Health updates - Summer 2017

So it's been a while since I've updated the blog with any health news, and as always things are progressing slowly while the journey to receive any suitable medical care is dragging behind -and it's a constant battle to keep up against the increasing de-conditioning. 

Disability Aids

I suppose the main thing has been that I finally applied, and successfully managed to get, disability payments. It's still means tested, but not as harshly as job seekers, so I get a tiny bit more than I did on job seekers (Bicky works so I'm accessed on that of course). Most importantly though, it goes straight into my bank account. They also just sent me a free travel card, plus companion! Didn't have to apply for it. Delighted. 

I also applied for, and received, a blue parking badge. The rollator doesn't fit in the boot unfortunately, so it can be hard to get it out from the back seat (space wise, between cars). So feeling like an absolute king with all my extra space and rollator. Outa me way, bitches. GP was shocked I hadn't already applied for one, making me feeling an utter gobshite (seriously, there's needs to a how to guide for disabled adults!).

She also said I should also really apply for something called a primary health certificate -they are hard to get, will require a  medical assessment and probably an appeal, but she thinks I will get it and should have one. I've only actually heard that term for the first time a while ago, but from what I gather it makes applying for things (like disability parking permit) a lot easier... Had one of those moments of "Ah, I am so disabled". Which sounds ridiculous -I fucking write about disability for goodness sake, I just completed an art piece for an exhibition on the subject of chronic pain. My social welfare payment is called DISABILITY. Yet and all, when I'm with a GP or at a physio assessment, I'm almost... shocked, I guess, taken a back when they refer to it. I'm not in denial really... I guess I'm just dumb? LOL. Or used to it. Yeah, it's probably that.

Mobility aids 101: trough crutches VS. rollator

Whatever my decision - Mobility aids need pimping up. Always.

I've been trying my best to stay mobile, or partly mobile at least. I've been going to the pool and gym when I can -averaging only once a week so far unfortunately. It's painfully slow and annoying, but I have to accept that and pace. I like the treadmill, as I can walk while holding on to the sides. I don't like the increase in heart rate though (my resting heart rate ranges from 1110-130 due to suspected POTS). I increase the gradient so that my knees are being worked on (like with walking the pool). My knees are my biggest problem at the moment, and my doctor has said I should be working on this the most for the time being.

For a while now I have been contemplating picking up some more aids. The cane is only helpful for good, sometimes medium days. It's of no good to me when one of my knees is playing up and I need to elevate that leg, and doesn't help with practical things like carrying a handbag or when I'm really dizzy from low BP (POTS/ dysautonomia issues).

So I have two options...

One I've mentioned before, both in posts and on the Facebook page - Smart Crutches. These are basically trough crutches, meaning the part on the arm is like a trough shape. They give much more support to patients who have issues in their arms (like with that of EDS, as any of our joint can dislocate and partially dislocate). They're quite liked among the EDS community, so it was the first thing I thought of. They would be perfect for bad days, as rather than the wheelchair, I could still stay mobile (assuming I can walk to some degree) and have support on both sides of my body (instead of one, like with the cane). Also, if I injure my knee, I can use the crutches to hop.