Archive for the ‘Blog’ category

My experience with Restless Leg Syndrome

July 22, 2015

Believe it or not, the cat is the one who made me realise that I have Restless Leg Syndrome.  It had built up gradually over the years, I suspect, and I was used to the fact that I would have an irresistible urge to move my legs around while I was in bed at night.  It wasn’t until we were curled up watching TV one evening, with my legs up on the sofa and the cat sitting on them, that I realised that I really, really wanted to move my legs, but I couldn’t without disturbing the cat.  (It is amazing how much humans will do in order to avoid disturbing the cat.)  Then I thought, it’s the evening, I’ve got my legs up, I have that horrible urge to move them, hang on a minute, I know what this is!

RLS is a tricky disorder to treat.  All of the medication options are the sort of drugs that are not to be taken lightly, with a high rate of side-effects and/or tolerance/withdrawal problems.  The doctor tried me on ropinirole, which affects dopamine levels, but oddly enough it just made it worse.  Anti-epileptics such as gabapentin (Neurontin) or pregabalin (Lyrica) are popular, but I hadn’t done well when I was tried on gabapentin for nerve pain, and the horrendous withdrawal I experienced from it is actually when the RLS started.  Opiates and opioids are also commonly used.  I haven’t been able to tolerate opiates such as codeine since I had my gallbladder out in 2012, and while I do take the synthetic opioid tramadol for pain, I can’t use it at night.  Benzodiazepines are another option.  Those work for me, and I often use diazepam as a muscle relaxant in combination with tramadol for pain as well as very occasionally using temazepam for insomnia.  However, I wouldn’t want to take them every night due to the very high risk of tolerance, which is where they stop working unless you keep raising the dose, so that eventually you end up on a sky-high dose of a drug that’s no longer working and have a hellish withdrawal to go through.

Thankfully I was in a good RLS group on Facebook where people discussed iron.  (Well, mostly a good group.  It was prone to people barging in trying to sell quack products such as copper bracelets, but they were eventually dealt with.)  It turns out that RLS can be a symptom of anaemia, and iron supplementation will relieve symptoms for a substantial number of people.  One of the irritating things about having ME/CFS is that so many of its symptoms overlap with those of other conditions, such as anaemia, and another irritating problem is that this makes doctors far less likely to go through the diagnostic procedures for other conditions.  They just wave you away with “it’ll probably be the ME”.  I had the symptoms of anaemia written all over me, but fatigue hardly looks unusual when you have ME, and I was getting doctors telling me that it was perfectly normal that my lips kept turning blue!  Interestingly, my new dentist has been spotting various signs that I’ve had anaemia, so I’m glad someone can notice it.

The next problem is that doctors are willing to run blood tests, but the NHS reference ranges for anaemia are on the wimpish side.  In most countries, they will take action if your ferritin (iron stores) is below 25 or 50mcg/L, even 75 in some countries.  In the UK it’s a mere 12.  Mine was 21.  We were stalled until a kind person from the RLS Facebook group sent me an article about how your ferritin should be over 75 if you have RLS.  I printed it off, sent it to the GP, and she prescribed iron tablets at last.  For some reason she initially put me on one 65mg tablet of ferrous sulphate a day, and when I checked with the pharmacist, she said that this was the maintenance dose, the therapeutic dose was three tablets a day.  I raised this with a GP, who muttered something about how they hadn’t wanted me to get constipated. I assured him that I was capable of working with that particular side effect (which never happened anyway) and really did need to have this treated, and he put me on the correct dose.

Finally, I had something that worked.  Looking back, it’s not surprising that I was anaemic.  I am on two medications, ranitidine and omeprazole, that wipe out my stomach acid, so I don’t absorb nutrients as well.  I had no idea this was the case until I had tried a low dose iron supplement, experienced absolutely epic farting on it, posted on a health forum to see if anyone had ideas, and someone there who’s a nurse explained to me about the low stomach acid problem.  Once I started taking digestive enzymes, which also have a bit of betaine hydrochloride in them, that sorted out the farting issue, and I am extremely glad I had that under control before I started on the prescription level of iron, which is nine times as much!

