Five Lessons I've Learnt About ME/CFS

28 July 2014

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 this 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 rollercoaster, 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 hopeEvery 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.

#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?

Meg

39 comments:

  1. Yes Meg! I think I just needed to read that today ... xx

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    1. Yay, so happy to hear that! I needed to write it, was getting a little bit blue over here - now about to have a slice of cake and a Netflix marathon so that should help, also ;) glad you enjoyed it Sally, hope this week is kind to you! Lots of love x

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  2. Goodness this got me a bit emotional. I don't think it's possible to understand fully how you feel everyday but the strength and determination you have is so inspiring. It makes me feel like I should do more !
    Lauren x
    Britton Loves | Fashion Lifestyle + Photography - www.brittonloves.blogspot.co.uk

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    1. Aww! That's so kind of you to say, thanks Lauren <3 I have a lot more determination to do more when I'm better also, it gives your drive a bit of a kick up the bum when you suddenly can't do the things you used to. Hope you have a great week :) x

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  3. Words can't say how much I love this Meg, staying positive and finding ways to cope is essential, and these tips I'm sure will help many people who aren't finding it quite so easy.
    Lots of love!

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    1. Thanks Hay <3 you're my positivity inspiration also, always giving me a boost when I need it! Agreed, finding ways to cope is the only way through it - especially when we take steps backwards and notice a decline in our health instead of progress. Lots of love right back atcha! x

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  4. Great post :) Just the boost I needed on a bad bed day!

    Alice x
    slowlymendingme.blogspot.co.uk

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    1. So happy to hear that you enjoyed it, Alice - glad it helped, also :) hope that tomorrow is a better day for you, fingers crossed we'll be able to escape our beds! x

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  5. This is such a brilliant post- I love it! Definitely reminded me to stay positive, thank-you:-) x

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    1. Thank you, Lauren! Glad you liked it, hope you have a lovely positive week :) x

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  6. Such a lovely post Meg, thank you spoonie sister xx

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    1. You're welcome sis - here's to a better week ahead! <3 x

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  7. You cope so well Princess. Often we put so much pressure on ourselves to deal with it and be brave. But it's good to remind ourselves that we are only human and we have a lot to deal with. We thought we were on one path that we were working so hard for then suddenly we can't even get out of bed and no one can give us a proper reason why.
    I think maybe with fault in our stars people may get more understanding of all the things we deal with and maybe give us some more credit.
    I know some amazing people. You my dear are one of them. And you have achieved so much. As Queen Bey would say you're a girl on top. And if somedays you're not then that's petfectly normal and you know where we all are.
    P.s my Mum just read this post. She said you're amazing too.
    Love ya my little Princess, lots of tlc
    Xx

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    1. This is such a lovely and thoughtful message, Sian <3 thanks so much for taking the time to write it. I agree - it's a lot for anyone to deal with and like you say, we're only human! People see vulnerability as a bad thing but I don't think it is at all - I've had this 'thing' since before I became unwell with ME where I let myself be as upset as I need to, but then I pick myself up and carry on. It doesn't matter if you need to have a good old cry or feel angry at the world for a while, but then I think it's important to do a Jay-Z and brush your shoulders off - being optimistic and happy 24/7 won't make our problems go away, but neither will wallowing in them. TFIOS will definitely open some eyes! Being chronically ill isn't glamorous in the slightest. You're amazing too, I'm so proud of you and all of our spoonie family <3 lots of love to you and Mummy Wootton! :) Love ya too beautiful, you're one of the most special and good things that has come from getting this illness! x

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  8. It is so inspiring that you took something so awful and made it into something beautiful. I don't know what you are going through, but I know your positive attitude will help those who are in the same situation.
    I nominated you for the Liebster blog award! Check it out Here If you'd like.
    xo
    MissAnnaRebecka

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    1. Thank you Anna, that's so sweet of you to say! I hope so :) aww, thank you - I'll definitely take a look, you're a gem x

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  9. Thanks for sharing Meg.
    It took me a long time to get to this point as well for me it's been five years and I went through the stages of worthlessness and self pitty but I had to come to that point where I had to say enough is enough life is better than this and I deserve to be happy.
    It has only been since the end of February that I have picked up my life and started to do great things with my time.
    I found the blogging world and I have just found a possible business opportunity that I will be able to do at home and in my own time at my own speed.
    It took me ages to be able to deal with the pain and how to be able to live life and actually be able to leave the house happily.
    I love that I have found you Meg!
    Thank you for sharing your story.
    xo Holly xo

    HollyDolly. 

