Paranoid Andrew
18/03/21 23:18
Didn’t have a good night last night. My legs had stiffened up significantly over the last couple of days and got more fatigued. It feels like I’ve got tight knee supports on though I’ve got nothing around them. A couple of spots around the waist have now felt the same. Nerves passing wrong messages again.
The night hit a low point when I thought I may be in the house a lot more in the future and could therefore do with a pair of slippers. Slippers!! My god.
With the different feelings in the legs changing quite quickly over the last few days my paranoia was briefly full on last night that it would continue on a rapid spiral and by the middle of the week I wouldn’t be able to walk at all. A little scary. Ok, more than.
On reflection, which included some early morning reading of the NHS website, I’ve kinda dispelled that now. Yeah of course things could get worse, but not that bad. Well not by Wednesday anyway.
I’m trying not to look at too much stuff out there on the subject. Yesterday afternoon I made the mistake of looking at a video made for MS Awareness month (or week, I’m not sure). It was a highly polished American production and showed various sufferers shouting out how they didn’t let MS win, they all had pretty severe issues and whilst I was very happy for them, the whole shebang did nothing for uplifting me. It seemed simply to be ‘it’s bloody awful, but look at me. I’m happy!’ - and didn’t say anything about the range or progression of the disease for most people. I think it was looking at this that got to me later in the evening - so much for awareness, or positivity.
But it’s so variable and difficult to predict there’s not much point in me worrying about where I’ll be in week, month or year one. Or how damn happy it will make me.
I’m glad I looked at the NHS website this morning. It’s made me feel a bit better.
Again I’m gonna try to continue to avoid general research until I know MY situation, hopefully following my follow up at the Walton Centre. Any future research will be totally UK based - I don’t want to see a single cheerful American telling me how good they feel despite the awfulness. I dare say I’ll have good days and bad days, and I’m expecting most to be good. But I won’t be starring in any glossy videos telling you about it.
______
PS it's always Andy, but Andrew scanned better for the purposes of the title.
The night hit a low point when I thought I may be in the house a lot more in the future and could therefore do with a pair of slippers. Slippers!! My god.
With the different feelings in the legs changing quite quickly over the last few days my paranoia was briefly full on last night that it would continue on a rapid spiral and by the middle of the week I wouldn’t be able to walk at all. A little scary. Ok, more than.
On reflection, which included some early morning reading of the NHS website, I’ve kinda dispelled that now. Yeah of course things could get worse, but not that bad. Well not by Wednesday anyway.
I’m trying not to look at too much stuff out there on the subject. Yesterday afternoon I made the mistake of looking at a video made for MS Awareness month (or week, I’m not sure). It was a highly polished American production and showed various sufferers shouting out how they didn’t let MS win, they all had pretty severe issues and whilst I was very happy for them, the whole shebang did nothing for uplifting me. It seemed simply to be ‘it’s bloody awful, but look at me. I’m happy!’ - and didn’t say anything about the range or progression of the disease for most people. I think it was looking at this that got to me later in the evening - so much for awareness, or positivity.
But it’s so variable and difficult to predict there’s not much point in me worrying about where I’ll be in week, month or year one. Or how damn happy it will make me.
I’m glad I looked at the NHS website this morning. It’s made me feel a bit better.
Again I’m gonna try to continue to avoid general research until I know MY situation, hopefully following my follow up at the Walton Centre. Any future research will be totally UK based - I don’t want to see a single cheerful American telling me how good they feel despite the awfulness. I dare say I’ll have good days and bad days, and I’m expecting most to be good. But I won’t be starring in any glossy videos telling you about it.
______
PS it's always Andy, but Andrew scanned better for the purposes of the title.