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
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.
It’s something that often fills those of us with chronic illnesses with dread. When getting out of bed is difficult, the concept of exercise can seem unobtainable.
I have tried various things over the years, but always found it difficult to do anything reliably and work at the same time.
It’s something doctors put a lot of emphasis on. One consultant even said I should be aiming at six periods of exercise a day, and in return I wanted to laugh in his face.
There is no denying the benefits of exercise. It keeps your joints mobile, it stops muscles atrophying when you have limited mobility, it can help control weight and it can do wonders for your mental health and sense of achievement.
But there are some significant difficulties surrounding exercise as well.
I recently had to stop working. Whether its permanent or temporary, I don’t know but I did want to create a positive out of the situation and use any small gains in fatigue levels to take part in some form of exercise. At least – my form of exercise. I’m never going to be able to lift weights, or jump on a running machine, but I do want to keep my joints as mobile as possible, using gentle methods.
First, I had to be realistic. Any attempts to join any class in the outside world, even at beginners level, has met with disaster. So the most obvious solution was to seek classes aimed at people with disabilities.
The first class I tried was one run at the local university by a sports science professor. He has a room where twice a week he sets up various activities using a circuit approach, and the class proclaimed itself to be for people with disabilities. This made me feel more comfortable – I didn’t want to be the ‘special’ person in the room, I wanted to be like everyone else.
I was disappointed when I arrived in my electric wheelchair to find everyone in the class jogging in a circle to warm up. No one had a stick, a wheelchair – any visible sign of a disability. That’s not to say they don’t have a disability, of course many are invisible – but I was taken aback by the fact they were jogging happily for ten minutes without an issue. They were all middle aged, and no one spoke to me while I sat waiting for them to finish warming up, and then partner up, until one lady walked up and said, “And what’s wrong with you then?”
I usually have no issue explaining my condition to curious people – but I suppose a class proclaiming itself to be aimed at people with disabilities wasn’t a place I was expecting it. I was then partnered up by the second person helping to run the class, rather than a normal participant.
The circuits included activities like an exercise bike, weights, a trampoline, a balance board, tennis against a wall, table tennis, stretch bands, an arm pedalling machine, throwing a ball to one another. All way above my limits, and unfortunately the vast majority involved standing up which excluded me right away. Instead I was taken round to a handful of exercises aimed at the arm, the only ones I wasn’t excluded from outright.
But of course the problem I have is that repetitive movement in one area causes a lot of trouble, so very quickly my arms went into spasm and I couldn’t do anymore.
The rest of the participants were gleefully competing against other teams in table tennis, and how many of each activity they could do without any issue.
Table tennis Credit: Mishahu
I quickly felt the odd one out, and like I was causing issues because I was taking up one of the instructors time just to work with me. I also wondered how I could keep coming – would someone feel like they’d have to partner with me, and then miss out on the vast majority of activities and their competitive fun? I wasn’t able to take part in 95% of the activities, and those I was trying were agonising.
Yet having sat out the warm up, warm down and many of the activities – I still found myself massively impacted the next few days in terms of pain and fatigue, and had to remain in bed.
I didn’t want to give up at the first hurdle, however, so I spoke to a physiotherapist at the hospital who said they were running Pilates in small groups. This seemed perfect – I have always wanted to do Pilates, but general classes just doesn’t allow for my problems. But a physio – who has my medical file, and hopefully a group of people with similar conditions to me would be perfect!
I went on the waiting list for a month and looked forward to my first class.
However, my first session was a case of déjà vu. Everyone seemed to have an ‘injury’ rather than a condition. This is a very different kettle of fish. An injury is likely to cause pain by a specific movements in one area. They all seemed fit and healthy, and just had to avoid certain exercises. I was quickly the odd one out, who couldn’t stand. I tried desperately to keep up, but within a couple of movements I was in agony, shaking and couldn’t keep up.
The physiotherapists assistant stopped walking round, and was assigned to work with me. Even once again sitting out of most of the class, by the time I left I was a mess, and had to spend four days in bed recovering.
I ummed and ahhed over returning, but felt I should – I’d waited so long to work with the physios. I would just have to sit out of even more. Even if I did thirty seconds of the class – that’s still thirty seconds more than nothing!
However, even by further reducing the amount I did and leaving early – I spent four days in bed. The physio then suggested the class was not for me.
I want to exercise, so desperately, but the impact is just too great. I have tried chair-based programmes, or DVDs, but when you’re struggling to get out of bed in the morning, or to shower or get through the day – it just seems unobtainable.
Have you found an exercise that works for you? Please let me know in the comments.