It's been a really tough few days and I feel absolutely exhausted from it all.
After my last appointment, Nick went away from the Sunday till the Friday....all was good until about the Wednesday when I just started to feel really low about what is happening to me...to us. I kept it together until the end of my bday on Monday when I just broke down on Nick and sobbed and sobbed about what is happening.
I'm just really scared at the moment. I'm scared of what might happen to me if I get ill, how much it will hurt, how much it will stop me from doing things, how much it will affect my relationship with the kids and Nick. I'm scared of dying young and leaving the kids with no mum...Nick will manage...he's too practical not to just get on with it, but if I leave Sam and Rebecca at a young age, it will really change their lives.
I just feel so guilty at the moment for having got this damned prognosis...it has turned our life upside down, and that of those around us. I'm finding it really hard to live for the moment and to be positive this week. Part of me wishes I'd just got run over by a bus...at least then it would have just happened and the kids would have been young enough not to be caught up in a cycle of hospitals and illness.
Bloody disease. I don't know why it had to be me. It's not that I can't or won't cope with the illness or the early death, I just don't want my kids or Nick to have to cope with it all. I wish that I could just run away at the moment and leave them all to get on with their own lives. Nick told me he would never forgive me if I did though. Luckily I'm too much of a coward for it, but I can't say it hasn't crossed my mind recently.
So, somehow I need to get more positive about stuff again. Hard with the next blood tests a week on Friday, and the results a week after. But then again, how stupid will i feel if it is all ok at them...what a waste of 3 weeks of misery.
Sorry it's been a bit of a depressing one today. Will try to be more cheery next time!
Deb,enough of this please. You have to be more positive and get rid of all of these negative thoughts. You owe it not only to yourself but to those around you. They will be just as apprehensive as you are, so try not to inflict your fear and negativity on them. Fill your days with enjoyable things and don't sit and dwell too much on your illness and the uncertain future. I want to provide some positive encouragement and I'm sure my story and the way I feel at the moment (five + years after diagnosis)will cheer you up a bit. If you want cheered up, and I hope you do, please mail me at cameronstevenson@btinternet.com
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