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.

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