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!