Yesterday was calm. I spent the day snuggled up with Lilou playing Final Fantasy until I picked Dyllan up in the evening. A hairy journey to say the least as I had to go to Ventnor.
Today I’m very tearful. I have days like this a lot, where I spend every second of the day fighting tears. I keep losing it as MS is in the news, talking about something we’ve known for years and branding it as a “breakthrough”. Give me a break. What they don’t say is that HSCT doesn’t work for everyone and a lot of people have died going through it. Even people I know. Saying that, any exposure is good exposure. I just await all the people sending it to me etc saying “Look you can be cured!” It’s not a cure at all.
I look back at how well I used to deal with my disease. People telling me I was an inspiration and how amazing I was, although I never believed it – and still don’t. But my disability has got worse and still declining. My mental health going downhill paired with my MS and arthritis going downhill has been a recipe for disaster, and my curse of extreme self awareness realises it’s no wonder that I’m in the state that I am now, even without my previous history. There are many people out there far worse than myself though so then I put myself through extreme guilt for feeling like I do. My body often is screaming in pain but then so is my head, telling myself to get over it. That used to be a positive thing, now it’s a very different almost abusive voice in my head rather than the encouraging ‘you can do this’ voice.
I’ve never liked myself, but I miss that person I was like crazy. I hope I can meet her again.
I keep thinking of how to plan all of this out and I’m totally lost. I feel so completely overwhelmed with everything I don’t know where to start.