This, by the way, is why you shouldn’t attempt DIY iron supplementation.  The amount you can buy in multivitamins and such is too low to have any effect on a serious problem, and the prescription level is not something you’d want to be taking unless you really need it, as too much iron is bad for you as well.  So go and get your ferritin tested if you think you may have low iron stores, make sure they tell you the exact result, and argue you it if you have to.  (I can’t find that article about preferred ferritin levels in RLS just now, but this website discusses it to some extent.)  If you do end up on iron, it’s commonly agreed that you should be supplementing with Vitamin C as well, partly to increase iron absorption and partly because it can help counteract the constipation that iron pills may cause.  The NHS doesn’t supply that part, just as they don’t help out if you have low stomach acid, so you’ll have to find it yourself, but Vitamin C is cheap and easy to sort out.

Once my ferritin levels were testing as being above 75, the GP suggested that I go down to one tablet a day as a maintenance dose.  The RLS promptly returned, but it went away again when I changed to two tablets.  Presumably I need a higher maintenance dose because of the low stomach acid issue.

As for the cat, she was eventually persuaded that someone who changes position at night as much as I do will never be a good nighttime cat mattress, whereas my partner sleeps like a log and is thrilled to have her roosting on his ankles.  I get plenty of kitty snuggles in the daytime, never fear.

I’m still alive!

July 20, 2015

Well, it’s five years on, and I’m still using darkness therapy to keep to a 24 hour sleep pattern.  My sleep quality varies, as it always will for someone with ME/CFS, but being able to keep to a good bedtime is something I’m profoundly grateful for.  Chronic pain is a bigger part of my life these days, and for one reason or another I don’t have any pain medication I can use at night, so sometimes that’s a factor in my sleep problems.  I also turned out to be anaemic, something I only realised after developing Restless Leg Syndrome.  It’s always advisable for people with RLS to get their ferritin levels checked, and if their ferritin is below 75 (which is higher than the NHS reference range for preventing anaemia), to get it treated.  Thankfully the iron supplements cleared the RLS right up.

In other changes, I broke up with my former partner three years ago, and am about to celebrate my second anniversary with my lovely current partner.  He came with a ridiculous and adorable cat whom I am equally devoted to.  I could happily blether on about the pair of them for some time, but to stick to the subject of this site, this does affect my darkness therapy routine in a few ways.

First of all, he actually likes using coloured light in the evening, he finds it relaxing, so we have a variety of coloured bulbs scattered about our two flats.  I’ve been using incandescents so far, but have started to experiment with fluorescents and have a colour-changing LED bulb on the way.   That string of red LED lights  which I never knew what to do with has finally found a home, taped up under my kitchen cabinets with a timer on.  It’s easily enough light for coming into the kitchen at night to get a glass of water, and you could even wash up by it.  String lights seem to fare best when set out in a long row.  I had tried just bundling them together to give an impression of a single lamp, but it wasn’t much use, and having them out in a row as they’re meant to be somehow seems to give off far more light.  LED bulbs are so low-wattage that I don’t mind just leaving them on overnight every night, even when I’m not there.

Secondly, he’s quite fond of the dawn simulator for when he has to get up for work, and prefers to have a fair amount of light coming through the window to help him wake up.  So the blackout curtain linings are off, and I am using a sleep mask instead.  The curtains do look nicer with light shining through them, especially if you need to draw them in the daytime for privacy.

With regard to the cat, I need enough light around the place for when her ladyship decides that she wants to rush around as if her tail were on fire just when we’re settling into bed for the night.  She has dedicated spots where she likes to roll onto her back and knock seven bells out of a wrestling toy I wave around for her, but she can dash around anywhere, really.  The red lights in my kitchen aren’t quite enough, since she’s very fond of hiding under the dining table, and she’s a small black cat to boot.  I’m thinking about the options for lighting that part of the flat better at night without having to turn on the overhead white lights.  Also there’s a nightlight by the litter box in my partner’s flat now, as you really don’t want to step in that when blearily wobbling to the loo in the middle of the night.

LED lighting has come quite a long way since I was last blogging, and there are some amazing things I’m longing to try.  There’s more interest in ways of avoiding blue light in the evening too, although it rarely translates to popular products on the market.  I have various shiny new things to review, and a few more on the way.

