Friday, 29 April 2011

Day to Day.

I find it really hard telling people that I can't do something because I'm not well, I find myself believing that they are saying 'oh what a surprise, she's ill again' or I'm afraid people will think 'but she's always ill, surely it's no different.'

The thing is, with CF some days I'm not as bad but then other days I'm very unwell. I never really know how I'm going to wake up each day, sometimes how I am during the night gives a clue, but other times I just suddenly wake up feeling like death. 

Today, I coughed up blood, even though it's happened a few times recently, it never gets any easier. It's like a crackle in your lungs that doesn't go away, then a gurgle in your throat and you know exactly what is coming, next thing you know it's in your mouth and it's disgusting. Sometimes it's a very small amount but today it was quite a lot. Afterwards I felt really light-headed and sick so I had to relax with my oxygen on for a while, just waiting for it all to calm down. 
I'm still not feeling great now, I've been freezing today, I've even put the heating on, snuggled up in my hoodie and was STILL cold. I was sick this evening and I'm just generally feeling rubbish. 
Yesterday, I wouldn't have known I was going to feel like this today, however, I did have a very bad night - I didn't get to sleep until 8am due to being breathless and coughing too much to lay down, if I move around when I'm coughing that much, everything gets juggled around and I'm then sick. So I just have to sit it out and hope it passes, but last night that took a stupidly long time. I even missed the wedding! I'd planned to get up and watch it, but the fact I'd literally just fallen asleep after all that drama I decided to sleep it out. 
Hooray for Sky + lol! :)

Anyway, the point I'm making here is, yes I am 'always ill,' but I'm not always this ill. Today, I felt horrific. Tomorrow, I may have a better day, I will only find out in the morning! 
Fingers crossed it's a good day.

Finally I'd like to end by saying a massive thank you. The reaction I have had from my article in the paper has been amazing, so many people have told me that I helped them make the important decision of becoming an organ donor, others have let me know that I have their support, I've had loads of messages wishing me well and people telling me that I'm in their thoughts.

If you haven't yet read it, here is the link: Evening Star Article

People have been calling me an inspiration which is humbling and I'm genuinely honoured to hear that, it makes me think that although I am going through this, I'm never alone.
It's also been a good way of finding out the people that are 'important.' I had people who don't even know me taking time out of their day to write me letters/send texts/emails/messages of support, people I hadn't spoken to in forever, distant family and old friends - I don't want to single people out so I'll leave it at that, but it's times like this when you realise who does actually deserve to be in your life and those who don't. 

So the last few days have been full of serious highs and horrible lows, but that is just life! 
It's an emotional rollercoaster but wouldn't life be boring if everything was easy?!

As a bit of a poker fanatic I shall leave with this:
Life isn't about the cards you are dealt, it's about learning how to play them - either you're a winner, or you're a fantastic bluffer ;)
x x


Mc Clarey said...

I'm EXACTLY the same, some days are really really awful and I could just sit and cry I feel so bad, then the next day I might wake up with a bit more energy. Totally get how you feel, your not alone :)
I always feel bad when I say im not well to do something, sometimes i chicken out and make another excuse which is bad really, but i hate admitting how ill i feel.
Hope tomorrow is a better day for you :-) xx

Tanya said...

Another great blog Kerry. You write so well, maybe you should think about writing your autobigraphy and getting it published!!
It would be brilliant to make others aware about how people with CF suffer and may even make others list themselves as an organ donor.
I know you will probably think I'm mad for suggesting it but you are very talented and capable of doing it. It would also keep you busy while you're in hospital next week and make the time go faster.
Anyway hun, I hope you have a better night tonight and feel better for it tomor. xx