Napping. It’s something I never imagined doing before I developed M.E. The thought of taking a day nap was ridiculous to me, why sleep when I could be doing so many other, fun things? Now it’s an important part of my day, it’s a necessity if I want to remain active and get things done.

Among health professionals and doctors it’s a subject that gets a lot of negativity. When my M.E developed after Glandular Fever; I was told to rest as much as possible, give my body time to recover. I was advised to sleep when I needed it and not push through the fatigue. After about 6 months this advice changed; I was told that napping would knock my body clock off, that humans had evolved to sleep at night and be awake in the day for a reason. I was told to push through the fatigue, ignore the urge to sleep or rest, distract myself with activity. It was like the doctors had decided six months of constant fatigue was enough and that suddenly it was a mental issue rather than a physical one. Every time I returned to a doctor I was told my body would reset itself, to stick with avoiding sleep in the day; it was the only way to recover, I’d be back to normal in a few months. It’s been 7 years. For half of that I struggled against overwhelming fatigue and pushed myself to exhaustion; trying to avoid any sleep or rest during the day. When I was overcome and fell asleep, I felt ashamed, I felt lazy.

One of the major factors of M.E is that sleep is unrefreshing and not restorative. A normal, healthy person sleeps and their body goes to work recovering from the days activities. Their energy levels get refilled and they wake up ready for another day. A person with M.E wakes up with the same level of tiredness as when they went to bed. I don’t remember what it’s like to wake up refreshed; I wake up every morning and I’m already exhausted. The ironic thing is; no matter how unrefreshing sleep is, my body still demands more and more. Because I have constant fatigue, my body feels the need to sleep constantly; even if it doesn’t erase the fatigue or refill my energy levels. I could sleep 12 hours straight, wake up for an hour, then sleep for another 12. The only way I’ve managed to avoid sleeping my whole day away is by taking a short sleep in the afternoon. It’s something I’ve been judged for, something I’ve been criticised for. But I’ve tried fighting through it, I’ve tried distracting myself and using every ounce of willpower to stay awake and it always ends up with me becoming bedbound for an extended period of time because my body just crashes and becomes unwell.

I usually take a 2 hour nap in the afternoon, sometimes I don’t actually fall asleep, I just lie down in the quiet and close my eyes. That two hour rest is what gives my body the energy it needs to get through the rest of the day. If I can’t take a nap in the afternoon; if I’m out or busy then the effects become noticeable quickly. I become slower and clumsier, I end up dropping things or having accidents because my fatigue clouds my head. I become very short and snappy with people, I’m irritable because the energy just isn’t there and it’s a horrible feeling, running on empty. I become very forgetful, and I start to lose conversation, I don’t hear people talking to me and I can’t hold a conversation because the brain fog is so bad that I forget words and get things confused. I can’t eat and I forget to drink because the fatigue is so overwhelming by this point that all I can do is sit and stare vacantly at nothing. I become a zombie and it’s the worst feeling I’ve ever experienced. So I take a couple of hours to rest because the alternative is being a zombie. Some days are good days and I can get through them without that rest, some days I might only need an hour of rest or half an hour. On bad days I might go to sleep for 3 hours and still not be able to do any more activities or jobs for the day.

The one thing I’ve learned is; people will have their opinions on this subject and they can be really hurtful. But they are not the one experiencing the illness. Someone else can not feel what I feel. It’s easy for people without chronic illness to make judgements and give advice, whether with good intentions or not; but if they have no experience with a chronic illness then they have no idea how much it takes out of the body. They have no idea how depressing it is to wake up everyday feeling exhausted, and having no energy, the physical toll it takes on the body and on the mind. They don’t understand the disappointment and shame I feel whenever I have to admit defeat and go back to bed. It has a huge impact on my mental health, I still feel guilty and lazy when I have to go to sleep, I feel like a failure. I watch people go out to work and I feel useless and lazy because I can’t do that. But none of that changes what I have to do to get the best out of my life. When someone has the flu or another viral illness, they’re told to rest. It’s not something they are made to feel guilty about or judged for because it’s what the body needs to recover. So why is a chronic illness any different? Because it has no end date, because it isn’t temporary? A chronic illness is chronic because it doesn’t get better, there is no cure. So I continue to rest and take my naps when my body needs them. That is one of the ways I manage my chronic illness, I shouldn’t feel ashamed or be judged for that.