Myalgic Encephalomyelitis fluctuates, everything related to the condition ebbs and flows in terms of severity, duration, and priority. One thing remains constant though, the very annoying issue we have with sleep. You would think that an illness involving constant neuro-exhaustion would mean that I sleep a lot in order to ‘feel better’. Nope. More often than not I can’t sleep when I want to and, as with every other M.E patient on the planet, I have unrefreshing sleep.
When I first started ME Foggy Dog in 2014, Foggy’s Followers got used to me being awake at ‘stupid o’clock’ (usually around 2am), being wide awake and getting on with Foggy work. It was mine and Patch’s time alone – he would sleep and keep me company with his snoring and chasing squirrels in his sleep while I wrote blogs, sent hopeful emails to various celebs, or chatted to Foggy Followers all around the world on Skype (Gotta love different time zones when you have insomnia!). I used to be awake at stupid o’clock 2-3 times a week, on the other days my body stuck to what I had ‘trained’ it to do thanks to my local CFS service. I had stuck to a routine of going to bed at 10pm every night and woke up at 6.45am every morning regardless of what day it was. My body got so used to those hours that even now it’s rare for me to sleep past 6.45am and my body automatically winds down ready for bed from 9.30pm onwards.
Over time, my sleep and sleep disturbances have changed. I only have insomnia 3-4 times a month and it is usually menstrual cycle-related. The way I do Foggy work has changed drastically because of the way my sleep pattern has changed. I rarely find time to do Skype chats (sorry, I miss you too!) and I struggle to find the time to do some of the things that I used to do with Foggy’s fun campaigns. My mind boggles with the fact that I used to work full-time AND run ME Foggy Dog – HOW?! It would seem there were some perks to having regular insomnia 5 years ago! I now, contrary to the advice given to me by my CFS service a long time ago, listen to my body in terms of when to have a nap. I was told not to ‘give in’ to sleep and to give my body a routine. I know I’m not alone in being given that advice. While I do see it as good advice in terms of sleep at night, I think to tell an M.E patient to force themselves to stay awake during the day and ignore what their body is craving is just plain crackers. I often simply cannot keep my eyes open, my body stops functioning, and I need a complete shut down in the form of a snooze in the afternoon. An indicator that I am starting to not function is usually the number of clumsy accidents I start to have ie. cutting fingers on knives, banging toes on door frames, slamming fingers in drawers. Brain and limbs not communicating = accident waiting to happen.
For the uninitiated, ‘rest’ is often not sleeping. Patients are able to ‘rest’ simply by tuning out from what is going on around them. No TV, radio, sitting in a quiet, dimply lit room is often enough to allow a patient to slightly recharge. Whilst rest is essential for patients, sleep isn’t. The reason I say that is that our sleep is unrefreshing. It wouldn’t matter if I had 2 hours of sleep or 8 I would still feel as if I had only slept for 5 minutes. I never wake up from a nap and ‘feel better’. I wake up still feeling like death warmed up but am back to functioning again.
There are also many patients who have hypersomnia, they can sleep for hours on end, particularly during a crash. That is not my experience of M.E sleep disturbance. I think the longest duration of sleep I’ve had since my M.E hit back in 2006 has been around 10 hours. I often read tweets from patients who have been asleep for 15 hours or more at a time.
Whether an M.E patient has hypersomnia or insomnia our unrefreshing sleep remains the same, this M.E symptom is one reason as to why we never manage to fully recharge our energy battery.
and Foggy (OBVIOUSLY) xxxx
p.s Foggy is currently on his way to NZ. He has now travelled 156,147 miles!! This was him horseriding on a beach in Mexico at Christmas!
Foggy is working incredibly hard to raise ME research funding for Cure ME/ MECFS Biobank. He has been disappointed with donations so far. His currently total is £670.13 and he has 5 months left of this World Tour.
Don’t forget to donate – https://www.justgiving.com/fundraising/mefoggydog
Thank you and Foggy snogs xx