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.
In my next life I shall be a cat who sleeps anywhere.
I was settling down to go to sleep the other night, and putting my joints in the right positions – and it made me think about how much effort I have to go to at night to get it right. Most people jump into bed, lay in whatever their favourite comfortable position is and go to sleep. But for me, a lot of thought has to go into it, and it still often goes horribly wrong!
First of all it’s all about placement. I have to make sure no joints have too much pressure on them – particularly my hips, knees and shoulders. Sometimes it’s a no-win situation, for example I have to sleep on my side, and if I lay with my shoulder underneath me then the pain builds. However, if I pull my shoulder forward to take the pressure off – it’s likely to subluxate or go into spasm.
Many of my joints have to be bent – particularly my elbows and knees, otherwise they will lock in hyperextension (this is when the joint goes past its normal range of movement) and ‘freezes’ in place. When this happens I have to warm the joint up, and then slowly, and very painfully force it out of hyperextension and fold it back into position. It will usually throb with pain sometime after this.
However, other joints must not be bent, including wrists, and fingers, otherwise oddly they too will freeze in this position. Last night I ended up in a lot of pain because in my sleep the top joint of one of my fingers had bent. The pain in just that one tiny joint woke me up and kept me awake for some time!
Most importantly – with any joint, they cannot get left in the same position for too long, or I’ll be in for a world of pain in the morning. So I have to wake up regularly to turn over, and move each joint in turn. Often a joint gets locked up – usually one of my hips – and I have to turn over and try and drag it over with me which is more difficult than it sounds.
In addition, as anyone that knows me will have seen and heard – I’m always having to crack my neck. This continues throughout the night – with the pressure in the joint building up until it wakes me, and I have to crack it all out which you can’t do very well lying down.
Sometimes trying to solve one issue causes another. For example putting a cushion between my knees help eases my lower back pain slightly. However, on day three of using this cushion I get absolutely horrendous hip pain that leaves me unable to walk.
No matter how carefully I try and keep in the right positions, my fidgeting continues into my sleep and that causes a lot of problems. I cannot sleep on my back, at all – but sometimes this happens, and in return I wake up screaming with burning nerve pain shooting down my leg. I also frequently get cramps, or muscle spasms that make me jump awake.
This is just a normal night – often I have an injury, or a flare up in a specific joint that throws everything out.
So you wonder why I’m tired? People with Ehlers-Danlos Syndrome struggle to get into the final REM restorative stages of sleep. We also tend to wake up naturally hundreds of times a night. On top of that, I suffer from insomnia – and often don’t get to sleep at all until 6:00am – 7:00am.
So no, I don’t do mornings.
Fellow EDSers – do you relate?
Once again it’s not a great day physically. Yes, I know this is a reoccurring theme and it’s dull! I can’t function in the morning though, but drag myself out of bed until one of the girls in the ward tells me I’m mad, and to get back in bed. There is a strict ‘you must attend sessions’ theme, and we’ve all worried all week that if we put a foot wrong they will kick us off, but doing something physical is just completely impossible. A message is sent to the physios running it that I can’t make it, and I fall asleep.
I wake an hour later to the doctor by my bed, checking I’m okay. A bit embarrassing they actually sent a doctor, when this is a quite normal part of the condition.
The sleeping helps, and the next session is relaxation. I’m able to follow it better than the day before and the technique used is called progressive muscle relaxation. You take each muscle in turn from the toe to the head and tense them, then relax them. It’s an interesting taster, but the results would be better at home somewhere in comfort. We’re just on normal chairs – and I tend to need full neck and head support to achieve relaxation.
I then have arts and crafts and continue glass painting. I still find the lady that does it very patronising.
Next up is cognitive therapy, with the theme on stress. No information is given that I would actually find useful on a daily basis. After the session I head back to the ward to sleep again. I wish I could get through a day without this.
Later on I have physio which I enjoy, but straight afterwards we have an hour of sports which is too much at once. My shoulders are in spasm from overworking it in physio, and every sport they have is based on arm movements – table tennis, short tennis, badminton, catch. The physio with us is interested in getting new things, and we suggest more lower limb based exercises (while remaining seated), and possibly something like mini golf which is more of an underarm movement. I play a game of table tennis with a member of the group and it’s much better than the week before! We end with a session of kicking a massive football to each other.
Table tennis Credit: Mishahu
My dad comes to visit me around 5pm, with the idea of going to the friends and family session. I was really pleased they were putting this on, as I hoped they would help explain my condition to him which I have struggled to do. Instead I’m told ten minutes before he arrives “It’s cancelled. Whoops, didn’t anyone tell you?” and so instead we go to the cafe next door for dinner. On the menu they have burger and chips, and that’s it. We order two of them, and are told they only have one. It’s actually worse than the hospital food!
He only stays for about an hour, and I then go straight to bed and am asleep by 8pm. It’s the best night’s sleep I’ve had so far.
Next week I am going into hospital for three weeks, for intensive rehabilitation and pain management.
