About 2 years into this wonderful world of ME that dastardly symptom by the name of insomnia came knocking at my door. I have asked him to leave on many occasions but unfortunately he has his feet firmly under my table…or bed!
I have never experienced insomnia to this level before in my life and boy does it send you a bit doo lally!
Of course, many of us have had nights when we can’t sleep but imagine how ME patients feel when they are fatigued from the day – even if that has meant they are simply in bed or on the settee but then it comes to night time and it is all whistles & bells! Sound the trumpets, I’m wide awake and no number of helpful tips to keep that symptom quiet works!
Oh, I have heard many, from well meaning people whether they are in a professional capacity or not, varying from –
- Dont sleep in the day – yes this would be absolutely wonderful but ME has rules of it’s own and some days you can do that, other days a shutter comes down and there is nothing you can do other than crawl into bed and sleep. Don’t assume though that the days when we do manage to stay awake all day we can actually then sleep like a baby at night – oh no…no…no…that really is never normally the case.
- Stay out of your head (!) – this was advice given to me and I nearly spat my coffee out! They said that hard as it may be try to stop beating yourself up about not being able to sleep, focus on your breathing and listen to your body. Well, I was listening but apart from screaming pain it wasn’t saying much else! I remember the early stages of insomnia though and it would really wind me up. There next to me was my husband who can sleep at the drop of a hat and snore to kingdom come but I just could not switch off even though my body was desperate for sleep. This made me very angry and with that the emotions start flying and before you know it there is no way you are going to sleep anyway. At some point I decided to not stay in bed. Every night that I can’t sleep I get up and go downstairs and read and just accept that this is how it is. My life is topsy turvy and getting angry about it will only make my symptoms worse and make it even harder for me to sleep.
- Keep to a regular sleep schedule – now this one really was a cracker! Go to bed at the same time, wake up at the same time – yeah that’s easy mind!
- Dont eat rich foods or rich foods 2 hours before bed, dont drink caffeine 6 hours before bed, dont drink any liquid 1 hour before bed – blimey! I needed a check list of when to eat, what to eat, what not to eat, what time was it – oh hello brain fog, come to join the party?!
- Then there’s the “other” suggestions – stretches, massage a certain point on your hand to aid sleep, rub your ears (!) or roll your eyes (eyes were definitely rolling on this one!),
- No screen time, no phones, no TV, no computer – this one is hard as it is time when a lot of “spoonies” are awake and able to talk to each other about how hard it is that we are not sleeping!
So how does Insomnia affect someone with ME? – Unrefreshing sleep is a hallmark of chronic fatigue syndrome/myalgic encephalomyelitis. Sleep plays an important role in human health and well‐being, with its recuperative, restorative, and learning consolidation properties. Unrefreshing sleep is a hallmark of ME/CFS that causes patients to wake up feeling tired even after extended periods of sleep, to experience excessive daytime sleepiness, and to have difficulty falling asleep and staying asleep. Therefore, unrefreshing sleep results at least in worsening fatigue symptoms and adds to the ‘illness burden’ in ME patients.
Many functions in the body are rhythmic. The adrenal gland makes most of its cortisol hormones during the day. If it makes too much at night, you will have trouble sleeping. Evidence has suggested that with ME patients the adrenal glands make too much cortisol at night and not enough during the day. Stress from an infection also causes the hypothalamus to direct the adrenals to make more cortisol.
This is why you will find that ME patients tend to what I call “come alive” later in the evening. Even though ME patients are completely exhausted, sleep refuses to come and we are in this constant state of exhaustion and sleeplessness. Even though we can be bedridden for days, weeks or months, during that time we get very little quality sleep. It is also believed that we are not getting into stage 3 and stage 4 sleep, which are the deeper stages of sleep. So even when we do sleep, we are not getting refreshing sleep.
The sleep deprivation we experience just further damages our bodies. Sleep deprivation can cause:
– Immune dysfunction that leads to multiple infections
– Decreased metabolism
– Decreased blood flow to the brain
– Thyroid hormones suppression
– Temperature regulation dysfunction
– Allodynia – a condition in which normally comfortable touch causes pain or discomfort
Emotionally the tolls of unrefreshing sleep are damaging. . After you have been without quality sleep for a while, your mind really starts to play tricks on you. It is as though I was on the outside looking in on someone else’s life. During these times I am unable to put together a coherent sentence. The unrefreshing sleep causes us to be cranky, moody and I’m sure not a lot of fun to be around during those times. Patience levels are low and socialising is the last thing on our minds.
So what do I do? Every night my husband goes to bed and is asleep within seconds – I swear he has super powers! I sit downstairs with minimal lighting and read…oh how much I read! I am grateful that this does not cause me any real problems as a lot of people with ME cannot read due to the affect it has on them. I used to read on a kindle but shied away from it because of the screen time and also I miss holding a proper book in my hand – saying that though, trying to get comfy and hold a book is a whole challenge for me too as the book can set my hands/wrists/arms off. I read until I feel I am unable to keep my eyes open. Some very lucky and rare occasions this could be midnight, other times it can be 4am or 5am and I have been known to hit 6am before where I feel like I don’t even know my own name I am so tired! So, whenever I feel like I am tired enough I then head to bed. Again, getting comfy in bed is also another challenge because my body is always hurting. I sleep, or attempt to sleep each night with an eye mask on to block everything out and I listen to a very quiet sleep meditation/music on my phone with headphones (not that it would wake my husband if I didn’t wear the headphones!). When the music finishes I leave my headphones in to drown out any extra noise. Sometimes this works, sometimes I don’t even hear the end of the music and drift off but other times I can tell by the feelings in my body that I am not going to sleep – even if I am really tired. So again, I just get back up, go back downstairs and start reading again until the next time I feel I can sleep.
When you have pain on top of all of that it is really hard to get to sleep anyway. I also suffer with restless legs syndrome so that is another factor that keeps me awake – my legs just want to dance!
So that’s it really. Insomnia is a horrible, horrible symptom and I hope one day that it will go away because I really don’t want to play this game anymore. You feel like you have constant jeg lag and just don’t know what day it is but then apart from what I do already there isn’t much else that I haven’t tried.
All I will say to anyone out there dealing with the same is 1) you are not alone 2) dont beat yourself up, just go with it 3) find your own way of coping. Lots of suggestions of how to are out there but normal rules dont always apply to ME and as you know our systems and symptoms are all different from person to person so unfortunately this is something that you have to work out yourself.
I hope you can sleep tonight….I live in hope x
Faith Trust & Pixie Dust xx