I just realised how slowly I take my life. I can't remember who it was that told me to take it a day at a time, but it was probably the best advice I have ever been given.
The hardest times are the mornings when I wake up with a list of things I need to do during the day, and I feel motivated for about an hour, then the dizziness, and exhaustion comes back and all I want to do is crawl back into bed.
Even though I've got used to how hard I have to push myself every day, it still makes me sad sometimes. And the thing that hurts me the most is the feeling of relief I get at night when I think about how i've got myself through another day, and I can finally allow myself to fall asleep. My favourite time is just as I am falling asleep, when it feels like I am drifting away to another world, where I can escape from MAV for a while.
As happy as I am to be alive, I still get a feeling of emptiness when I think about the things that this illness has done to me. And although I know I'm one of the lucky ones, and I still have a good quality of life, It doesn't stop me feeling robbed of the life I would have had if this had never happened. When I think about the last few years of my life, I feel like something has been missing. Maybe it sounds dramatic, but sometimes it feels like i'm watching my life slip away from me. Unless I get all the answers I need and a cure, then there will always be a gap in my life, and it breaks my heart a little bit.
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