Considering new lighting options

May 16, 2010

While my faithful GoLite is still going strong, the little white LED lightbox which I bought on eBay for £10 looks like it might be on its way out.  The timer function no longer works, and sometimes the light goes out and the cable has to be wiggled or unplugged and plugged in again in order to get the light back on.  I’ll keep going until it really is dead, but I’m starting to consider my options.

I do prefer having a spare lightbox for the sewing desk, since I hate crawling around on the floor to unplug cables every time I want to change which room I’m lightboxing in, and also because the blue of the GoLite doesn’t go well with sewing.  I’ve been interested in LED lighting for a while anyway because of the energy savings.  The snag is that while the wattage is very low, the price of the bulbs is high and apparently it’s difficult to get a comfortable shade of white.  Certainly the cool white of my current lightbox isn’t something I’d care to light my home with.

So one option is simply to buy another white LED lightbox.  The cheapest I can see is the Rio, which is £50.  It looks like a nice enough little lightbox, but this isn’t like getting a spare one for a tenner.

Option 2 is to get this all-singing all-dancing bulb.  There are various multi-coloured LED bulbs on the market, but the rest are less bright and don’t include a warm white.  This one boasts 8W of power, includes a warm white, and comes in both wide and narrow beam versions.  I could use the cool white or the blue for light therapy, the warm white for general use, and then in the evenings I would have a selection of colours from red to yellow for darkness therapy, which is something I could do with in this room.  At the moment, if I want to sew during darkness therapy time, I have a couple of lamps above head height at my desk and while the room doesn’t get that bright overall, I’m sure there’s some light creeping over the top of my orange glasses.  The total cost would approach that of buying a separate lightbox, especially if I ended up getting it a desk lamp of its own so that it could be right next to me.

Things to consider and/or ask about:

1. How good the warm white is, both in terms of colour and brightness, and whether it will mesh well with the halogen bulbs I currently use for my sewing desk.  I hear that some warm white LEDs these days are pretty decent.  It would presumably be different to those, however, as they’re creating the white light from white LEDs and this would be creating the white light from a mixture of red, blue and green.

2. I presume that even a warm white LED still has a lot of blue in it.  Would using this as a general lamp during the daytime overdo the light exposure, or would it be fine as long as I moved it a bit further away from me?  People can be outdoors for hours without messing up their sleep, after all.

3. Whether the light therapy usage time would need to be ridiculously long.  I know that one LED lightbox I researched ran on 10W, but I can’t remember if that was a white or a blue one.  At 8w, hopefully this would be close, and I could position it in the effection spot just above my eyes, although I’d need to make sure it wasn’t too close in order to avoid glare discomfort.

4. On the other hand, perhaps it wouldn’t matter if the usage time was longer since even the warm white would presumably have a reasonable effect.  This could turn out to be the lamp which you just use as your general desk lamp instead of a shorter burst of more concentrated light therapy.  If I end up simply putting it in the floor lamp which leans over my desk from the left, I’d need to make sure that the light was strong enough to more or less compensate for a 60W equivalent bulb.

5. Wide beam (88 degrees) or narrow angle beam (31 degrees)?  Does anyone know what your average R63 spotlight bulb is?  I’d be happy with an equivalent to that.  Judging from this page, the narrow angle bulb would work well.  You can also read more about the bulb in question here, where it claims that it’s equivalent to a 50W halogen.  That should be sufficient.

Colour tolerance and myopia

May 11, 2010

I’ve mentioned before that my partner really hates coloured light.  I haven’t tried that many colours on him, just the blue lightbox and a range of yellow and amber bulbs, but he has strongly disliked all of them.  My eye specialist has finally given a reason for why this might be the case. Colour, she says, is very important to myopes (short-sighted folks), and the more myopic you are, the more colour will matter to you.  I’m fairly fussy about colour myself, I can’t stand fluorescent light (though that’s probably a case of colour and flicker) and I’m very picky about colours when it comes to reading and tinted lenses, though I don’t know how far that is caused by having Meares-Irlen Syndrome.  I’d be curious to test my partner some time and see how much colour he can tolerate, if there are any colours he finds easier than others, or if he’s only really happy when the light is white or close to it.  I mentioned to the eye specialist that I find yellow and orange light mercifully comfortable, and she said, “Oh yes, yellow light is very soothing for the eyes.”  For reference, here is how myopia is usually categorised:

