Chronic illness: my worst day yet

Yesterday, I had my worst day so far since I was diagnosed with Chronic Fatigue Syndrome (CFS).
I wanted to write about it in the hope that it provides some kind of reassurance for somebody; because I was actually quite scared by it.

When a rheumatologist told me back in 2008 that my constant pain/discomfort & fatigue was due to Fibromyalgia and CFS, of course, I was worried. However, from then, I managed it well. I read a lot about both conditions, and I realised that, compared to some people, I wasn’t too bad. I wasn’t really ‘debilitated’ by either, and flares were (luckily), few and far between. When a flare did strike, it lasted a few days and forced me to slow down. I’d need an afternoon nap usually, but it rarely got in the way of life.

Something changed around 18 months ago. I started with a fibro flare that was slightly more painful than usual. A few days in, the fatigue hit me harder than ever before. This time, the flares never really left. Since then, I’ve had pain and fatigue every day. Over the months, it got worse and worse. I’d go to my GP convinced that something was seriously wrong. Each time she tried to reassure me; this is how these conditions are affecting me and maybe I need to learn to accept it and adapt my lifestyle accordingly. GP visits often left me feeling so alone. I felt desperate for help of some sort and looking back now, I realise that my own expectations were creating this distress. My GP did her best. She would listen, try to understand, explain things to me, check bloods, refer me to specialists (pain clinic & cfs team). So she was taking me seriously… But I expected more. I still don’t really know what more I wanted. She was right; I needed to focus on ‘managing’ the way I felt. I needed to see what changes I could make in order to improve my daily living. So I tried to make sure I didn’t arrange too much in 1 day. I tried to recognise when things were deteriorating, to ‘nip it in the bud’. That didn’t always work. And even now I am sure that CFS will strike me whenever it wants to, and it will stick around no matter what I do/don’t do.

This takes me now to where I’m at currently. In the last week of March, my fatigue started to get worse. I’d wake to my alarm in a morning and be so exhausted that I’d have to cancel plans and go back to sleep.
Day by day I spent more and more time in bed. I started to sleep through alarms, phonecalls, messages. My fiance would have to come and wake me if I needed to be up for anything, which worked at first, but not for long. It got to the point where, if Bex couldn’t wake me she would have to cancel my plans (if I had any) and she would wait patiently for me to wake up in my own time. This, for the last few weeks, has been anytime after 1pm.

Yesterday, I was planning on a catch up with a friend who I’ve cancelled on so much lately, because of fatigue. I was determined to be up and out by 9am. I woke up to see Bex; instantly knew I’d missed meeting my friend. I think I spoke to Bex for a few seconds before drifting back to sleep. I ‘woke’ a few times throughout the day. ‘Woke’ meaning I was aware of things going on around me, but I couldn’t open my eyes or even speak at times. Bex had made me a cup of tea, and I desperately wanted it, but was too exhausted to try and move. I fell asleep and my tea was stone cold when I woke up properly.
Each time I ‘woke’ I felt trapped in a body that had zero energy. I would try to speak but my lips wouldn’t move. Each time I tried to open my eyes, they would roll to the back of my head.
I finally did get enough energy to get up… At 3pm. I managed a shopping trip, but by 5.30pm I was back in bed. Physically exhausted again I just had to lie down; I felt like I couldn’t hold myself up.
I tried again to get up later that evening and after 10 minutes I had to go back to bed.

Yesterday was the worst experience I’ve had with CFS and it was horrendous. Anybody out there who has felt in a semi-conscious state?

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