The same people who assume I feel tired all the time, assume that I must nap all the time to compensate.
Firstly, as I’ve mentioned before I am very rarely tired in the way that you’d imagine. I call that kind of tiredness being ‘sleep tired.’ Instead I am lethargic, exhausted, worn out, fatigued.
When I wake up in every morning, I feel more worn out than I did the night before when I went to sleep.
When I was first ill my sleep patterns were erratic. I would go to work from 7-9am then come home to sleep until I had to go back to work for 3pm. It took me a little while to work out that sleep was actually making me feel worse. I was not waking up feeling refreshed.
Then the insomnia started. I would be awake for hours during the night and then I would sleep during the day to catch up on the sleep I had lost.
I soon realised that this was not a good routine. In fact there was no routine to my life at all, especially when my health deteriorated so much that I had to leave my job.
Just four months into my illness, I started to work on correcting my sleep disturbances. It felt like the hardest thing in the world. Months and months went by and I would gradually bring forward my walking up time by as little as five minutes. I would try to only nap in the mornings only and even when I had nights of absolutely zero sleep, I would try my hardest to stay awake all day and then get an early night.
Years of working on this meant that eventually, some three years in, and I was no longer napping at all. I was awake between 11am and 1am on average.
Over the last two years my sleep patterns have improved even more. I now can get to sleep as early as 10pm and I can wake up as early as 8am some days.
Obviously there are still bouts of insomnia and times I have to get up in the night because sleep just will not come. But I still never nap, because I know how much worse I feel after sleep and how it is rest that my body needs instead of actual sleep.
Alas my No Naps rule was broken over the weekend. It was a poorly one so I came up to bed for some Purple Time/proper rest with no stimulation and I fell asleep! This never happens! I’m not even sure how it did. I must not have propped myself up enough. I am usually so regimented with myself; seeing recovery as full time job.
As a result of that hour long nap I am now incredibly poorly. I’m spaced out, groggy, easily confused, unable to sit up by myself, dizzy…
When I used to nap, it soon became clear to me that my body clock would reset itself, no matter what time of day it was, and it would think we were starting the day again. That’s what happened over the weekend. Extra sleep is not what my body needs. I never wake up feeling better for it. Instead it is decent and complete rest that eases the long list of symptoms for me.
The majority of M.E. sufferers I have met along the way, need to nap to get through each day. It just goes to show how differently each of us are affected.