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    1. You're so welcome, Holly! The way I see it it's kind of like the 80/20 diet where you can indulge 20% of the time if you eat clean 80% of the time - we're allowed to have those moments of sadness as we're only human, but with this illness it can be so easy to slip into a negative frame of mind and it's really important to deal with your emotions and learn how to cope. What's the alternative? I've found blogging so therapeutic also, it has really helped me and I'm so happy that it has helped you too :) I've got a job through blogging, it's amazing isn't it?! Working from home will be so ideal for us. Good luck! I am too - it's lovely to meet such great people. Lots of love! x

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  10. Hey Meg!
    Great post and great blog. Just finished doing a Youtube about the same stuff. The Surviving ME/CFS Show - Episode 3 .. Keep up the positivity matey. We can't control much about our illness, but we can choose to have a BRILLIANT attitude. Jules.

    http://survivingcfs.blogspot.com.au/

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    1. Hi, Jules :) thanks so much! Oh that's brilliant, I recently made a YouTube video (search 'Flink Life' and it's called 'Let's Talk About M.E') - we didn't think any other sufferers did it! I'll be sure to check out your channel, can't wait to get another positivity boost from a fellow sufferer. I absolutely agree! If I can't have control over my body and what it's doing then I'm sure as heck going to have control over my mind, emotions and how I react to a bad situation. Hope you have a good week! x

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  11. What a lovely post! I can't imagine what it's like living with M.E, only that it must be really difficult, and I find your attitude really admirable and inspiring. Thank you for sharing :)

    xx Mimmi, Muted Mornings

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    1. Thank you Mimmi, that's so kind of you to say! I really appreciate you taking the time to leave such a lovely comment :) it makes my day to read things like this as it means awareness is spreading in the non-ME sufferer community (if that makes sense!) x

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  12. What a brilliant post - I have the exact outlook as you, but I couldn't have written it so well. I'm 15 years in, but still smiling. I hope you get there before too long x

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    1. Thank you, Kaz :) wow, fifteen years and still smiling - I should be taking pointers from you! Great to hear that you have such an optimistic outlook, I always think 'what's the alternative?' To be miserable, down in the dumps, depressed and feeling like my life was worth nothing because I have this illness? No, thank you! It's very hard to live with but I'd much rather live it being happy with what I do have :) x

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  13. Fantastic blog Meg!! I totally get where you're coming from! I have had ME for 2yrs now and have gone from working full time as a registered nurse, owning my own home and going on yearly holidays to exciting places to being on the sickness benefit, living with my mum and basically having a very small and limited life! But I try everyday to see the good and be grateful for what I have, like a wonderful kind supportive family and wonderful friends! I have re-prioritized my life and now realise what was important to me prior to getting ME isn't really what life is about! So thank you for inspiring me :)

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    1. Thanks so much! It makes me so sad to hear of your story and how much you have lost, but so proud that you have the attitude that you do - it takes a very special person to be able to smile in the face of such adversity and loss. Thank YOU for inspiring me - what you've said about realising what's important really strikes a chord with me. What matters in life is so much clearer now that I've lost so many things and I have a much better sense of gratitude now. Sending lots of love your way, thanks again for your comment and lovely words! x

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  14. Wonderful post Meg! Very inspiring and beautifully written!

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    1. Thank you so much, it means a lot :) x

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  15. One thing ME taught me was not to rely on doctors. I don't know what you've tried to help but I've recovered a lot with probiotics, vitamin d and N-acteyl-cysteine and a gluten free diet. Found out about the methylation protocol on phoenix rising and an adapted version suits me. Hope you find something that increases the size of the spoon.

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    1. Thank you! I've tried most of those but I'll try the ones I've haven't :)

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  16. I love this post! It's so positive and inspiring! Life with ME/CFS is so hard and it can be extremely hard to keep positive and see a ME/CFS free future. Keeping positive is the best way to be, its good for you health! :)

    Lennae xxx
    www.lennae87.wordpress.com

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    1. Thanks so much, Lennae :) I find you very inspiring, also - was reading your post the other day about how exercise has helped you and I loved it. I agree, your body responds well to positivity. Not saying that it can magically cure you, but it can only help your overall wellbeing, right? :) x

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  17. What a wonderful & positive post, just the one I needed on a rainy day. merci beaucoup!

    Christine
    www.cfsfrei.blogspot.ch

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    1. Glad it brought some sunshine through the rain, Christine :) x

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  18. Hi Meg! After reading your blog I am impressed how positive you try to keep yourself through the daily struggle with ME. I was 14 years old when I started with the illness after contracting Glandular Fever. Unfortunately for me I am almost 38 and still suffer from the debilitating condition. Every day is an up hill battle, not only due to my health but trying to raise two daughters he best way I can. I hope one day they will find a cure or even effective treatment' but until then I am thankful to be alive!,

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