Since Friday and having the news that I was active on the transplant list it has felt really surreal.
I get a mixture of emotions running through me every minute of the day, both positive and negative. It’s hard to explain but when people ask how I feel I still really don’t know how I’m supposed to answer them.
In a way I don’t think it’s ever going to feel real until I get my call, and I say until because I’m obviously trying to be positive!!!
I don’t think it’s helped me feeling really unwell over the last few day’s. Although we didn’t seem to do very much during Stefan’s week off last week, it also feels like we did loads because I just don’t have the energy for things anymore.
I certainly was getting out of the house, pretty much everyday and that hasn’t happened for a good few months.
I had a lovely weekend resting through the day’s on Friday & Saturday and spending the evening with good friend’s.
It wasn’t until Sunday that it really hit me. I knew I had over done it so both Stefan & I agreed that I’d do nothing this week but completely rest.
I’m in desperate need for iv’s now, my breathing is really bad, not even bi-pap is giving me a rest. I’m getting a lot of chest pain and can’t seem to relax at all. I’m hoping to start iv’s again in the next couple of day’s after a 5 day break, I just need to hear back from my CF nurse’s in Exeter.
Even though I’ve been really poorly, I have started to plan a few things.
I know it sounds morbid, but I have sole tenancy of my house at the moment and should something happen to me, I don’t want Stefan to have to deal with the aftermath of it all. We are having a meeting with my housing officer this week to change it from sole to joint. I have also been thinking about my will.
From negative to positive, Stefan & I are going to try and sort out a little bag sometime this week to put a side ready for me take to Harefield should I get my call so we won’t be rushing about.
I’ve also managed to find some holiday accommodation for my beloved snake babies at real short notice when the time comes whilst Stef is down in Harefield with me. This is what worried me the most, I love them so much I just want them really well looked after so it was a huge weight off my shoulders when I received a phone call earlier today.
I think that’s what I’m going to hate the most whilst I’m recovering, I handle my babies everyday and the possibility of me not even seeing them for about two months makes me feel physically sick. I’m definitely going to work my ass off to get myself as strong as possible and out of there so I’m back home enjoying life with them, my amazing hubby & my new lungs…
I’m in the middle of writing a goal list of things I want to do after I’ve recovered from my transplant; I’ve also had a few emails back and forth from my local newspaper and Live Life Then Give Life so please watch this space, I’ll be sure to keep my blog readers posted…
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I feel for you, I remember the all the feelings I had on the list it can be a bit surreal! The issue about tenancy is something we struggled with as the tenancy was mine and couldn't be changed:( It is not morbid I'm sure having it sorted will put both your minds at rest. Glad to hear you have holiday accommodation for the snakes and I would pack a bag soon I had two calls within the first two weeks of being listed.
ReplyDeleteTake each day as it comes and rest is a priority you are bound to find it hard to relax,goals are the key to getting though this. Do all the things you enjoy as much as possible finger crossed the wait is not a long one all my best thoughts and wishes to you both