Medical mysteries…

In the main, I get on with my life in spite of the annoyances that get in my way almost forgetting I’m ‘disabled’. When I can’t open a jar of jam/pickles/chocolate spread and have to hand it to my partner to open. Or when I suddenly seize up midway getting out of the car and stagger randomly a few paces trying to regain some control over my wobbly body.

I’m ‘okay’ with this stuff. (Well, not ‘okay’ but I live with it. It’s not going away anytime soon, so…)

There’s the odd day that makes me face up to my disability full on.

Today was one of those days.

This morning, an occupational therapist came to have a look around the house and see if there’s anything we can do to make things a bit more manageable. Like I expected, the stairs are an issue, so we’re ordering rails left, right and centre to help with the wobbly-ness. And looking at a portable ramp to get my faithful steed (my mobility scooter!) out of the front door a bit more easily.

A few more things were difficult to hear. The bed rail? Well, I could perhaps get used to something to help me get out of bed more easily – coffee and croissants may have been nicer though!

The stuff around toileting was just, embarrassing. It shouldn’t be! We all need to pee. But thinking about pee bottles and toilet rails is so difficult to process. I guess that just brings to mind being frail, not able to manage myself in the way I want to. I’m sure I’ll either get used to it, or say it’s not for me and find a different way. No harm in trying!

After that, a very strange geneticist appointment where my hypermobility spectrum disorder diagnosis has been thrown into confusion once again, as Classical type EDS has been suggested due to my skin type. So more specialised testing to be done. Yay for being a medical mystery!

And a rather depressing phone call with occupational health which finished by recommending I was still not fit for work and there was no adjustment that could be provided until we know the full extent of the issue.


I’m trying not to think the worst. I’m hoping I will get back to work sometime!

So a pretty exhausting day!

Finished off by watering the garden in preparation for grass seeding tomorrow 🙂 little goals, little steps…

I’ll take some photos tomorrow of the progress!

Rheumatology ruminations

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!