Quick post, as things aren’t great.
As those with hypermobility and those who know hypermobility might understand, some days/weeks/months are tougher than others.
This has been my tough week so far. The early summer (21 degrees – go UK!) has floored me with its magnificent heated-ness and I am now a sad, soggy mess if I try to move any more than a few metres. I’ve caught up on some TV, which is good!
The garden has been a little neglected, with family watering on my behalf. I did joyfully notice my peas had started growing though!
Talking about peas…
I had a visit from an occupational therapist last week (I think I mentioned it)
Tomorrow, I take delivery of my first pee bottle.
I don’t know quite how to feel about it. Kinda sad and humiliated on one hand that my body has betrayed me to the point of this aged 33…
Kind of relieved that the inevitable feeling to ‘go’ ten minutes after getting into bed can be dealt with in a different way than either clambering downstairs risking life and limb, or spending an incredibly uncomfortable night holding it in.
I get more ‘toys’ too tomorrow. I’m sure once I’m past the shock, they’ll become helpful and useful. For now, I’m suspicious and slightly aggrieved that I need them in my home.
Anyone else of an age where you can’t quite wrap your head around having additional aids around? Be great to know I’m not alone!
Consultant appointment today. Rheumatology, the purveyors of all things bone and tendon.
I’ve been seeing rheumatologists for about 4 years to try and come to a conclusion about what’s wrong with my sore, bendy, wobbly and fainty body.
Last year I thought we’d cracked it – Generalised Hypermobility Spectrum Disorder and Postural Orthostatic Tachycardia Syndrome (try saying that to paramedics when you’re half passed out…)
It sort of fits. I am quite abnormally bendy (think, putting toe in mouth and leg around shoulder as party trick to amuse some and disgust most)
I am fainty with my heart rate being stupidly high when standing up and only less marginally stupid when sitting down.
My body seems to think doing the washing up is equivalent to doing a marathon. My family disagrees, and gently teases me for my lack of stamina.
But there are odd things that don’t fit.
- Odd tingly, burning sensations.
- Dizziness like hell on earth.
- Having to launch myself out of a bed/chair/car to be sure of getting up.
My rheumatologist is a bit flummoxed by this.
She said I also had ‘brisk reflexes’ which sounded rather good to me! Apparently not.
So I’m trying to stop myself getting caught in the scary dark world of “Dr Google” where everything means death or at the very least total misery.
On the plus side, I did get in to the appointment on time, blood test straight away and had an X Ray all within an hour – fantastic job NHS!
We’ll see over the coming months whether there’s anything to do. For now we’ll plod along as always!