May News Round-Up

May News Round-Up

I had so many plans for May – which is Ehlers-Danlos Syndrome awareness month, and it’s just all gone by in a flash of bad health, hospital appointments and glass making.

Fused glass making is a new hobby I’ve got into, and I’m really enjoying it.  If you’re interested in seeing my new makes I have a facebook page and a Folksy shop (the UK equivalent of Etsy). I’m also running a competition to win a Dotty Suncatcher at Facebook as soon as my page reaches 100 likes.  It’s difficult starting a new page from scratch, so any support there would be really appreciated.

Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant

Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant

I’ve been making jewellery for awhile, and have wanted to try glass making as something that would go nicely with it (i.e. making pendants/jewellery out of glass), but also being able to branch into something different like dishes, candle holders, etc. I find the jewellery making market quite saturated, and difficult to stand out. Not that I would ever be well enough to make a business out of my crafts, they all remain hobbies, but it’s still nice to sell the odd thing to be able to pay for my glass or beads!

I’ve spent most of my month having medical appointments, including having some awful tests on my bladder – which I will never ever have again. They all came back clear for blockages/cysts, which means it’s down to spasms probably caused by the Ehlers-Danlos Syndrome, so the next step will be medication.

I’ve also been to Cambridge to visit the biggest sleep specialist clinic in the UK.  I’ve had problems with my sleep since I was 15 – from severe bouts of insomnia, sleep patterns all over the place, horrible levels of fatigue, day-time sleepiness, and unrefreshing sleep.  I got put in the wrong clinic – I should have seen the consultant as it’s the EDS causing the problems, and the autonomic dysfunction and adrenaline issues that go along-side the condition.  Instead I got put in the nurse-led insomnia clinic, where they give sleep hygiene advise, such as go to bed at the same time, have a dark room, etc.  I know.  I’ve had this problem for twelve years, I’ve tried all the basics.  This visit was an end-of-my-tether, absolutely desperate need for real medical help.  Luckily the nurse did seem to understand my point, so I’m going back next month for a sleep study test which will hopefully be a start, at least.

For the last year I’ve been trying so hard with exercises tailored towards my condition.  For sometime I’ve stumbled along seeing physiotherapists who know nothing about my condition, and having a six-week block of hydrotherapy every few years.  So sometime ago I decided to put my foot down, and get some real help.

I found a physiotherapist who specialises in EDS, a rarity indeed.  His clinic is in another town, but the way he does things means I don’t have to visit that often – he gives me lots to keep going on my own, and does progress checks.  I also started doing 1-2-1 Pilates sessions.  I’ve tried this a few times – joining a class, or going to the physiotherapy-led Pilates sessions at my local hospital.  Both were total disasters, and were aimed at people way healthier than me. Even the hospital ones which I thought were for people with injuries were awful – as most people in the sessions had one problem area – a bad knee, a bad shoulder.  Sadly that’s way above my level, as I can’t stand for more than a few seconds, and have problems with every joint and muscle group.  So I would just end up half-collapsed in the corner, rather than having effective assistance.

1-2-1 has been great – the instructor has tailored everything towards my condition and problem areas.  It’s all on the mat, so no standing at all – and she breaks everything up so I’m not concentrating on one area for too long, which always leads to a flare up.  What I do is very basic compared to a healthy person, but between the physiotherapy, pilates and more regular hydrotherapy, I’ve had lots of improvements physically – more muscle control and strength.  Sadly it’s not translated into any pain relief at all, which has been incredibly frustrating as that’s obviously why I’m doing it.  No one can tell me why it hasn’t helped in this way, but I’m not going to give up – although it really should have helped even a little by now, so I’m not sure it ever will.  Hopefully it will stop things getting worse, and help prevent additional injuries though, so it still has a place.

My last piece of news, good this time, is that I’ve now completely given up my huge vice – Diet Doctor Pepper for just under six months.  I’ve been trying to kick that habit for years, so I’m thrilled.  I’m now a water and ice kinda gal.

So that was May.  Hopefully June will bring more glass making, less medical appointments and lots of warm weather.

Parking at hospital raises blood pressure!

Parking at hospital raises blood pressure!

Blue Badge parking is a fantastic invention, and makes life so much easier for people, but there are often places where there simply aren’t enough spaces for everyone.

In my town – it’s at the local hospital.  Parking has been an issue there for years, with the hospital regularly moving external departments to the same main site – but never increasing the parking.  The worst place for this is at the wing that contains physiotherapy, the various gyms, hydrotherapy, prosthetics, etc.  I always arrive early to my appointments – and it’s luck of the draw that you either catch someone leaving, or have a long wait.  The way the car park is laid out there isn’t an easy way to queue up, so people dot about and just have to keep an eye on who is next in line.

So today I had hydrotherapy and arrived about 20 minutes early.  I waited, and waited.  After about 15 minutes, a lady crossed the car park heading to her car.  I pulled out, signalling to make it clear I was waiting – when a new car arrived, and rushed in, passing me.  I couldn’t have pulled out further as it would have blocked the lady from leaving.   I head towards the space, as he starts to back in.  I beep, and wave to get his attention.  He ignores me, and parks.

When he gets out – I ask him why he did that.  He shrugs, and said he didn’t see me.  If someone doesn’t see a car in the middle of a carpark, signalling and beeping – they shouldn’t be driving.

So I wait, and wait – my appointment time passes.  There’s nothing I can do, no where else to park.  Eventually another lady moves her car, and once again a massive four-by-four suddenly drives in and takes the spot.  I’m furious.

Again, I ask her why?  I’d been waiting half an hour, missed my appointment time – and there is a queue.  She says her daughter has an appointment.  Right, well no one goes to the hospital for fun?  I explain I do too, and I’ve been waiting like everyone else.  She then looks at me and says “It’s your problem.”

I can’t repeat what I said next.

When did common decency vanish?  Everyone knows parking is difficult at this hospital, and most of the time everyone does their best to keep the system fair.  It sounds like such a minor thing, but in the end I had to park on a verge, then struggle desperately to get my wheelchair out and down the kerb.  My stress levels were high by the time I got to my appointment, fifteen minutes late – which then increases my pain.  It just makes me not want to go the hospital anymore, as the parking situation is so ridiculous!

Credit to ralaenin

Credit to ralaenin


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