November’s been a bit of a weird month, but overall, a productive and positive one. After missing out on really celebrating Samhain on 31st October due to an appointment in London that was then subsequently cancelled (when I was already in London, and with no prior notice…), the month didn’t get off to the best of starts.
Traveling when disabled is never fun and never, ever easy. Let alone when going to London of all places, and not for leisure. It’s one thing to toddle to London for a convention (like Nine Worlds in August… which I realise I never actually posted about properly by writing up part two of the review—oops!) and another thing entirely to trek down for one day. For starters, staying in a hotel for one appointment that’s going to take maybe an hour tops feels a little like extortion, so, it was a there-and-back kind of trip. That would have been fine, had the appointment not been cancelled! Imagine turning up and them, NOPE, sorry, your appointment was cancelled and we didn’t even call, so sorry that you just came all the way here on a train and two taxis only to be told a clinician had called in sick. Yeah, it wasn’t pretty.
That whole thing messed me up pretty badly. It triggered a pain flare and I caught a cold, for starters. Moreover, it really upset me and drained all the spoons I would have needed to pace my month better. So it left me really struggling before the month even started. Fun.
The rescheduled appointment came through a week or so later, for the 1st December. I almost just rearranged it because, honestly, I just don’t have the spoons for this shit! But, I knew it would just be another source of anxiety, so I went ahead and accepted the appointment. Hopefully I can plan my energy better this time now I know that a day in London like that is utterly crushing. It’s also upsetting, you know? London is one of my favourite places and it’s now completely inaccessible for me. I can’t easily go to any of the places I want, having a wheelchair in London is so stressful and now I can’t just hop on the Tube, navigation is a nightmare. I’m usually pretty good at handling all the ways my life has been changed by my chronic illness/disability, but London’s still a sore topic that’s generally left ignored. I can’t fix it, can’t make London magically more accessible to me, and I’m not going to stop loving it any time soon, so really it’s best if we just don’t talk any more.
In other medical news, after being told I needed an intensive course of B12, followed by a course of folic acid (in that order, else nerve damage was a real risk), I needed to schedule in five intramuscular injections with the nurse. I don’t go to my surgery; I’m lucky enough that Dr S comes to see me (in his lunch break) and I can avoid the awkwardness and distress of having to go and be at the surgery. But not this time. Dr S couldn’t do these for me and after a bad experience with the district nurse’s attitude, it was easier for me to just suck it up and go. It wasn’t easy, but at least they’re done, and 3/5 times it was the Nice Nurse instead of the Kinda Bitchy Nurse. Unfortunately, the Nice Nurse hurt when she did the injections.
I wasn’t expecting anything to suddenly change or even improve through the B12 injections—and I wasn’t wrong. No increase in energy, no reduction in pain, no nothing. Sure, my body needs that stuff so that’s a positive, but that’s all that came of it. What I’d like to know more is why my B12 levels were so low in the first place and what we’re doing about tracking it. Buuuut, since it’s one of those things where I expect to have to insist to the Dr that the injections made no difference, it’s not something I’m looking forward to.
Honestly, I’m just really, really tired of trying to approach doctors from a million different angles to get them to listen. And after the rheumatologist said one thing in a letter, another in person and a third, different thing on the phone, it’s hard to know what’s going on or where to start.
The run-up to the holidays is always a mixture of “yay!” and “oh dear sweet gods I’m already exhausted”, but I think that this year I’ll have more of an idea how to pace myself and I know how to prioritise myself and self-care better than I did last year. Aka, last year was the last time I’ll bother celebrating Christmas for the benefit of others, and will just stick to Yule and cut down on any additional stress between then and New Year. It’s frustrating, really, that you only learn how to pace properly, by royally screwing up with pacing to begin with. Because why would this stuff make itself easy, huh?
I’m going to try get into the habit of doing both a monthly round up and a separate monthly round up, hoping that it’ll help me get my thoughts organised about medical stuff and track progress, since I’m pretty terrible at tracking time and sometimes, before I now it, I’ve been meaning to arrange an appointment with the doctor for three months when I think it’s only been a week. Mostly this is because it’s just so damn draining trying to communicate with doctors—especially after the colossal waste of time the rheumatologist proved to be, who then simply left me hanging without even a referral elsewhere or a letter back to Dr S that did any good.
The nicer, fluffier and altogether less irritating update for November will follow soon. (Probably.)