0 to -3: mild myopia
-3 to -6: moderate myopia
-6 to -10: severe myopia
over -10: extreme myopia (not usually listed as it’s so rare)

Including astigmatism, I’m about -7, so my eyesight’s worse than that of most people but I still know a fair few people who are at a similar level to me.  My partner, on the other hand, is about -19.  Before I met him, the worst myopia I’d encountered was one guy at -12 and a woman at -10.  Several opticians he’s been to have never seen myopia as bad as his, although it’s by no means the worst around.

So his reaction is unlikely to be the norm, and even my degree of fussiness about light colour seems fairly unusual.  To people who have tried different coloured light or lenses, are you myopic, and have you found difficulty in tolerating the colour?

Sleep improving again

April 16, 2010

At last I seem to be out of the patch of mediocre sleep I was having for a while there.  We’re still not sure, but it looks like it was caused by the high-dose multivitamins my specialist has me on, probably the B vitamins in particular.  I’ve halved the dose and am taking them in the mornings only, plus using coloured light bulbs and herbal sleep aids in the evenings again, and my sleep is back to being bang on time and good quality.  I was up and quilting at 7.30 am yesterday!

I’ll probably continue the herbal sleep aids for a few months, just to get the message through, as advised by a local herbalist.  That said, I haven’t taken any supplements at all for the last few days, and I’m still sleeping well.  The current dose is either one Valerian Formula with one capsule of valerian alone, or three capsules total of any combination of valerian and passiflora (my next bottle of Valerian Formula is late in the post).  This is slightly higher than what I was taking before, but the herbalist said it’s still absolutely fine to use for a few months.  Dr Myhill recommends anything up to four 400mg capsules of valerian where I’m taking two, for context.

Using the coloured light bulbs every night is something that didn’t seem necessary when I was having very good sleep for five months, but does make a difference now, although I don’t know if that was just while I was on those multivitamins.  My coloured-light-hating partner is away on holiday for twelve days, so I’ve taken the opportunity to spend this time under low coloured light in the evenings.  I’m still fiddling with how I set up the coloured lightso that it is as pleasant as possible, gives the right amount of light for pottering about my bedroom, and doesn’t allow (much) blue light to creep in around the edges of my orange glasses.  Previously I had the salt lamp by my bed with a pink bulb in it, which produced a sort of salmon-coloured light.

I still haven’t got around to constructing a DIY spectroscope with a DVD and cereal box, as advised by my kind readers here, but I’ve taken the tip to put a DVD by the light source to see if any blue reflects off it.  As expected, the salt lamp produces a little blue light with an ordinary bulb inside it, but no blue light with a coloured bulb.  The yellow bulbs in the hall which I use to light the bathroom are fine too.

I wasn’t mad on the salt lamp by the bed, it was rather dim and too pinkish for my taste.  So I’ve bought a small opal glass pebble lamp and put a 15W pygmy amber bulb inside for by the bed, and put the salt lamp back in the bookcase opposite the bed with its original 15W uncoloured bulb.  The salt lamp produces a pleasant peachy-golden glow which I actually put on about an hour before the orange glasses go on, and I am careful to make sure that I don’t get so close to it that the stray light will get around the edges of my orange glasses.  It looks much nicer with an uncoloured bulb in there, as you can see the variations in colour produced by the salt which was most of the point of getting that lamp in the first place, whereas the coloured bulbs masked that.  The pebble lamp by the bed is perfectly safe even without the orange glasses, and provides substantially more light than the salt lamp did when it had the pink bulb in.  It’s enough that I can pootle around the bedroom and just about see the laptop keyboard well enough to type, but dim enough to be thoroughly relaxing.  I never really used to like those amber bulbs, I always preferred the yellow ones, but it seems that my tastes have changed as I now find it quite a pleasant colour.  We’ll see what my partner thinks when he gets home.