My Ehlers-Danlos Consultant recommended it and I’ve been on the waiting list for a year. Traditional pain management can be quite sporadic – a session of physio here, looking at medication there and seeing a therapist when it all gets too much a few years later – but on the programme they try and cover everything in the three weeks. They even have craft and gardening sessions as additional sessions.
I’m half excited, half terrified – although the scared bit is about all manner of stupid things. I’m looking forward to learning the proper way to exercise that doesn’t cause damage to my joints, and spending time with people like me. Someone I know with Fibromyalgia went on a similar programme and can now stand longer, and has reduced her medication. So I’m hopeful.
However, the thing I’m worried about most? Sleep. I know, I know, it’s pathetic. But sleep to me is one of the most important things in the world. Because of my exhaustion, I tend to sleep for a long, long time – 12 hours or so, even if it’s not all great quality sleep. My room needs to be pitch black, and completely silent – no clocks allowed, lights covered up. I wake easily, and if I don’t get those 12 hour sleep – I’m a mess. I haven’t been up early, except on a rare occasion since July, when I had to go onto sick-leave, and the programme requires 7am starts. The thought makes me feel sick, because when I get that tired – I struggle to concentrate and my energy depletes, and this is my one chance to try my hardest to get better.
My lovely mum has bought me earplugs and a sleep mask to try and help with the noise/light, but I’m not sure I can sleep with earplugs as they make me feel very vulnerable. But it’s worth a go! My other big worry is about pain. I pay for two treatments a week from a McTimony Chiropractor who also does deep tissue massage. It has been the only thing to ever help with pain relief. And I have to give it up for three weeks. What if I can’t do anything as everything hurts too much? When the pain gets that bad I can’t concentrate, and focus on things. I also hope I’m not going to be the only younger one there – which isn’t a big deal, I suppose – but it’s always nice when you feel a less of an anomaly.
So they are my worries. I hope they are silly and come to nothing, and I really hope this is the start of something really positive. This year I wish to have condition improve lose weight, and get a job I love. That would be a perfect year.
Hope. Credit to Robert Michie
I would say sleep is pretty important to most people, but when it comes to chronically ill people – good sleep is like gold dust. A rare and a magnificent thing (if gold dust is particularly magnificent?). Sleep becomes difficult with a lot of conditions, whether they can’t sleep, don’t sleep well, find it difficult to sleep due to pain, or sleep way too long.
My sleep pattern is all over the place. It’s often a few hours interrupted by pain, often not getting to sleep until 4:00-5:00am. Then I’m falling asleep throughout the day as I didn’t get a good enough sleep. Then every week or so I’ll sleep far too long – sometimes 16+ hours but still don’t reach that final deep stage of sleep – so I wake feeling unrefreshed.
I often have bouts of insomnia where I’m awake all night, and a mess during the day. Insomnia is something I wouldn’t wish on my worst enemy. Whether it’s one night of sleeplessness, or much longer, it’s just horrible and when it happens to me, the fine line between being a bit of a wreck, and being in the gutter shatters, and I’m a cranky, exhausted, mess.
This happened inconveniently for the days running up a wedding at the weekend, and I spent the whole of the ceremony – pretty sure captured on camera as well, desperately trying to keep my eyes open and mostly failing.
It usually causes splitting headaches, moodiness, and the inability to enjoy anything. Your bed becomes all you can think about, and the further away that elusive ‘collapse into bed’ moment is, the worse you feel.
During my teenage years, and culminating in total insomnia during my first year of university, I’ve tried to practise better ‘sleep hygiene’. I have rules, although I often break them! I put these rules together myself from bitter experience, but the Pain Clinic also teaches them.
1) First and most importantly, no sleeping during the day. If you really, really have to sleep because oh no, your eyes are closing and can’t stay awake any more – make sure it stays under an hour. Set an alarm. I tend to find sleeping during the day equals hours awake at night, even if the nap was only brief. This is an almost impossible one I break often, sadly. If you really do have to sleep – don’t use your bedroom due to rule 2.
2) Don’t relax in the bedroom or even read. It should be for sleeping only (and you know, that one other thing!), so your brain connects your bedroom to sleep. This does work; if I walk into my bedroom I usually feel a wave of tiredness. I want to try and get the best sleep I can in that room, so if I have to nap during the day I pick another room.
3) If you’re lying there wide awake – get up and do something. Having said this, if I’m in the tired but can’t fall asleep stage I will often stay in bed anyway. I use this time to drift off and daydream (or night dream?) as I feel this also benefits you. But if I’m wide awake I’ll leave the room and read. (Although I’ll often go on the computer which wakes me up more, so try not to do that!)
4) Turn the clock away from you. There is nothing worse than being unable to sleep, and watching the hours tick away. If you don’t know what time it is, I feel you don’t get into that oh god I must sleep panic so easily.
5) And final tip if you’re hardcore is to try and get a sleep routine. This one I believe would work, but I find it too hard to stick to. I find if I get up early when I don’t have something to do – I fall asleep against my will.
Credit to nioanto
Further rules on sleep hygiene can be found in this article here by Amber Merton.