I’ve been asked this question so many times. Which is hardly surprising really, when the common perception of CFS/ME is that people who have it spend their time in bed or on the couch sleeping and napping. Or that even if more active they take regular daytime naps and sleep for long nights.
For me – this has never been the case. I rarely sleep during the day and my night time sleeping is often disrupted and mostly short. As I’ve mentioned before I never really went through the phase 1 crash stage of CFS/ME and it is mostly at this stage that people’s physical and mental energy levels are so low that they can do nothing but sleep and try to rest.
If I look back to pre-CFS/ME days I’ve never been a big sleeper. I went through various periods of my childhood when I didn’t sleep well. When I was a teenager and snowed under with school work or revision that I’d left too late I often woke early to get on top of things. I even had a strategy before I went to sleep of banging my head on my pillow the number of times that matched the morning o’clock time that I needed to wake up – so 4 times meant I woke up at 4am. Bizarrely this very weird habit usually worked! At University I always noticed that after a night out I would wake up a good 2 – 3 hours before my housemates. I often woke early during my PGCE and whilst teaching and would come down at 5am to mark or plan. It seemed during this period of my life that the day simply wasn’t long enough to get everything done if I woke at a normal time.
I guess reading all of that in print it’s actually hardly surprising that my body had had enough! That to expect longer hours of sleep just because I now have a condition which has fatigue in its name is maybe a bit much to ask of what seems to be a finely tuned determination to ‘do’ rather than sleep!
One thing you often read about CFS/ME is that sleep is unrefreshing. This is very true for me. I can’t remember the last time I woke up feeling like I’d slept well and was ready to tackle the day. I rarely sleep for longer than 6 hours and my morning often starts sometime between 4.30 and 5.30 which makes the day very long and my symptoms much more noticeable. Being in a state of deep rest enables the body to do its thing and repair and to be honest with my sleep as it is it doesn’t feel like my body is getting the chance to do this. It basically feels that if I could just get my sleep sorted I could progress much faster along the recovery path.
Working with my Nutritionist and Psychologist we have identified a number of things that contribute to my bad sleep. High histamine levels, unbalanced blood sugars, adrenal glands/cortisol levels, liver and gall bladder function, digestive function, hormone imbalance are all things that can disrupt my sleep along with anxiety or just worrying and overthinking. Alongside all of this seems to be a nervous system that has become so wired from hormonal changes and just being ill, that it no longer feels safe to sleep well. When I first started working with the OHC my nervous system was so on edge that in the period when I was going to bed and trying to fall asleep even the sound of a light switch being turned on in another room would make my body jump with an adrenaline rush.
My sleep pattern has changed repeatedly over the past 12 months. Usually falling asleep isn’t a problem. The exception will be if I my system is particularly wired going to bed – in which case I become ridiculously sensitive to noise which often keeps me awake. Or sometimes I find it hard to fall asleep if I’m worrying about something. Mostly though staying asleep is the issue for me. If my system is wired and noise sensitive I’ll often sleep lightly and will wake repeatedly during the night. Even if I’ve fallen asleep easily though I can then wake up at any time and may or may not be able to fall back to sleep. It may take up to 2 hours or it may just not happen at all. If I do sleep through my body usually wakes up after about 6 hours – as if that’s as much rest as it can cope with.
So what have I tried to deal with this and get as much quality sleep as possible? To be honest the list is endless and ever changing as something might work for a while but then might stop working or even begin to add to the problem.
- Hot bath with Epsom Salts (Epsom salts are good for muscle and nerve relaxation) a couple of hours before bed. Worked for a bit but then my system seemed to become sensitive to the heat which added to my wired nervous system. I still use Epsom Salts but usually in the morning.
- Relaxation before falling asleep. Again this worked for quite a while but then I found that my body became almost too relaxed which my nervous system again seemed to find unsafe. It would jump me awake just as I was dropping off and I would then be awake for a couple of hours whilst the adrenaline drained from my system. I now do a Deep Sleep Relaxation using the Calm app about 2 hours before I actually turn off the light.
- Increased physical activity. I’ve noticed that for me at the stage I’m at in recovery if I do more physical activity within my energy limits I often sleep better. If my energy use is mainly cognitive I often don’t sleep so well. From what I understand physical activity diverts energy from the nervous system which allows better quality sleep.
- Late evening snack to balance blood sugars – I have oatcakes and nut butter which seems to work. If I do wake up because of low blood sugar falling back to sleep is pretty impossible unless I have a nighttime snack.
- Eating balanced meals throughout the day with enough protein. Not eating your main meal too late at night.
- Staying away from alcohol – ideally completely but definitely in the evening. This is a sure way to mess up my sleep and if I want to drink I have to balance the likelihood of a poor night with the benefit of having a drink.
- Not having caffeine – sounds obvious but it does make a difference. I avoid caffeine completely now.
- Blackout curtains – simple but definitely helped.
- Keeping the room temperature comfortable. I also sleep with a duvet and a sheet so I can throw off the duvet if I get to hot.
- Low level lighting at night to let your body know it’s time to wind down. I try to do this as much as possible and do find bright light at night very harsh.
- Stay away from my phone for at least 1 – 2 hours before bed. This definitely helps. I can feel my nervous system getting wired if I try to use my phone before bed plus there’s the blue light from the screen too.
- Avoiding watching overstimulating TV before bed – I loved the Handmaid’s Tale but it really did me no favours when it came to falling asleep!
- Avoid difficult conversations before bed. I always try to put things that I think may trigger anxiety on hold until the morning. Definitely helps but not always easy!
- Trying to keep your mind as calm as possible during the day. It seems that the more active my head is the more my brain has to process during the night and the worse my sleep is. Meditation definitely helps, along with tools that interrupt unhelpful though processes. Definitely work in progress for me!
- Asking my family to keep the noise down once I’ve gone to bed. I hate doing this and it’s also hard to gauge what will wake me up and what won’t as it varies depending on how calm my nervous system is. However it does help.
- Air filter. I’ve literally just bought one so have no clue how successful this will be but my Nutritionist has been suggesting for a while now that it would help with histamine and toxins so I’m giving it a go.
And then there are the supplements. Most of the ones I’ve been on have been with the purpose of easing symptoms and improving sleep so I guess that I could pretty much list them all. Given that, I think supplements need a separate post so that I can go into more detail about why I took each one and how it helped. I’m conscious that my last couple of posts have been pretty lengthy and texty so am trying to keep them a little shorter. Plus to be honest the downside of setting up Breakfast&ME has been the extra mental energy use and at the moment my system is crying out for me to switch off my laptop and go for a quiet walk in the countryside. Listening to my body is not something I’m great at (another blog post for the future) but it’s pretty much shouting at me so I think I’d better listen!
A random cat pic – just because she makes it look so easy!