Recently I started writing about my reflections over the last year. Since falling ill, many things have happened. Starting my blog. Getting my first powerchair. And it’s really got me thinking: if I could give advice to my newly diagnosed self what would it be? Things are so massively different since then, some in really good ways, it’s not all depressing, honestly. But in other ways it’s been a hugely reflective time.
Being diagnosed with ME CFS was a strange time. Months and months of infections had preceded it, a gradual reduction in mobility as part of this. Naively I had thought nothing would change, that a diagnosis wouldn’t change my behaviour.
But yet it had to. My mobility had gradually reduced BECAUSE nothing had changed. I wasn’t looking after myself. My body was screaming out for me to stop, but I didn’t listen.
I was fighting an internal ableism that told me to just fight through it. Keep moving, keep powering through, surely things would get better like that? How wrong I was.
Treatment for ME CFS is not available, or certainly there isn’t any universal treatment proven to make a difference. But one thing that pretty much all long-term sufferers (and I use the word sufferer with haste as it’s difficult to know which noun is appropriate) agree on is that rest when your body tells you to, is essential. Pushing oneself beyond reasonable limits is out of the question. “Just push yourself, you’ll never get better otherwise” is an inherently dangerous phrase to be thrown around. But having been diagnosed I didn’t know any different. I did try “pushing myself”. But as warned by pretty much every ME CFS patient I met online, this made things worse.
That internal ableism I was fighting in myself told me that “giving in” to the condition equated to “giving up”. I thought that if I could try and effectively ignore the condition and what it was telling me, or as others told me over and over again “don’t let it define you”, things would get better. They didn’t. It didn’t work.
I’ve since learnt that “giving in” actually means accepting the condition, understanding it for what it truly is. I’ve realised that “giving in” in my eyes is the ultimate in strength, the ultimate in doing what’s best for oneself.
So, to give advice to my recently diagnosed self: look after yourself Soph. Be patient, be kind, give yourself permission to rest. Don’t try and prove something to others that you know isn’t right for you. Time will let things settle and until that happens, be in the moment. Accept that this is it for now.
I decided to open this up to the ME CFS community. What would they say to themselves if they could go back in time to speak to their recently diagnosed selves?
Here’s what they said:
Louise Cyphere @GraemebrettWil1
Make sure you rest, rest, and rest again.
Don’t feel selfish by putting yourself first. Your health matters, and in order for you to be at your best possible level of health, you have to do what’s best for you. Resting and not unnecessarily running round after others does not make you a terrible person.
Marilyn Gavranovic @MarilynGavrano5
Avoid self-pushing or self-blaming…obey your body. ME is real!
Rest, rest and more rest. Convalescence was quite acceptable in the Victorian age and maybe we have something to learn from this.
Susan Devlin @suzieq0976
Accept that your body isn’t able to do what it did before. Accept all offers of help and rest as you will only make yourself worse.
Pace yourself and rest too. Pacing is hard to do to begin with as you are not used to doing it. But after a while you will get used to it and this will be the new “normal”. Listen to your body.
It’s ok to not feel ok. It’s time to start putting yourself first for a change, learn your limits and pace yourself. If the house is a mess and you’re drained, f*** it! Leave the mess and take a nap or binge watch your fave series, when you feel a bit better then you can clean.
Vicky Noble @WickiWise
Rest, stop trying to run around for everyone else like usual. Life isn’t usual anymore. And the simplest way to explain ME when people ask – I have a condition which makes my body unable to produce any energy. I am not tired, I can’t produce energy.
…Don’t waste money on cures. Trust that you know what is best for yourself. Take any drug that helps. Get your money/benefits sorted – seek CAB help. Forget CFS/ME services. They are crap.
Do any of these statements resonate with you? What would you say to your recently diagnosed self if you could?
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