I’m not bothering to put in alternative bulbs in the living room, I’m not in there much in the late evening and I can just turn the overhead lights down low with a dimmer switch.  I’m hoping to move flat this year and I’ll set up a better arrangement then.  I’ve got my eye on those LED bulbs which offer sixteen colours and have a remote control, but right now they’re not very bright, mostly don’t have a warm white, and very expensive, so I’ll wait until I’m settled in the new flat and hopefully by then LED lighting will have improved.

I’m also not bothering to put the orange filter back on the laptop screen, as the orange specs and amber lighting seem to be enough.  I think that the amount of stray blue light that gets to my eyes round the edges of the glasses from the laptop screen is too minimal for me to need to worry about it, especially since I’m generally watching films on the laptop by that point in the evening and it’s thus a good six feet away from me.

Siestas continue to be odd.  I’m still not sure whether I really need them or not.  I’m taking them perhaps half the time, when I really can’t keep my eyes open in the afternoons.  It’s easier when I know I’ll be using coloured bulbs that evening, otherwise I’ve had a few nights where it was difficult to get to sleep the night after a siesta, which by now is something unusual for me.  Occasionally the siesta ends up rather longer than planned, say four hours, which again seems to be OK if I use coloured lights that evening and could go either way if I don’t.

As I don’t think I’ve got around to discussing yet, I alter the time when I begin the darkness therapy by twenty minutes each month in a rough reflection of seasonal variation.  For April, the darkness therapy starts at 9.40.  It seems to be suiting me.  The latest it will start is 10.20 in June, and I’m curious to see whether that will be too short a length of time for the darkness therapy, or whether I’ll just adjust.  Certainly this method makes me feel more in synch with when it gets dark outside, even if I’m not following the local sunset hours that closely (I live too far north for that to be wise).

What my sleep’s up to these days

February 26, 2010

The yellow bulbs in the hall are continuing to work well to light the bathroom, and the salt lamp is now confirmed for staying by the bed with a pink 15W pygmy bulb in it.  I should probably mention that there’s no reason why anyone should get a salt lamp, I just find them pretty myself, and they already filter out a certain amount of blue light (though not all) through being orangey.  It’s odd, the light looks deep pink if you put it on when the room is already lit, and more orange if you put it on when the room is dark.  It’s useful for when I want to sneak out of bed and get dressed when my partner’s still asleep, as it’s not bright or blue enough to wake him up, or as soft background lighting in the late evening.  Most useful of all, the cable has ended up positioned so that the switch is down the side of the bedside cabinet, about as easy to get to from the bed as is humanly possible, which saves fumbling around in the drawer to find the red bike light or similar. By the way, if you do decide that salt lamps are nice and go looking for one, ignore all the nonsensical health claims.  They’re just pretty lamps.

For some reason my sleep’s been a little odd over the last couple of weeks.  It may be because when my partner had a week off, our routines changed slightly.  I set the clock on the dawn simulator so that it would come on an hour later, as he said he wanted a bit of a lie-in but not to end up losing the whole morning.  I was often up and lightboxing before the dawn simulation as my wake-up time seems to be well-programmed, but it seemed to work well for him.  Then we went to bed an hour or so later than usual, which for me is strange as by now you generally can’t keep me up much past midnight however you try.  I’ve also been a lot more tired than usual during the afternoons and evenings, which I am now putting down to the ME/CFIDS having a minor flare.

Now that he’s back at work, I have been wrestling with the problem of my body’s sudden ardent desire to have siestas.  I’ve snapped back into my usual wake-up time with no trouble whatsoever, but I keep getting irresistibly sleepy later in the day.  I’ve tried fighting it for a few days, using the lightbox on a double stint in the morning and/or an extra session after lunch or early afternoon, and putting the little blue LED bulb into a clip-on light (which leaves it fully visible; at 1W it’s not so bright that you can’t look at it comfortably) and putting it by the bed or laptop from 9.30 am to 3 pm.  I’ve known that LED bulb to keep me quite wired at night if used up to 4.30 pm, but it didn’t do a thing for keeping me awake in the afternoons this time.  I wondered about adding a bit of 470nm blue light to my dawn simulation in the hope that it would get the message across to my circadian clock more effectively, and tried setting it for 15 min before and after the start of the dawn simulation.  When it actually came on, it turned out to be much brighter in a dark room than I’d expected, so I immediately turned it off.  I’d still be curious to try a blue or white LED dawn simulator one day.  The only blue one I know of was put together by this guy, and the only white one that’s meant to be any good (there are some cheap ‘n’ nasty things around) is the SRS320 by Morning Sunrise (Sunrise System), which not everyone likes as an overall unit.

