Newly diagnosed with ME? … here’s What I Forgot to Say.
I covered a lot of the main points in my last post of what to expect going forward – however, as I lay in bed on Saturday afternoon, feeling all the ‘feels’ after letting a friend down because I wasn’t well enough to meet – I realised a few points I hadn’t mentioned. So, here goes:
With respect to Self-Doubt (just a quick recap) – once you’ve finished procrastinating about whether you REALLY feel as shit as you think you do, and whether you might feel better if you DID do the ‘thing’ …. and you eventually realise that you probably SHOULDN’T do the ‘thing’ because you wouldn’t be having this conversation with yourself in the first place if you WERE genuinely well enough to do the ‘thing’ … THEN we reach the bits I forgot to mention:
- Cancelling Plans – One of the crappiest things you have to do in the name of not pushing yourself with ME is cancel plans. Often, this will happen at the very last minute because you spent the whole morning dealing with Self-Doubt, and willing yourself to feel better than you do, and kidding yourself that maybe you DO feel better … when in fact, you feel as rough as a badger’s arse. Actually, scrap that. The energy you just spent on all that procrastination has potentially now made you feel as rough as TWO badger’s arse’s. Because, sadly, it’s not just physical activity that uses up energy when you have ME; cognitive, social and emotional exertion also drains our glass faster than Pete Doherty in a pint-downing contest. Cancelling plans can be VERY hard to do – it takes a LOT of emotional energy to let people you care about down – especially if the ‘thing’ is something you and the person you’re cancelling on have been looking forward to. It takes great courage to put your health first and sit with that level of disappointment – so, if you’ve found yourself cancelling plans recently to prioritise your health, then a massive well done to you. Keep up the excellent work👏. Your body will thank you for it by hopefully not getting any worse, and ideally, by getting a little better.
- Guilt – Just when you should be showing yourself grace and kindness for doing the right thing in a shitty situation – instead, you may feel guilty as fuck for letting your friend/family/partner (delete as applicable) down. You might worry in case they don’t understand; what if their day is now wasted because of you? What if they think you’re a rubbish friend? What if they think you’re faking it? What if they stop trying to make plans with you? Okay, so here’s a thought … if they did think any of those things, would you want to be friends with them anyway? Probably not. One of the positives to ME is, it weeds out the crap and shines a massive halo over the genuinely lovely people in your life – the people who DO understand, are always supportive, always there, and always want what’s best for you.
So, once you’ve finished with Self-Doubt, Cancelling Plans, and Guilt – you’d think you might finally get to have that much-needed rest – right? Wrong. First, you’ll need to take a roll of the dice in the:
- ‘Blame Game’ – Such fun! (Not.) You were so careful. You rested. You paced. You did everything right. But you feel like utter crap, so you must have done SOMETHING wrong?! Please don’t waste your time and tears on trying to work out your ‘mistakes.’ Remember from my last post – you DIDN’T do anything wrong. It is NOT your fault. Also – be kind to yourself. ALWAYS. Even if you haven’t been careful … the way you are feeling is still NOT your fault – because it is NOT your fault you have ME.
Of course, there’s always the possibility that it’s someone else’s ‘fault’ that you’re not well enough to do the ‘thing.’ It might be something as simple as the people in your household made too much noise too early in the morning for the last 3 mornings, and now you’re paying the price for their selfishness and inconsideration.
I know from experience how hard it is not to get angry at others for things like this. It’s a lesson I’m still learning, even after 8 years. But the thing is – it’s not their ‘fault’ either. Not if they’re doing their best to work around your needs, but your fight or flight response is turned up so high that you can hear noises only dogs and dolphins are supposed to hear (this is definitely the case with me. My hypervigilance to noise is through the roof when I’m trying to sleep). Being kind to the people close to you – as well as yourself – is really important. Because, ME is a massive knobhead who loves nothing more than watching you play the blame game – so don’t play it. Remember, you need all the support you can get from the people closest to you. So, take a deep breath and try to remember that – just like you – they’re also trying their best.
Okay, SO … once you’ve worked through all of these stages, THEN you can finally breathe a massive sigh of relief. Because, deep down you KNOW you made the right choice by staying home. And you KNOW it genuinely isn’t anyone’s fault. And you KNOW the right people in your life will understand. And, as you close the door on the world and snuggle down into that really cosy duvet that feels like a massive hug around your desperately broken body … you can FINALLY do the ONE thing your poorly body needed all along:
- REST – And oh man, after the fierceness of that emotional hurricane … it feels soooooo good to rest.
Always remember: when it comes to cancelling a ‘thing’ – although you might not be well enough – you are ALWAYS enough. Be kind to yourself. Always. ❤
(Image: me resting after cancelling plans I’d been really looking forward to with a friend on Saturday. Or at least, resting AFTER I’d worked my way through all of the aforementioned stages first, of course. 😉)
