Friday, 25 April 2014

Living on the List

This has turned out to be the hardest post I've ever had to write. Which makes absolutely no sense whatsoever because I'm really happy at the moment. I think the problem is that I usually write down my thoughts but to be honest I don't really have any. The only times I really think about the transplant is when I'm having a bad day and just can't wait to feel better. I think I'm in a really good place at the moment because I'm ill enough that I really want that call to come but I'm level headed enough to not spend my nights tossing and turning, wishing and hoping. I know the call will come it's just a matter of waiting and keeping myself well enough for surgery.

So in view of the fact that I don't really have many feelings towards my transplant, other than a strange sense of calm, I've decided to write this post about what it's like being me at the moment. If I had taken the time to imagine what it might be like at this stage of my illness I probably would have imagined myself a lot sicker than I actually feel. Considering what's going on inside my body and how badly my heart and lungs are failing, day to day I feel okay (until I try and walk anywhere that is). Though it varies considerably. It's definitely a case of good days and bad days. It's mostly good but the bad days are really horrific and I do get quite down on those days. Everything just seems to get worse all on the same day and of course tiredness always makes everything harder to deal with so when I'm more tired I generally feel really rubbish. On bad days it's a case of trying to while away the day as fast as possible so I can get to bed and hope for a good day the next day. But the good days are okay. I can go out in my wheelchair, enjoy a bit of food, have a laugh and feel quite happy about everything. 

My main symptoms are tiredness, sickness, palpitations, painful swelling in the tummy and a lot of phlegm. But on a good day nothing is too much bother. The breathlessness however is horrible whatever day it is and I avoid it as much as possible because it feels so horrible, it can't possibly be doing my body much good. And I really hope to avoid an exploded lung or god knows whatever else could happen as my whole body feels like it's ready to throw the towel in. At the moment I can't walk much more than 5 steps without feeling out of breath and I physically couldn't do much more than 10 steps but that varies a lot too. My tummy pain has been under control up till now but it's been getting very painful recently, to the point where I can't sit still. I'm waiting for my water tablets to start making a difference because at the moment they don't seem to be doing much. I'm loosing weight like crazy too, which means my body shape is looking abit weird at the moment as I'm skinny as anything but my stomach and lower back is swollen so I'm looking slightly pregnant at the moment but hopefully everything will go back to normal after the transplant. 

In other news I'm off to get my central line fitted in two and a half weeks. It'll take months for the actual medication to start making a difference so I want to get the ball rolling as soon as possible. I'm not too worried about it as it's not under general anesthetic or anything so it's quite simple and then I have to learn how to mix the medication and hook everything up, keeping everything clean and stuff like that so that'll be quite interesting. 

Other than all that nothing much is happening. I've been out for the odd outing to stop me going crazy from being inside all the time. I've had lots of visitors, which has been nice. I like having something to look forward to like that. We're having a girls meal out this weekend for my Gran's birthday and the week after my boyfriend James is coming to visit so we'll probably do something nice then. I always think it makes a lot of difference getting out for an hour or two twice a week. 

A very inquisitive lamb I visited when I was at my Gran's last week! 

I'll update you all if something interesting happens but I'm really struggling to write anything at the moment. Perhaps watching constant reruns of Friends has frazzled my brain! 

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