Newly diagnosed with ME?
Or maybe not diagnosed yet, but this shit has been going on for so long that you ended up doing your own research and figuring out for yourself that you probably have ME?
Wish you had a clue of what to expect going forward?
I was in that boat too once. It’s crap and I’d really like to help. So, here goes:
First of all, I want to say how sorry I am that you’re going through this hell hole. And in case you didn’t already know: it isn’t your fault. You didn’t do anything wrong, and you didn’t lead such a busy/stressful life that you somehow brought this on yourself by not resting enough. You couldn’t and shouldn’t have done anything differently; you simply drew the shittiest of short straws.
I drew the same shitty short straw over 8 years ago – and here’s what I wish I’d known from the start:
- Pacing and rest – you need to do it before, during (if possible), and after doing a ‘thing.’ This applies no matter what the ‘thing’ is: housework, shower, socialising … anything. Pacing and resting is literally the only way to manage your condition. Sometimes, you will pace well. Sometimes, you will pace terribly. Just remember: you are doing your best in a really crappy situation and you should ALWAYS cut yourself some slack.
- PEM – this stands for Post-Exertional Malaise. It refers to an increase in symptoms and may feel like you’ve run a marathon with the hangover from hell anywhere from an hour to 72hrs after doing an activity. And it’s almost always coming for you. Your (rather difficult) job now is to make peace with this, and decide whether doing a particular ‘thing’ is really worth the payback.
- Blame – is very much a ‘thing’ with ME. Don’t allow others, and especially don’t allow yourself, to berate you for doing a ‘thing’ and then suffering PEM as a result. It is NOT your fault. Did something and didn’t know you would feel quite THIS shit afterwards? Not your fault. Did a ‘thing’ because it really mattered to you and now you feel like utter crap and can’t muster the strength to even brush your teeth? Also not your fault. You may find yourself repeatedly making so-called ‘mistakes’ in an attempt to fulfil a desperate need to do ‘normal’ activities in your otherwise now ‘abnormal’ life. It’s okay … we all do it. Because, trying to live your life is NOT a mistake and you are NOT at fault if you suffer PEM afterwards.
- DON’T PUSH YOURSELF. You need to understand that Exercise Is No Longer Your Friend. I’ve always wondered, ‘if someone had told me this in the early days, would it have stopped me from ending up housebound and in a wheelchair with Severe ME for 3 years?’ I will never know the answer to this. Maybe it would, and maybe it wouldn’t. Regardless, it would have been nice to at least have been given the heads up before I kept pushing myself. So, consider this your heads up my lovelies.
- Employment/study – you may have to go part time or give up work/study altogether. If you haven’t done so already – brace yourself (and your partner/family). I don’t say this lightly or to scare you. This is just a harsh reality for many ME sufferers. Hopefully this won’t happen to you, but it’s always best to have a plan in place, just in case it does.
- Benefits – you may need to apply for PIP. Brace yourself again, and find someone to help you with the form – it’s a LONG one. Also, if the DWP tell you that you didn’t score high enough to qualify, and their report reads like absolute bullshit-wank written by some underqualified numpty who knows nothing about you or your suffering, then appeal, appeal, APPEAL. Sadly, these ill-informed reports are commonplace and it is a fact that many ME sufferers have to appeal. On the plus side – the DWP’s decision is often overturned and you get the support (and backdated payments) that is rightfully yours eventually.
- Expectations – lower or completely eliminate expectations of yourself. You are enough, just as you are. Even if you are currently festering in bed and haven’t washed for 9 days – you are enough. Don’t pressure yourself, and whenever you do manage to do a ‘thing,’ congratulate yourself. Even if it’s simply brushing your hair. If it’s something you can’t always do, then it’s special enough to warrant a pat on the back.
- Food – eat ‘easy’ food that doesn’t take too much energy to cut/chew (eg., soup, mashed potato, chilli). Or get someone to do the chopping in advance so you only have to do the chewing. There is zero shame in this, and people who care about you will be happy to help.
- Fitbits/watches that monitor heart rate – You may feel tempted to buy one so you have concrete proof of any spikes and dips, to prove to yourself – and your GP – that you are not imagining it. Be careful. Although some people find that monitoring their HR helps them feel more in control through identifying triggers to help manage their condition – many others find themselves obsessing over their HR, which makes them feel anxious and anything BUT in control. Sometimes, it’s better to pay attention to how you are ACTUALLY feeling, rather than how your watch says you must be feeling.
- Self-doubt – if you spend a lot of time wondering if you REALLY feel as shit as you think you do, and wonder if maybe you SHOULD do the ‘thing,’ and tell yourself that maybe you would feel better if you DID do the ‘thing,’ – then a) you are completely normal and most of us with ME do this, and b) you probably shouldn’t do the thing. I’ve come to realise that on days when I’m feeling pretty good, I NEVER question if I’m well enough to do a ‘thing;’ I just get the fuck on and do it. So, if I have to question if I’m well enough – then chances are – I’m probably not.
- DON’T PUSH IT – I know I’ve said this already, but it’s worth repeating. You HAVE to listen to your body – rest when you need to rest. Remember, if you do a ‘thing’ to please someone else … it won’t be them stuck in bed for the next however many days, weeks or months; they’ll be out having fun. So, choose your ‘things’ wisely.
- It’s okay to grieve. Sure, no-one has physically died – but you HAVE lost someone: yourself. And in some ways, that can be harder than losing a loved one. Because, after losing a loved one, you inevitably get used to them not being around anymore – albeit it hurts and you miss them. But when you lose yourself – what are you supposed to do with that? When you look in the mirror and see the image of your old self staring back at you, like a fucking ghost that won’t quit – how do you make peace with that? Well, my honest answer is this: yes, it sucks, it’s unfair, it’s cruel, it’s lonely and scary as hell, and yes, it is a LOT to handle … BUT … you WILL get through this. I promise. One minute, hour, and day at a time. Just be kind to yourself – always. And be patient. Eventually, that ghost starts looking like the amazing person you will become … not the person you lost.
- Acceptance – it’s a long and bumpy road to get there … and that’s okay. Everything gets better after acceptance, so it’s worth the wait. You just need to be kind to yourself in the interim and trust that you WILL be okay. Even though you’re clearly not okay … one day you will become okay with not being okay. Okay?
Having ME isn’t all bad. I mean sure, it robbed me of the person I was, my career, hobbies, social life, and future dreams (not a great sales pitch, I know. But stay with me 🤣). Sometimes, it takes something as life-shattering as ME to help us grow in other ways. ME helped to cut out the noise in my life. It made me slow down. It made me appreciate the little things. It taught me to listen to my body – and actually HEAR what it’s trying to tell me. It taught me compassion, gratitude and self-love. (Side note: the gratitude gets kinda ridiculous if/when you start improving. I cried once when my ME was Severe because I wanted an egg mayo sandwich and didn’t have the strength to mash an egg. So now, I always feel extra clever and grateful whenever I mash an egg.
Improvements ARE possible. I know this because I’m one of the lucky ones to improve from Severe all the way up to Mild ME … albeit it took quite a few years to get here. And although things might seem bad now – just remember – it’s a fluctuating condition and won’t necessarily always be this bad. Don’t lose hope, but at the same time, keep it realistic. And just know this: you are enough, and you are doing great. Be kind to yourself – always.
And my final piece of advice is … drink the good wine you’ve been saving for a special occasion. Unless of course, you can no longer tolerate alcohol (VERY common for people with ME). Instead, drink the fancy juice, the posh tea, the expensive hot chocolate. Whatever floats your boat. Because you are special …
… YOU are the occasion. ❤