I have now given in and realised that my body probably just wants more sleep by now, which can happen from time to time with ME.  I slept 16-20 hours a day the first year I was ill, not that I anticipate going back to that.  But someone on an ME forum did recently tell me that she feels best when she makes herself get about 11 hours’ sleep a day, which she guesses is due to her body’s increased need to do repair work during sleep, so I think trying some extra sleep is worthwhile.  I’m still aiming for my usual bedtime but am not too worried if we end up going to bed an hour later, though I’m occasionally lying awake for a little or waking up an hour before my alarm, something that’s less common for me these days.  The siestas are going OK, they range from 1-3 hours, though I suspect today may have been more like 4.  I originally tried sleeping with the curtains open and then went for closing them so that the room is pretty dark, in the spirit of having a proper sleep.  I think I’ll go back to leaving them open, I don’t want to end up messing up my sleeping pattern by getting my body to think that mid-afternoon is bedtime.  I’ve also gone back to herbal sleep aids at bedtime, since they never do me any harm, I just stopped them because at that point they were redundant.  I may as well get all the sleep I can if my body’s clamouring for it.

So far, my sleep at night is a little more broken as described above, but I no longer have the problem of having to torture myself to stay awake earlier in the day.  My overall energy levels are relatively low at the moment, so I think I made the right call on getting more sleep.  The only snag is that when I don’t remember to turn the phones off for my siesta I get woken several times (this is bringing back how awkward it is to sleep during the day), and when I do turn them off, I forget to turn them back on again!


I’m definitely feeling better with more sleep, at least over the last few days.  I’m taking a fair bit of herbal stuff to knock myself out at night, last night it was one valerian formula, one 400mg valerian, and two 300mg passiflora/100mg chamomile capsules, but I’ve taken that sort of dose before and know that I’m absolutely fine with it, though I probably wouldn’t want to be relying on it long-term.  It’s far safer than temazepam in the short-term, though.  Last night it was mainly because I was concerned that my accidentally long siesta would mess up my treasured new sleep pattern and didn’t want to undo months of work. It took a little longer than my new norm to get to sleep (possibly – it’s really hard to tell), though far less than my old norm, and while I woke up at 7 am, I got back to sleep again.  Having a siesta has meant that I skip the stage of spending the afternoon trying to keep my eyes open, and while I’m still tired and ME-relapsy, I haven’t felt like a dead cat for a few days now.  It seems that I do indeed need this much sleep right now, even if my body has to be cajoled into getting it at the right times.

Up early again

February 16, 2010

I’m still getting used to the incredible idea of being up before other people are.  Yesterday I woke up, got onto the computer, looked at my to-do list, thought, “I must ring the council about that damaged pipe in the main stairwell,” and then realised that it was still only 8.45.  Right now I’ve been up for an hour, my partner is still having a lie-in, and I should give it another half-hour or so before ringing my mother.  I never even knew what time she woke up before.

You know how it is when you are newly and mutually in love with someone, and you exist in a state of delighted astonishment that it’s really happening?  I’ve been like that about being able to sleep at conventional hours, and sleep more deeply at that.  Now I’m starting to come out of the honeymoon period and look more seriously at my sleep and energy patterns.

My sleep pattern is mostly solid to the point of being occasionally inconvenient.  I disgraced myself by falling asleep in the middle of a TV episode last night at midnight, and there have been quite a few times recently when my partner’s wanted to stay up later than I can and we’ve not been able to spend that time together.  I’m getting up at the same time as him on workdays, but he tends to go to bed later (he’s allowed to have a social life, after all, and is generally a night owl) and then pay off his sleep debt by having a long lie-in on his days off.  Maybe we’ll be able to work around this better with practice.

