Apologies for just posting about myself & not responding to other people: can’t see well enough to read (& thus apologies in advance for any errors/typos that ensue, too) but am feeling ridiculously stressed about having to go up to the hospital next week on top of some general Life Nonsense & am afraid that Telling People Who’ll Get It really rather appeals.
- I shouldn’t have to go up to hospital at all; it’s care that should be being provided at home. But somehow District Nurses in my Trust have managed to get away with being “notorious for not doing line care”.
- No reply to my complaint about the above. Made almost a month ago.
- Process for getting Blue Badge Congestion Charge exemption sorted is proving ridiculous. Submitted documentation as soon as badge arrived; got email today requesting I email them it. Suspect will be paying CC on Monday because other people cannot do their jobs properly.
- Will need to move phone appointment I have on Monday as going to have to set off to hospital earlier as everybody is now merrily gadding about once more.
- I can’t go up to the department if I arrive early, so we don’t want to leave too much time. But obviously it’s disastrous to be late. Trying to figure this out is a nightmare.
- I’m genuinely worried about my ability to walk up from the basement to the first floor. Not safe to use the lifts, but I’m so much more deconditioned than I was last month that I don’t think there’s any way I can’t use the bannister. Unless I use my crutches, which I hate, because they’re so incredibly painful to use. I basically cruise like a toddler - or sometimes bum-shuffle (when at home, though I HAVE had to when in public: mercifully unwitnessed other than when demonstrating it for physios) - rather than use the sodding things. My wheelchair (clearly not stair-compatible, but as I’m bimbling on about mobility aids) is too heavy for me too use independently - it’s an NHS-issue “lightweight” one that’s over a decade old now & weighs around 28% of what I do. It’s also too big for me, thanks to the person who measured me stuffing up EPICALLY - she wouldn’t admit to her mistake either, so she’d only go one size smaller when I came to collect it, not the 2 sizes down she needed to go for it to fit me properly. And I weighed more at the time too... so yes, anyway, I hate using mobility aids & have worked so SO hard not to (& flatly refused to in the hospital last summer, much to annoyance of physios until they actually assessed my upper limb joints & conceded that I might have a point - but if I fell I was going to have to use one) but think I may have to use my fecking crutches because I’m so sodding deconditioned I don’t think I’ll cope otherwise. But then I’ve to clean the sodding crutches. Maybe I could wear gloves just for the bannisters?
- Exactly how horrifyingly deconditioned I am was rammed home today when I tried doing a ballet class over Zoom. I’ve not been well enough to dance for actual years. And spent most of last summer in hospital. With a whole “ok so my body tried to kill me” situation at the start of July. From which I’m still recovering, really. But I only managed the opening exercise; pliés; first tendu exercise; & most of the second tendu exercise. While it is an intermediate class, professional dancers choose to attend it, so even the opening exercises are demanding. So saying I managed better when I began ballet (5 months after reconstructive surgery on both knees) isn’t best direct comparison - but I did WAY better when I went back to it a few months after 2 major surgeries (3rd lot of work on my L knee followed by having my appendix out...) in a fortnight. I knew it wouldn’t be easy, but I was really shocked - & genuinely a wee bit scared - by just how bad the pain & fatigue was. Obviously my permaspasmed muscles haven’t any of them relaxed though. Not sure how that works.
- Fairly desperately need some up to date physio input really. Actually had a dream about doing hydrotherapy the other night... No idea how/if it can be arranged though & fear without it things will just keep getting worse until it actually IS safe for me to leave my house other than on my hospital jaunts. And that I might not be able to pull things back. I have worked desperately desperately hard for years to stay walking despite the fact it is difficult & painful & exhausting because with one of my disabilities if you don’t use it you lose it. And if you decondition a really common comorbid condition (which I have) is inevitably exacerbated & atm I’m able to be treated with lifestyle measures & a single medication - over the maximum dose, but only the one drug, I’d very much like to stick with that.
- I need to get myself together & open the packages containing my basic cloth mask & my fancy filter one & wash both of them so it’s definitely done ready for Monday. Am worried about how I’ll manage with the filter one, though it’s not valved, so it’s - supposedly - easier to breathe through. I was ok with the paper mask last time, so I guess if I find that by the end of the car journey my lungs are in a tizz I can ask to be provided with a paper mask. Can always neb before I go, I suppose.
10. The idea of keeping on exposing myself to the virus like this once a month really scares me, frankly. And because of (1) it makes me really very cross.
(And while I’m here, in other whinges: had email from Lovely Admin to say Superspecialist is planning to ring me at some stage this week, about the surgery I don’t think I want to have because the idea freaks me out, so am hoping he’ll say I’m not a candidate; my psoriasis is somehow managing to be bonkers despite current medication & think probably need to see dermatology but, well, Covid; am really q cross with respiratory team for sitting on my DXA results for almost a year, then not actually doing bone health team referral, & if they’ve still not done it when I check again tomorrow I think I’m going to complain because my spine is wrecked in other ways so I really can’t be doing with osteoporosis as well - particularly not essentially caused by people not managing my care properly; & am increasingly worried about just how bad the impact on my health is going to be of having to delay various things - not too worried about my regular ECHO having to wait as not having symptoms, but jaw surgery that’s been put on hold as exhausted all conservative measures & then needed to wait for max-facs to return from sabbatical this month [ahahahahaha] as not only did oral surgeon want max-facs input literally only one person would do, apparently [because I’m A Special Creature].)
Apologies for this being so long (has taken an awfully long time to write) & so completely self-absorbed. Everything is rather jumbled in my head over this & I don’t have anyone else I can talk to about it - really don’t want my Daddy to know how worried I am. Hoping I might sleep having written it out, but don’t expect anyone to read/reply. Because it is stupidly long & more importantly, generally quite stupid & inconsequential nonsense. Sorry.