who only by moving can balance

I have for many years now (as previously mentioned in these pages...) used MediMemo dosette boxes. They come as a wee book with pill boxes for individual days, featuring three (re)movable dividers that allow you to change compartment sizes as required depending on how many pills you take when.

I have three sets: the only downside I've found with these is that I break the lids semi-regularly, and so eventually (after much faffing around with superglue) I retired my first set to keep for spares and bought a replacement for everyday use.

A while after starting to date A (I... think?) I decided that actually I wanted two sets in active use, so that I didn't get to late-on-Sunday-night and then have to either sort out a week's worth of meds in a hurry or leave it til the morning and have to do it while sleepy, further delaying e.g. breakfast. This does on the whole work out pretty well for me, with the added benefit that I can choose a time more-or-less at my convenience when my hands are cooperating enough to do fiddly work. (A while after that A's colleagues acquired a 3D printer for general use, so now I get A to print compostable lids for me when I break the original ones.)

However, I have been mildly grumpy for some time now - a year? eighteen months? something? - that I actually take tablets five times a day, not four: half an hour before breakfast, breakfast, lunch, dinner, bedtime. (Plus a bonus oral med every other day or so at least an hour in all directions from any other oral meds, plus a nasal spray, plus any top-ups...)

Which required me to have (1) executive function and (2) manual dexterity First Thing, Before Food, which is on the whole a Bad Plan, or at the least one that has mixed success.

AND THEN. A FORTNIGHT AGO. I realised! That I could take some of the dividers from my set-for-spares! And give myself five compartments each day! So I don't have to sort the breakfast-meds from the before-breakfast-meds every morning while half-awake!

This is working out great and I'm pretty certain I'm being rather more reliable about dosage and timing, so, chalking that one up as a Victory.

My bloods a few weeks ago had T4 at ~10% lower than the test in November, both right down at the bottom end of the "normal" range. A previous screen (~4 years ago) had much more middle-to-average numbers.

Given my cluster of autoimmune conditions, I'm going in for follow-up bloods to screen for thyroid antibodies on Tuesday. If they show up, we'll start treating me with thyroxine; if they don't, we'll keep monitoring. (I actually specifically asked if the thyroid antibodies screen was one it was worth doing, and my excellent GP's response was "good idea".)

This is me doing a relieved flump.

On Friday afternoon I attended an introductory information session being run by the hypermobility clinic. This was useful in several respects (the factoid that the average bendy person needs to be twice as strong as the average non-bendy person to compensate for joint laxity; the articulation that part of the problem is that bendy folk tend to do everything at much greater extension than non-bendy people, meaning we make isolated joints do all the work that non-bendies use entire systems to carry out; the introduction to the set of services other than individual physiotherapy that are available via the clinic), but it also managed to hit a lot of my buttons about how discussion of chronic pain gets framed in the NHS and in the medical world more generally.

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( Resources recommended during the session )

1. I have decided that I probably am sufficiently into the concept of Omnifocus (as mentioned some months ago by recessional) to want something Apple-ecosystem and portable to run it on. I also want it to not be new because I am absolutely vile to tech, sooooo do any of you (preferably of the semi-local variety) have old iDevices you're looking to sell? More toward the "small tablet" than the "smartphone" end ideally, I suspect.

2. In medical/internalised ableism news: ( Read more... )

3. To continue the assistive tech theme, I continue to amuse myself by referring to the SIMless smartphone I use for health-tracking and meds reminders and the like as my Auxiliary Internet Device. AID or AIDe, gettit.

4. Tiny crochet dinosaurs. Plush toys of children's drawings, by Ikea.

5. Food. Things I am vaguely intending to make over the course of the weekend, an aide memoir: sea-spicy aubergines (use the pepper, self) and egg fried rice. Lemon meringue pie, maybe. Bean chilli (pick up the sweet potatoes, & while you're at it repack your washbag). I am still stuck on what to do with the half-cabbage other than cabbage soup (suggestions welcome) but in the process of seeking inspiration I came across smitten kitchen's hazelnut brown butter cake and feel a BAKING coming on (not least because I have abruptly realised that rather than browning just the butter for the salted caramel I could brown all the butter ever when making brownies. Hmmmmmm.) [hello future self P wants you to try Norwegian porridge]

(Turns out I have at least some friends who haven't heard this particular rant of mine before, and I can't face wading through tags to see if I've had it properly already, so! Here we are. Content notes for everything you'd expect in terms of abuse, medical neglect, medical incompetence, terminal illness, etc.)

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Okay, there is Something wrong with my hips and I really don't understand what (and maybe it is my shoulders too idek). What is going on is: as of a couple of days ago my hips are really not liking me moving my legs forwards or backwards particularly. Stairs are awful. The bending required to get socks & shoes on or off is the worst. Sitting cross-legged isn't really possible. Transferring between sitting and standing is also pretty grim. It's taking vastly less time than usual for standing/walking to get me to actually-shaking-uncontrollably (starts in my knees, moves up to rest of motor control particularly hands if I push it) and needing to perform controlled falls.

FACTS:

• I am hypermobile and my hips are Not Great in this respect.
  
• I've been wearing flat shoes and walking a bit more than usual?
  
• I haven't been doing anything terribly unusual in terms of Things To Sit On and in fact have not done any of the really vile stuff involving full days sat on wooden stools in lab.
  
• Sex is not a plausible culprit on this occasion.
  
• ???

Thoughts much appreciated because this is not fun and I don't know what is More Wrong and it is bothering me. I do not like yelping in pain when I try to reach my wheelchair bag or check a clock behind me or take off my damn shoes. It is extremely tedious.

So y'all wanna convince me that I shouldn't discontinue my NSAIDs just because

• I've already been to the GP three times this week and I am bored (by which I mean "super out of cope for managing medical professionals")
  
• there's currently manufacturing/supply issues with both sizes of mefenamic acid
  
• ~it's not that bad really~

... etc?

Like, I have arranged for my pharmacy to text me when they get some more supply in, but I just. It seriously feels like in the meantime least-hassle is (1) stroppily discontinue followed by (2) add ibuprofen in as and when I decide I really do need the continuous anti-inflammatory.

SO. BORED. OF. THIS.

Sickness is not another country.
It's an ocean, with checkpoints on the beaches
and border guards of stone and surf.
And oh, we vessels, we
put in, sometimes, to unanticipated harbour
surprised - delighted - by reprieve.
You, perhaps, may disembark, may embrace land--
but I'm cast off, compelled
to struggle through the storm and pray for calm.