What has been more of an issue recently is that instead of getting more energetic as the day goes on, to the point where I’m bouncing around at 11 pm, my energy peak seems to have moved to the morning and I’ve been sleepier than I’d like in the afternoons and evenings.  One problem is that this makes me terribly anti-social when my partner gets home from work, and the other is that I just don’t like being sleepy for that much of the day, and have a feeling that my overall energy levels are less than they were a few weeks ago.  I’ve been waking at 6.30 and then going back to sleep or dozing for the last three days, although yesterday I gave in and got up at 7.30; no idea why, or whether it’s just a temporary blip, but this is not where I’d like my energy to be, especially since I’ve been even more tired than usual later in the day.

Of course, the ME goes up and down all the time anyway, and it’s been a stressful week, so perhaps that is what’s causing this.  Ten days ago I decided to try a little experiment just before bed.  I’d had my orange specs on since 9, but just before midnight I tried taking them off and putting the twig lights on instead.  These are fairy lights on twigs in a vase by the other side of the bed, and as they’re rice lights rather than LED lights, it’s a soft, warm light which I didn’t think would have enough blue in it to keep me awake.  I was wrong.  I suspect that by now I’ve sensitised myself to light levels, which is great when I’m deliberately manipulating them but means that I have to be more careful about accidental changes.  I missed that sleep wave and the next one, and at four was lying in bed tossing and turning, in the way that used to be normal for me for years but now seems intolerable.  I woke up at the usual time a few hours later, and in the interests of not losing my hard-won sleep pattern, stayed awake.  Sleep deprivation always  makes me groggy and generally worse the next day, and in particular heightens pain.  Usually the pain is a stabbed-in-the-eye-sockets type headache, but for some reason it’s gone for my joints and in particular my hands.  The pain has mostly gone if I don’t overdo it, but it’s still causing enough trouble that I haven’t gone back to quilting yet, and this is a very long hangover from one bad night’s sleep.  Ah well, the mysteries of ME, who knows.

However, this has made me wonder exactly what’s going on with ME and my levels of melatonin/serotonin/other relevant hormones.  I never did find a sleep specialist who knew a thing about circadian rhythm disorders, so I’m going to ask my GP, who is not a specialist in sleep or ME but is generally wonderful, open-minded, and interested in how I’ve been fixing my sleep.  I’m currently going for 11 hours of darkness plus 1 hour of dawn simulation, which is a fairly substantial change from what my body was used to for all those years before.  Perhaps it’s more melatonin than is actually optimal for me?  The general idea behind darkness therapy is that we’re evolved to need 12 hours of darkness and 12 of light in the 24, but I suppose that’s for healthy people, not people whose entire systems are in a mess and behaving differently.

Alternatively, it could be that 12 hours of darkness is exactly what I need, it’s just that I’ll have to go through an adjustment period.  There’s a lesser-known treatment for ME called the Marshall Protocol in which light is almost entirely restricted for the first two years of treatment.  This is done along with other major changes such as high doses of antibiotics, so it doesn’t reflect my situation that closely, but I think it’s worth popping into a Marshall Protocol forum and asking them about this.

I wish I had a nice friendly specialist to consult who knew about all of this.  All I can recall from my reading at the moment is that sleep disorders are the norm in ME, to the point where it’s been proposed that ME is actually a type of sleep disorder, and that morning cortisol levels are low in women with ME, which is where I hope that the dawn simulation (which raises cortisol levels in the preferred way) will be useful.  From what’s happened so far, I am getting the feeling that light and darkness could affect my health quite profoundly, and I’d love to know the best way to utilise them.  I don’t even know how much sleep would be the ideal amount for me, for all I know it’s more than 8 hours.

Meanwhile, yesterday I tried a second lightbox stint at 3.30pm, and I think it did the trick.  I had the odd energy dip, but I wasn’t tempted to fall asleep until helplessly doing so at midnight.  I’ll keep this up for a few days, and if it doesn’t continue to be helpful, I’ll follow my partner’s suggestion of starting the darkness therapy later.  My gut feeling is that brighter daytime light is a better approach to this particular issue than shorter nighttime darkness.