To sleep or not to sleep – that is the question

You would think that the mere suggestion within the name of Chronic Fatigue Syndrome (ME) would mean that all we do is sleep, we are always tired – unfortunately that is so far from the actual truth!

It really doesn’t work that way and as with many elements of the illness the rules of a healthy human being do not apply to those of us suffering with ME.

Some of us can’t sleep at all, some sleep for long periods of time – but never when they want to.  So many thousands of us lie helplessly awake at night longing for sleep to come but see the hands on the clock move slowly towards the morning.

For the last couple of years I have had this awful symptom of insomnia which is all too common with ME patients.  My sleep-wake cycle completely changed and I am left feeling like I am living in an upside down world!

Long after my family are tucked up in bed and sleeping soundly I am left with just myself for company along with my many books!  I am very lucky and grateful that at present I am still able to read without too many difficulties.  Some people are not so fortunate.  Trying to get comfortable enough and also to be able to hold a book in my hands without pain is another thing entirely but at least I can read!

There is evidence of sleep abnormality being present with ME which unfortunately is misunderstood by the medical profession.  ME can also cause Restless Leg Syndrome (yep, I have that too!) and sleep apnea.  Of course pain is also a major factor in stopping us from sleeping and you may see people with chronic pain refer to it as “Painsomnia”.

Sleep problems in ME have for many years been known to be caused by disturbance of the hypothalamus gland in the brain, which controls automatic functions of the body.  One of the main problems appears to be that people with ME are often counselled not to sleep in the daytime even if their brain is telling them to fall asleep.  This advice seems to be given out of a misunderstanding that they will not sleep at night if they have slept in the daytime. However, because of hypothalamic disturbance, they often can’t sleep properly at night anyway, so they can then end up even more short of sleep.

Studies have shown that people with ME may spend less time in slow wave sleep than healthy people. Slow wave sleep occurs during the sleep stages 3 and 4, and is the most restorative sleep we can experience.  They have also shown that ME patients spend a reduced amount of time in slow wave sleep and in REM sleep than healthy people. However, there is evidence of a possible link between systematic inflammation and disruptions to sleep cycles, particularly to time spent in slow wave sleep. Systemic inflammation in the body is common among ME patients, and may play a role in the persistent problem of non-refreshing sleep.

The trouble is, these studies and many, many more still have big question mark hanging over them and until funding is provided and thorough research is carried out we are left to our own devices, trying to make sense of it all.

The worst thing can be the stress caused by worrying that we ‘should’ be asleep at night. This stress prevents relaxation and makes it less likely that sleep will come.  I learned this within a few months of having insomnia.  I would like awake, with my husband sleeping beside me, getting more and more annoyed and upset.  Why can’t I sleep?  I am so tired!  It got to a point where I thought I just have to put up with it. This is how it is going to be and nothing is going to change that.  Obviously a lot of things had to change to enable me to live this way – a lot of things my husband has thankfully sorted to enable me to rest when I need to.

No longer could I do the school runs, no longer could I have any real form of routine.  I sleep when my body tells me to and not when I am “supposed” to.  If I don’t sleep in the day then that does not necessarily mean that I will sleep at night – remember when I said earlier that the rules are different for people with ME!

If only it was as easy as not going to sleep in the day too!  I can try to describe it as best as I can but you may not understand.  For me, it gets to about 2-3pm most days and I can feel my system shutting down.  My eyes become very heavy and it is near on impossible to keep them open.  My speech can be affected and I feel like I have pins and needles everywhere. I can often feel like I have been on the booze – I really haven’t!  It’s like this shutter comes down and I cannot deal with anymore interaction. I have to stop.  I have to sleep.  It is not the same as having a quick nap, forty winks etc..it is full blown exhaustion but I have not been running any marathons that morning!  I may have got out of bed (or not), I may have made it to the sofa.  I have made a cup of coffee, watched the television and at lunch time had something to eat.  That’s it…..that is all it has taken to completely knock me off my feet – unbelievable hey!?!  So back to bed I go with my earplugs in and eye mask on and sleep comes for however long is necessary.  It could be an hour, it could be two or three but I no longer beat myself up about it.  I have to just go with my body.  It tells me when I need to sleep and I am lucky enough to have a supportive family around me that allows me to do that.  It isn’t easy giving into it though because I have always been a “keep going” type of person.  I miss out on so much.  A few examples I can think of – Christmas Day I am always in bed by 2pm and miss the rest of the afternoon and sometimes the evening.  My brother-in-law’s wedding, I made it to the main course of the meal after the ceremony then I had to go to bed and didn’t return until well into the evening.  My daughter’s birthday I missed this year – a trip to a trampoline park with a friend and then some lunch.  All of this had to be done by my husband because I just could not get out of bed.  These are all the times that people don’t see – other than my family.  This is what this illness robs me of so no wonder at times I have a bit of a wobble and wonder where I am going to get the strength to keep going another day.

I don’t want to end this on a negative note so I will just say I am okay, I am handling it as best as I can.  If you are suffering then please just listen to your body.  If you beat yourself up then you will make your symptoms worse and will never sleep.  Just go with it and remember there are so many of us out there wide awake in the middle of the night just like you!  Find what works for you and just go with it.

Faith, Trust and Pixie Dust xx

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