“You’ve been doing too much.”
Now, is it just me – or does anyone else with ME fucking hate it when someone says this to them?
Honestly, nothing makes me want to punch my husband in the face more than when he utters those words. Well, those and, “you’re grumpy today”, when, actually – I was having a really lovely morning. I wasn’t grumpy, but I am now. Thank you very much, Pete!
Don’t get me wrong, I love Pete to bits (lots of bits when he’s pissing me off). But sometimes it’s easy to see why I’m not his first wife. And it’s okay. I knew when I married him that he would need a bit of training to ensure I at least get to be his last wife.
… As in, last current wife. Not last as in, I put him off women for life, and now he lives in the desert, where he will die a bachelor with heat stroke – whilst getting pissed on by a camel.
But anyways, I digress.
Blame or worry?
There’s just something about being told I’ve been doing too much that really gets my back up. I feel like it’s some sort of attack on my capabilities to know my own body and recognise the signs when I’m struggling and get the rest that I need.
In a nutshell, I feel like I’m being BLAMED for the fact that I’m crashing or having a flare up of my ME.
He will say he’s not blaming me, he’s just worried about me. And the thing is – he’s telling the truth. Well … in part. Whilst he is worried about me, I believe he’s also worried about himself, and what an ME relapse would mean for us and our family. Which is understandable.
I mean, I was there. When I was housebound for three years. When I cried trying to make an egg mayo sandwich because I didn’t have the strength to mash a fucking egg. When I stayed home in bed while him and the kids lived their lives without me. When I was too weak to even speak. When my whole life and everything I’d worked hard for came crashing down around me. I was there; it was me.
He says he was there too … and he was. When he made my lunch and put it on our bed in a cooler bag every morning before he left for work, because I was bedridden and wouldn’t eat otherwise. When he used to wash my hair in the bath because I wasn’t well enough to do it myself. When he did all the laundry, cooking, and all of O’s night feeds because I couldn’t. He was definitely there too.
Neither of us would cope if I were to relapse.
Compassion fatigue
He says that he’s worried about me. But his worry used to come with a dose of compassion. That compassion left the building somewhere in the last 6 years after O was born. I know he’s got compassion fatigue. And I get it; I’ve been sick a very long time. He’s tired. We both are.
I guess what might help is, instead of telling me I’ve done too much … try asking, “do you think you might have done too much?” Because, the only person who truly knows the answer to this – is me. I’m the only one living in this body, therefore I am the only one who knows whether I’ve been pushing myself or not. And yes, sometimes I do push myself. But not repeatedly, not regularly, and only after careful consideration about what my body can safely manage.
And remember, I don’t have to push myself to end up in a flare. Sometimes a flare-up will just happen, regardless. Sometimes I can do a ‘thing’ and be totally fine afterwards. Another time I can do the exact same ‘thing’ and not be fine afterwards. There is no consistency or reliability. So yeah … sometimes I have done too much … and sometimes I haven’t. And sometimes – I simply don’t have a fucking clue.
There was no particular ‘thing’ that triggered my recent flare-up. I have been resting when I need to; it’s not my fault if I take longer to get better than I usually do.
Round in circles
He says I should rest and do nothing. But the thing is, if I literally do nothing and leave it all to him – then he gets overtired and grumpy because he’s got too much on his plate. Which makes me feel guilty and crap. And feeling guilty and crap uses precious energy – which does not help matters in the ME department. I may as well use that energy doing laundry and emptying the dishwasher than using it lying in bed feeling like a massive burden.
… Except when I do do that, it reinforces his decision that I am doing too much. Which then makes me feel like I am being blamed for my condition. And round in circles we go.
Marriage and ME
It takes a lot of tenacity to make a marriage work … especially with ME always hanging around like a massive twat-shaped third wheel, trying it’s best to fuck up one of the few remaining things to have survived my body’s demise.
I’ve always talked about mine and Pete’s relationship like it’s perfect; like we don’t struggle. Like Pete is the perfect, kind, caring and endlessly compassionate husband, and I am the ever grateful, understanding and equally compassionate wife. And of course, we try. But I’d be doing a disservice to everyone else with ME who’s relationship gets put to the test by this disease, if I wasn’t honest about the fact that sometimes … we struggle too.
So, we work at it. Sometimes during that work, I will tell Pete not to be such a massive dick and he will tell me likewise.
… I mean, of course he doesn’t know what he’s on about. Me, a massive dick? Surely not. I’m a fucking delight at all times.
Eventually, we will both simmer down and recognise that this situation is hard for both of us. Just in different ways. Sometimes we talk things through and clear the air. Sometimes we talk things through and piss each other off even more. Other times we will just brush it under the carpet, have a hug and move on. Because we are human.
When all is said and done, we have a choice: love or hate. And that’s where the real truth comes out:
… We hate ME, but we love each other. And love wins.❤️
