Monday, 20 May 2019

The Chronic Illness Diaries: Fatigue, Fatigue, Fatigue

legs in black pyjamas with white butterflies on pink sheet with books, glasses and phone

Sleeping is a funny thing; sometimes I don't do it at all, other times I do it too much and sometimes it's a mixture of both, thus resulting in a very zombie-like Sarah.

Living with CFS/ME is difficult, it's not just about being tired. I could sleep for fifteen years and still be tired; my sleep isn't restful, I don't wake up feeling refreshed and ready to tackle the day, I usually need to nap an hour after I've woken up. Often I don't sleep at night, often I'm wide awake, overtired, exhausted to the point of pain and worn down. Sleep is a struggle. I want to do it, I want to wake up rejuvenated but it's unlikely. And I'm tired during the day. It can hit me at any time, no matter what I'm doing or if I slept okay the night before. It crashes down on me like a ton of bricks and my eyes become so heavy, there's nothing I can do but sleep.

Last week was a struggle. To be honest, my battle with fatigue for the last few months has been torturous. But last week set me back.

It made me feel that guilt; the guilt when you feel like you've wasted a day. But I had nothing planned, I didn't need to be anywhere or do anything so I don't know why I've been giving myself such a hard time.

Thursday night I forgot to take my night medication. I have been taking medication for twenty years and I forgot. My alarm went off as usual, I was busy reading so turned it off and just didn't take my pills. I was lying in bed wide awake for what seemed like a lifetime and then at 2:30am, I looked at my meds organiser and Thursday night was full.

I instantly felt like bashing my head against a wall. How had I forgotten them? HOW?

I took them straight away but knew I'd not be sleeping. I tried. I really did. I even counted sheep but nothing worked. 7am rocked up and I was still lying there listening to the birds. Eventually I was off to the land of nod but not for long and not a restful sleep because the men that were installing our hall floor arrived.

My dreams have been erratic lately; I sleep but my dreams are so intense that I wake up shattered and can explain in detail the weird events that went on when my eyes were closed. I don't rest or sleep like I want to, I can't stop my mind going into overdrive. I just want to sleep and not dream.

Anyway, I don't know how but I didn't nap at all on Friday. I stayed in bed the whole day watching New Amsterdam on Amazon Prime and cuddling Teddy. I didn't fall asleep until about 3am that night and again, the dreams were wild. I can't explain just how intense and how vivid they are. I didn't wake up until 2:30pm on Saturday and as soon as I did, I felt awful.

My brother FaceTimed me and he'd also only just woken up. I asked him if he felt guilty for sleeping in late and he laughed, 'no'. So, why did I? Why did I give myself such a hard time? Why was I waging war with myself? I wrote about feeling guilty here and like I said, it's a process and one I'm determined to overcome. I need to be more like my brother. I need to be okay with resting. I need to recognise that it's what my body needs and be okay with it.

I was awake for two hours before I was hit in the face with fatigue. I desperately tried to keep my eyes open and had no intention of sleeping as I wanted to fix my sleeping pattern but I physically couldn't. I couldn't concentrate, my eyes were heavy and I felt like I hadn't slept in months. I ended up falling asleep on the sofa and then dragging myself back to bed. I slept, not peacefully until 8:30pm and could have gone for longer. I fell asleep later that night at around 2am and woke up Sunday at 1:30pm.

I had a really weird dream about Robert Sheehan and us chasing some sort of monster; it was equal parts terrifying and exciting but meant that I didn't rest properly...again. Despite my intensely bizarre dream, I felt okay, I didn't feel as knackered as I had the last few days and thought I'd got over this horrible fatigue flare. I showered and yawned my way through lunch but 5pm arrived and as I was taking my late afternoon medication, I realised that I'd taken my nighttime medication in the morning.

I was furious with myself. I still am furious with myself.

The first thing I do of a morning is take my medication and this is the third time this month that I have mixed up doses. My boyfriend suggested moving my medication out of the bedroom so I have to be awake when I take it so I've done that. But having my night medication in the afternoon screwed me over as they help me sleep. So by 5:30pm, I was asleep again. As soon as my head hit the pillow, I was out like a light. This time for two hours.

I'm pretty sure I nap more now as an adult than I did as a baby. But I don't sleep like a baby, I wish I did.

I need to remember to take my meds. I need to check I'm taking the right meds. And I need to sleep. 


  1. I really do hope you get better sleep soon. I'm having such detailed vivid dreams too, they're so exhausting. They'd be funy if they didn't knacker us out so much. I've started taking valerian (which is vile) so we'll see how that goes xx

  2. Your story of fatigue sounds so much like my own. I'm battling to have someone take me seriously about the amount of pain I'm in on a daily basis and how utterly knackered I am. It's like no sleep rests me, pain is unbearable and I hit a wall daily where my body and brain says "that's enough" and it's normally between half an hour and 2 hours after I wake up.


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