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5 Lessons I’ve Learnt About ME/CFS

Reprinted with the kind permission of Meg and Meg Says [1].

This time last month marked the sixth year of being an ME sufferer and one year to the day of my official diagnosis. I had the date marked in my calendar, but how do you go about such an 'anniversary' – do you let the 24 hours pass without recognition? It's not like people get together to raise a glass to chronic illness, toasting to poor health.

I wanted to make a positive occasion out of a negative situation and so I wrote a post about how I was diagnosed and a handful of the most notable things I'd come to realise after over half a decade of illness. As I've been having a bit of a rough ride with my ME lately and feeling like I've taken steps backwards after a couple of better months, I've decided to revisit those little pearls of wisdom and I'm no longer wallowing. Enjoy!

1. You have to create your own light at the end of the tunnel.

Living with ME is a roller coaster, and not in a fun Ronan Keating you just gotta ride it way – in an unfair, unkind, undeserved, frustrating, cruel way. I remember my doctor saying to me on the day I was diagnosed, "I'll help you in any way that I can, but there isn't anything more I can do for you". I'd read endless amounts of information on ME and knew what she meant – she could prescribe medication to ease pain or offer advice on how to improve various symptoms, but ME is incurable and untreatable. I wanted to hear, "two years maximum, and you'll be in the clear," but there's no time scale and no guarantee that I'll ever get better, so I turn to positive thinking and see my recovery as a fact, an eventuality – one day, I will be better. Maybe not this year or the next, but one day.

2. ME will make you feel like giving up. One word: don't.

Having ME will push you, physically and mentally, to your absolute limit. There are no two ways about it – it's a devastating illness that can turn your world upside down and suck the life out of you. You can be as good as gold, following every 'chronic illness law' in the book, and ME still won't thank or reward you for it – and if it does, it has the habit of pulling the rug out from underneath you just when you think you're getting somewhere. It's hard and disappointing but you can't give up hope. Every day you might wonder how much more you can takebut your hope is the only thing stronger than your fear. And if you can't be your own cheerleader, I'll be yours for you – personalised chants available on request.*

*gimme a J, gimme an O, gimme a K, gimme an E…

3. Spoonies are some of the best people on the planet.

Fact. Aside from the priceless comfort of my family, friends and other half, I've received an unbelievable amount of support from people I've never met and who I now consider friends. Perhaps it's because we're all in the same boat, but there's something comforting about speaking to someone who knows exactly what you're going through, and I just can't say enough good things about the wonderful individuals I've met through having ME. I love 'em.
P.S. If you're unsure what a spoonie is, read Christine Miserandino's spoon theory here [2].

4. Adjust to your limitations and don't look back.

My ME became severe two months into university, and I felt bitter about being forced to give up something I loved. Being bedbound, my days quickly felt listless and pointless until I realised that I needed to actively give them a purpose. If I couldn't do my degree, what could I do instead? Upload a photo every day to my Instagram account? Yep, done. I couldn't attend lectures and write essays, but what could I do instead? Start writing blog posts? Yep, slowly but surely and sentence by sentence. My happiness and success grew as soon as I stopped being sad about what I couldn't do anymore, adjusted to my new circumstances and focused on what I could do. Looking forward is the way… well, forward.

5. Recognise progress, find joy in the little things and focus on the good.

It would be easy to focus on the negatives, and it would be easy to grumble. Being in pain 24 hours a day 7 days a week and never feeling like you have the energy to hold your own head up gives you a lot to be unhappy about. It's really, really hard and I don't think I'll stop having days where I lay in bed and think, "I can't stand this." It frightens me far too much to think that I might go through the rest of my life feeling this unwell every day, so I consciously choose to focus on the good – and the best way to do this is to recognise the progress I've made and to be proud of how far I've come. Some days I can't open my eyes, yes, but every day used to be like that. I've got a whole lot more to be grateful about today compared to a year ago. I can walk! I can talk! I can feed myself! I used to take those things for granted, but never again will I walk ten paces and not be smiling. As Pam Beesly put it best – "there's a lot of beauty in ordinary things. Isn't that kinda the point?"

Which life lessons have you learnt through difficult times or challenges you've faced?

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About the Author: Meg is a creative writer and ME/CFS patient who writes the blog Meg Says [3], which is about “anything a 21-year-old has to say about living life with a chronic illness, a love for lipsticks and everything else in between.”