ME Awareness: “If only I could experience consistent nights of restorative sleep, my life in general might be better,” by Russell Fleming | 16 May 2020

Sleep Dysfunction and M.E. by Russell Fleming.

After 20 years, I can report that the most problematic and infuriating symptom I experience relates to sleep – or a lack thereof.

That is not to say that I don’t have a great deal of trouble coping with other symptoms, but I can’t help feeling if only I could experience consistent nights of deep and restorative sleep, my life in general might be better.

Of course, dysfunctional sleep doesn’t involve just the one symptom.

It is a collection of things that combine to mean I do not sleep for very long, experience disturbances when I do manage to nod-off, and wake feeling unrefreshed – as if I haven’t been to sleep at all.

Sleep dysfunction

When I sleep I experience heavy sweats to the extent I will need to add a towel to the top of my wet sheets.

My bedroom is kept permanently cool and even in winter I keep a fan running because I cannot tolerate warm temperatures or any form of heating.

During sleep I experience bladder problems that necessitated a change of bedding up to four times a week (I have carers to help else I wouldn't have coped with the laundry and re-making the bed).

As a result, I sleep on protective sheeting and now wear absorbent incontinence pants (these have helped a lot and reduced the need to change bedding).

I dream intensely, disturbingly. Night terrors are frequent as is sleep paralysis. Every dream is extremely vivid and realistic.

I am often unable to speak or move in my dreams and my dreams tend to harken back to times before my diagnosis involving people I haven’t seen or spoken to for decades. But even normal dreams have an intensity that can cause me to wake suddenly in a panic.

The most frustrating aspect of sleep is the frequent inability to enter deep sleep. It feels like I only ever dream, and it is exhausting.

I often wonder what effect a full night’s sleep might have on my daytime abilities and long for more research in this area. Why am I not prescribed something to help me sleep? It seems such an obvious thing to do.

If I can’t get to sleep because I am feeling discomfort – from muscle pain, etc – then I will get up and move back into the lounge until such time as I feel the chance of sleeping has improved.

Rather than lie there tossing and turning it is much better to get up and wait it out – unfortunately this can occur several times a night and can even interrupt my attempts at daytime sleeping.

Sleep paralysis

Vivid dreams, terrors and sleep paralysis can similarly be managed although if they catch me unaware and I can’t relax into them, then the effects can be very distressing and even result in harm.

Sleep paralysis is the worst as I don’t always recognise it is happening, and if my struggle to get out of the dream-state is violent then it can result in me ‘throwing’ myself out of bed. And then there are the hallucinations…

We’ve padded sharp surfaces in my bedroom because in the recent past I again managed to smash into furniture and the bedroom wall causing cuts and bruises.

Epilepsy

I was originally diagnosed with epilepsy in the early years of M.E. and experienced several nasty daytime seizures in public – one of which occurred whilst driving which wasn’t good at all.

With medication the frequency over the years has lessened, but I still experience seizures during the night on occasion.

I’ll be completely honest however and say that combined with everything else that occurs while I am trying to sleep – it can be quite difficult determining if I have had an episode.

But usually I waken in a much worse mental state of confusion and feel like I have been running a marathon whilst confined. I am more exhausted that usual and feel a tingling up and down my body.

An episode also increases the chance that I will end up on the floor – although I now have sides to my bed to help prevent this from happening – and is often, though not always, accompanied by me having bitten my tongue or coming to with a taste of copper in my mouth.

Sleep ‘routine'

If I do manage to sleep then it occurs in periods of between one to four hours.

Four hours doesn’t happen often but when it does I regard that as good. I aim to wake early and start my working day around 6.00am.

I have always been a morning person and assuming my night hasn’t been too bad I get my best work done in the early morning hours.

I am able to work from home (for the ME Association) during the week and do so until around mid-morning, when I will take a break and need to rest and/or sleep if I can.

Then I work again for a couple of hours before an afternoon rest and sleep which is usually the best sleep I get in any 24-hour period. I will again need to sleep in the evening and again around midnight.

But evening sleep is optional depending on how exhausted I am and how comfortable I can get – so most nights I retire between 10.00pm and midnight which could mean I am awake again in the early hours.

Distraction is key

When waking, distraction is key. Moving out of a wet bed into the lounge while my bedding dries, or covering the wet patch with a towel, and listening quietly to the radio or TV or reading, with a cup of tea.

Sometimes eating a snack can help – cereal or fruit. I might also try and work, but most times I just try and relax and wait until symptoms have died down and I think I can return to sleep.

