I’ve been meaning to write a blog post for a while, my intention at the beginning of this year was to write at least one per month, but that hasn’t worked out. I guess writing regularly on my Creative Writing course takes a lot of my creative energy, plus having multiple health conditions (it’s almost like 'what don’t I have' at this point, haha), and also being very unwell from something which is as yet undiagnosed.
Anyway, I thought that this post can be an update on what’s going on with me, and what a typical day/week looks like for me. Some people might find others talking about their health issues so openly a boring or negative thing, but I see it as educating others on disabilities (sometimes hidden), and also doing away with toxic positivity. I also think that if you don’t want to read this, then you don’t have to :-)
So, for an update – since the beginning of this year I have been feeling constantly dizzy, to the point of feeling faint. These symptoms have worsened progressively since I was referred for PoTS two years ago (yes, really). There have been a few times where I may have blacked out, but I can’t remember exactly. This, on top of my usual chronic pain and extreme fatigue, have made my life extremely difficult. I’ve finally had two out of the three tests needed (a 24 hour ECG and an Echo), but I’m still waiting on an elusive Tilt Table test. Now I’m in limbo – which is something I’m unfortunately used to, but I’ve learned to live with it.
To give you an idea of a typical day for me, everything makes me dizzy. I can’t stand for too long, but I also can’t sit or lie down for too long. I also can’t exercise normally, even mat based Pilates is dangerous in case I black out when I sit up. I can sit down on a chair and use an under-desk exercise bike for a very short time to get my blood flowing, and attempt some light arm stretches. Showering makes me dizzy and more exhausted. Eating can make me almost faint, although I’m certain I did faint after eating an Enchilada last month (thankfully not falling face first into my plate, although that would be a funny image no?) Last month, I bent down to pick something off the floor, and the next thing I knew, I’d fallen into the side of my wardrobe hitting my head hard. I don’t remember a few seconds of that, so I may had blacked out?!
Catching up with friends was already difficult, now it’s sometimes impossible. A lunch date out usually requires a few days of rest afterwards too, although if I feel well enough on the day (and if I feel safe enough to travel by myself), then I jump at the chance. I’ve been wanting to organise a trip down under to see friends in Perth (funded by my student loan, because, why not?) However, as soon as I started looking into it, my symptoms worsened – of course.
The cruel irony of my last comment, I’ve noticed that like with many things to do with my health, that the weather seems to have a huge impact. Dry, sunny days my symptoms really improve - I am definitely living in the wrong country!
I carry on as best I can, but it does get me down. Social media is both a blessing and a curse, a blessing in enabling me to stay in touch with friends, but a curse in the sense that I’m always reminded on what I’m missing out on.
I often can’t sit at my desk to write (although now I am, it’s the first time in a few weeks), so I have a bed desk. A beanbag lap tray desk, and my laptop. It means I can stay on top of my assignments, and the awarded software from Disabled Students Allowance makes the impossible, possible. Dictation software, software to read out books notes, amongst a few other useful things.
I have another appeal court date coming up for my PIP review with the DWP. I asked for a review due to my health worsening since my claim, but although they extended my award by a few years or so, they won’t award me the higher rate, despite having the evidence showing otherwise. It’s stressful thinking of it, but a positive thing in a way, because I get the chance to speak some supposedly unbiased people regarding my health issues. Whoever told you that claiming disability help/benefits is easy, is totally making it up…believe me. If someone successfully claimed it fraudulently, they’d have a very long wait for a payday!
Anyway, I’ve rambled on enough for now. I have a new blog for Shift.MS due out next month, which is about memory and MS. It sounds a bit vague, but I don’t want to go into too much detail now!
Thanks for reading.
Lots of love,
Jo xx
