My Body, The Troll

That week when I last blogged? I’d done too much. My body has come up with a new form of payback and I’m not impressed. On top of the normal increase in symptoms, it’s added a high (39-41C) temperature and vomiting to its repertoire.

The first week it happened (starting the day after I last blogged) we didn’t know what it was, but since I couldn’t keep my meds down we got the GP out who diagnosed gastroenteritis. I was a bit confused since neither Johan or my carer had been ill, but went with it. He gave me buccal antiemetics so I could keep my meds and drinks down, and after a week my temperature went back to normal.

The week after that our lovely neighbours decided to play music so that everything was shaking in our flat, including my bed. Despite still being weak from the payback, Johan got me into my wheelchair to find the quietest part of the flat, which ended up being the hallway. The suspension on my chair also absorbed the vibrations, which was good.

Unfortunately the combination of being out of bed and the music caused more payback. Knowing more what we were dealing with now, I went into rest mode and we kept me dosed up with antiemetics and ibuprofen to keep my temperature down. It only lasted 5 days that time but I was even weaker afterwards.

I was just getting over that when I was woken up by loud music playing. It was nowhere near the level of last time, but I had sleep paralysis for a while so couldn’t get my ear defenders on. Once I could move I put them on, but the damage had been done and I had another load of payback. Possibly because the event triggering it wasn’t so bad this one was shorter, lasting just a few days. It still sucked though, and I missed Doctor Who.

I’m now feeling weak but better than when in those payback episodes. I’m hoping to be well enough to watch Doctor Who soon. I have been watching The Great British Bake Off (less thinky than Doctor Who) and enjoying that. My sleep is all over the place and I’m needing a lot more of it than is even usual for me, but after what my body has been through I’m letting it do what it wants.

Other than that I grumbled to the CFS team when they visited, my DLA renewal form has come through (I’m glad it’s not a PIP one), and played far too much of the Kim Kardashian Hollywood game (which I’m finding a lot of fun, even though I don’t like Kim Kardashian).

My normal carer is off so I’ve been having to deal with a lot of new carers. Some have been good and understanding, some less so. I’ve been trying to be awake for at least one care call a day, but even that is hard sometimes. Johan has had to deal with the carers when I’m asleep which hasn’t been good for him, but until we can find a solution to a fixed time call when my sleep is variable (for both autistic and ME reasons) I don’t know of a solution.

Johan has had his PIP assessment. I really wanted to be with him at the time but after the payback I was getting I knew it was impossible. I gave Johan a note to help the assessor communicate with him if he got anxious (luckily it wasn’t needed, but it’s gone in as evidence now) and he said it went about as well as it could have. He’s now checking the post every day in the hope of a brown envelope telling him if he’s been awarded it or not, but they’ve all been for me so far.

I’m a bit fed up of being ill now. It’s been 5 years since I got swine flu, which triggered my ME. The new payback hasn’t helped. I’ll be asking to see my usual GP next week or so to check the temperature isn’t due to an infection or something, and to ask a few questions about other symptoms. I just want to get better, or at least stop getting worse. I’ll get there, but it’s looking a long way away right now.