Apparently I’m moderate to severe. I’m 90%+ bedbound at the moment, triggered by migraines as we entered spring. Before that was just housebound.
Finally, managed to get GP appointment — ended up crying on phone to receptionist. They put me on 10-20 mg amitriptyline to try to prevent the migraines. The above is what that did. Considering 5bpm above my baseline generally indicates I’m suffering extreme exhaustion & severe cognitive symptoms, that spike concerned me. Stopped taking after 7 days, 3 days later it finally started falling. Not at norm yet, but did get my first migraine again, so that’s not so good, though that might have been partially due to the PEM from the GP visit;
GP called me in for an ECG due to that spike, telling me ‘come in or go to A&E’ — so went there. ECG was clear, though they want a 24-hour monitor to check the amitriptyline hasn’t done any damage. I have one coming up in 10 days, which will also be used to diagnose me for POTS — heart spikes when standing / sitting up.
Currently, it seems I have heart rate spikes when standing for any significant time, which makes cooking difficult to impossible :(.
I’m going to be going to hospital with the non-emergency transport service, hopefully they’re bringing a wheelchair for me, which will reduce the PEM (payback) from walking around the hospital.
I tried to dictate some of this post using my iPhone’s speech to text functions, but it seems that it doesn’t handle paragraphs in Gutenberg basically at all — the blocks written that way were ‘corrupted’ and pushing the ‘recover’ button just deleted all the text. Dictating is much easier than typing on my phone, but typing on my laptop keyboard is much easier than dictating.
I’m getting married! In the middle of July, in the registrars’ office in the library, with very close family only. Been thinking about hiring a wheelchair to help me get around, but they’re bloody expensive, and I’m in £3000 of debt. Hopefully be able to tackle that, but it is tough, I’ve not been able to do any side work, and I’m mostly just keeping on top of my day job with a lot of effort. New employer is awesome, and they’ve been so supportive it’s wonderful. Old employer let me keep my laptop, which is what I’m typing this on, and what I’ve been working on, which is wonderful, it’s helped keep me sane.
The ME clinic has discharged me because “there’s nothing more we can do for you”, but on my final session they did a ADHD assessment — it was positive for possible ADHD, so that may explain why I struggle to ‘rest’ effectively. Very hard to turn my brain off, so if you have suggestions for ways to relax when bed bound that don’t involve watching tv/films etc, I’d appreciate them!
That’s pretty much it for this mind dump/life update, hopefully I will have some useful information once the 24-hour heart monitor is complete. Might have POTS, might not.