Sleep Hygiene Archives - The Chronic Chronicles

May News Round-Up

by The Chronic Chronicles | May 30, 2015 | Daily Life

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.

The Beauty of Sleep

by The Chronic Chronicles | Nov 10, 2011 | Coping Methods, Daily Life

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.