was well). I am however, very grateful to be able to do some things with some degree of independence, but I just yearn for simplicity again.
Not only do I have to plan the tasks step by step and think through where things are geographically in the house, I also have to make sure that if I've had a busy day I take it easy the next. I have been in a lot of pain this week; this is largely due to the fact that I was very busy last week. I went Christmas shopping with my dad on Thursday, went to the opening of the restaurant that my brother in law works in on Friday, Saturday saw the getting of and decorating the Christmas tree and Sunday was roast at mum and dad's. I also went to my GP for a blood test on Monday. Whilst all these small events don't seem like much, my annoyingly weary body just needs so much time to recoup after each event. So with complete rest and maxing out on my pain relief on Tuesday and Wednesday I felt much more human by Thursday. I just feel so blimmin' useless and burdensome, which my family insist I'm not. I still can't help feeling like it though! I feel like for the last three years I've been holding onto this hope that one day my call will come and I'll get a degree of normality back. I'm just hoping and praying that by next Christmas I will have had my transplant and be able to enjoy the festive season in a much less restricted manner.
I have a hospital appointment on Thursday and I'm praying that I am 'well' for it - in as much as my lung function, oxygen saturations and other various observations are stable. I know I am silly to worry so much, but I just want to stay at home for as long as possible with my family and friends and I don’t want to wreck their Christmas by being admitted into hospital for whatever reason. Hanging onto stability is great, but I also know that without a transplant things aren't going to improve. I am hopeful though, and despite being told 3 years ago that with my current lung function I had a life expectancy of 2 years, I'm still here- a bit wearier, but still with that fighting spirit. I am in desperate need of a double lung transplant, but it is a waiting game with no guaranteed results. All I can do is live the life I've been given as well as I can and enjoy what I have. If you want to do something amazing this Christmas, sign up to the organ donation register if you haven't done so already! If you have, encourage others to do so too! It could be the most selfless and generous gift anybody could ever give.