Unfortunately with ME there isn’t one magic pill or treatment to help us get better – less ethical individuals may claim there is. Such is the nature of an illness where individuals with similar symptoms yet unknown causes are grouped together with the term “Chronic Fatigue Syndrome, Post-Viral Fatigue and ME.” And such is the nature of hearing the words “Chronic Fatigue Symptom” to suppose it’s about being tired all the time – a syndrome not an illness or disease. That’s why you’ll hear the term “ME/CFS” a lot – as CFS alone doesn’t seem to give the illness authenticity. Plus if you have the associated brain fog and cognitive effects of ME/CFS – try remembering and pronouncing the words “Myalgic Encephalomyelitis” in a sentence.
It’s frustrating – along with finding it now hard to do VLOOKUPs and simple Excel formulae – seriously “SUM”, “Open Bracket”, “Oh no – what was that cell reference again?!”, “SUM – ummm – I give up!” Why doesn’t my brain work anymore!!! Let’s not even consider IF statements and nesting. Thankfully though my PowerPoint skills seem to be reasonably retained.
So – what has helped for me in managing my ME and trying to get better.
- More Rest
- Lymphatic Massage
- Counselling / CBT – individual sessions to help me start to accept and acknowledge my ME and self compassion, and group sessions with fellow ME people where we’ve all gone through a learning journey
What hasn’t helped:
- Graded Exercise Therapy
What might have helped:
- CoEnzyme Q10
- Vitamin and Mineral Supplements
So what is Rest?
This is the scarey thing with ME/CFS. Rest means rest. That means no reading a book, no watching TV (yep even a guilty pleasure like Love Island or watching Wimbledon doesn’t count as rest), no background music, no planning the weekly shop in your head whilst sitting. It means no spending of physical, cognitive or emotional energy – just nothing.
It’s hard. It doesn’t really fit in with family home life or working or commuting. For me – doing nothing was a huge challenge. It still is – as I feel like I’m wasting my time. Having been juggling home and work life and spending my spare time creating lists and plans for what seemed like important things at the time – this was hard. This didn’t fit in with my core beliefs about my value as a person. Pre-ME/CFS – I knew about Self Care and Me Time – because that’s what people talked about but did I really believe in it and execute upon it? Not really – and if I did – I’d try to plan and make things easier for those looking after the kids – and in effect place more burden on myself.
I still struggle with the difference between Self Compassion and Selfishness.
Now this blog post was actually going to be about Pacing – I was going to talk about Rest and how I used Pacing to help me get over the idea of “Doing Nothing” and and how I tracked it so I could measure it and so change my approach to Rest.
“If you can’t measure it, you can’t manage it“ – isn’t it lovely how management speak and ways of working in the Corporate world creep into how you approach life! Well that’s how we approached projects in Consultancy back in the day …
However – I can feel my symptoms flaring up – sore throat, painful lymph nodes, my temperature is all over the place (mainly feeling cold). And so I’m going to take some of the medicine which I’ve learned through CBT – Self Compassion. I’m off to rest.
However if you aren’t needing some rest and can do some low level activity and watch TV – then I’d recommend Brene Brown’s TED Talk on the power of vulnerability.
I’ll share my geeky spreadsheets and pacing diary another time!