And then there’s the bouts of insomnia. It’s horribly ironic. I have spent so many years trying to find good quality sleep, that insomnia is a curse. How can a person be so exhausted and yet be unable to sleep?

Insomnia makes everything worse during the day. Extended periods of insomnia can mean I am far less effective at work and need even more periods of rest.

Sleep apnoea

Several years ago, I underwent an overnight sleep study in hospital. It was really useful and helped quantify some of the symptoms I was experiencing.

For the first ten years of M.E. I was underweight as I was when I did the sleep study. I mention weight because this can have a bearing on sleep apnoea.

Since then my weight has slowly increased and, largely because I am generally inactive physically and because I probably eat more than I should for someone who has to lead a sedentary life; I am now overweight.

During the sleep study I wasn't unable to stay asleep long enough for any definitive results (irony!).

But we were able to see that I regularly stopped breathing, which led to a reduction in brain oxygen and caused me to suddenly wake up gasping for breath.

It also explained the intense headaches I was experiencing on waking and sleep apnoea was provisionally diagnosed.

I now use the CPAP machine every time I try and sleep and it provides a really comforting cool breeze. It might have helped the apnoea but it hasn’t helped the other symptoms.

Sleep hygiene?

Health professionals talk about sleep hygiene being something we should all practice.

I have tried hard not to sleep during the day but after so long it has become apparent that the best way for me to manage my M.E. is to rest and try to sleep when my body demands it.

I do ensure my bedroom is kept for resting, sleeping and occasionally for reading. I don’t have other distractions like a TV in my bedroom.

My bed is new, supportive and comfortable. I play storm music when trying to sleep as combined with the cool temperature, I believe it increases sleep chances.

Thunder, lightning and rain together with a fan, while I am cosy in bed, make me more likely to sleep. At least I like to think it does.

In a nutshell

• Staying comfortable in bed is key. Pain and insomnia are two things I need to overcome to sleep. I also can't stand it if my legs touch each other – it causes additional pain and discomfort – so I have a pillow between them to keep them separate.
• Reading before sleep helps me to relax and turn my thoughts to something other than work or symptoms. I used to struggle holding books in bed, and even a book stand wasn't great, so I now use my Amazon Fire tablet and Kindle.

• 

  Having a fan on in my bedroom when I try to sleep helps. Not only does it keep the environment cool, it also provides ‘white noise' which means I am not distracted by other noises from outside.
• Ensuring I eat a snack before trying to sleep increases the chances of sleep because trying to sleep on an empty stomach is not good – and you actually need fuel to sleep. I don't drink before sleep – for obvious reasons – except to take my medications.
• I do keep a healthy snack and drink of water close by help stave off the craving (which I have never understood) for something sweet and to quench thirst when recovering from a nasty episode.
• I have recently found a range of ‘cool bedding' from Marks and Spencer (other outlets provide them too). My duvet cover, sheet, and pillow cases remain cool far longer than normal bedding and it means I am more comfortable.
• Using the CPAP (Continuous Positive Airway Pressure) machine with a full mask every time I sleep has additional benefits. It took me two years to get used to it, but now the cool airflow brings additional comfort. If you are diagnosed with Sleep Apnoea you can be prescribed a CPAP machine free by the sleep department at hospital.
• The quality of my sleep is directly correlated to irritable bowel symptoms. If I have a bad night or bad period of trying to sleep, then nine times out of ten, I will experience several instances of diarrhoea when I do decide to start my day which serves to make me even more exhausted. 
• Distractions help make disturbances less disturbing. I don’t know why I am not (more) of a basket case but I think using distraction is key to both recovering from incidents and relaxing to allow a return to sleep. Being able to read in bed, or move into the lounge, listen quietly to TV or Radio, meditating, even working can help – as can having someone to talk to either online or in person on the phone.

Sedentary life

Having M.E. forces me to live a relatively sedentary life.

I try to be as active as I can but am limited in what I can do physically – and to a lesser but still noticeable extent – mentally.

It may be that if I was more physically active and could leave my home, sleep and sleep quality would improve.

Then again if I could walk for a decent distance without consequence I would be more inclined to do so.

But even when I was last in remission and could do more, the disturbed sleep persisted with the same symptoms and outcomes.

I live alone. My home is well insulated, so I am not troubled my external noise and can manage without any heating except in extremely cold weather.

I think I do all that I can to try and sleep well, but something isn’t right and despite trying every remedy I could find over the years – I still can’t sleep.

ME Awareness Week Monday 11th – Sunday 17th May 2020

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