Having quality of life again is shit.
No, hang on, I mean it’s great. Well, mostly.
A few years ago, when my ME/POTS was Severe, I could only dream of doing the things I can now. Because of this, I celebrate every win, big or small, with the enthusiasm of a puppy; one that’s pissing itself with excitement (my bladder can totally relate!) Still, when it comes to sharing my joys and triumphs on social media … I always feel a bit guilty.
My guilt is grounded in the fact that I haven’t done anything different to anyone else, yet my condition has improved (albeit not cured). It just doesn’t seem fair.
When I was Severe, and dependent on Pete for most aspects of daily care, I would read about others who had also been bedridden once, who are now running or hiking up mountains, and travelling. I would lie there with a mix of feelings, ranging from ‘fuck you’ to ‘maybe they didn’t really have ME after all’ to ‘I wonder what helped them’, all the way up to, ‘this gives me hope. Maybe I’ll be able to do all those things again one day.’ Where I was in terms of acceptance of my own situation, usually influenced how positive or negative my feelings were about these stories.
Getting a chance to live again (albeit with limitations) after years of Severe ME/POTS feels like winning the lottery. Except, unlike the real lottery, I can’t spend my winnings on making life easier for others. And that REALLY sucks balls. I have gone from being housebound, bedridden, electric wheelchair, stairlift, the works, to … well … feeling pretty darn rich.
And I am grateful. God I am so grateful. I make a sandwich – I’m grateful. I play with my son – I’m grateful. I watch TV – I’m grateful. I leave the house independently, and on foot – I’m grateful. I socialise – I’m grateful. I have a bath and wash my hair unassisted by Baldlilocks and the Three Hairs (Pete) preaching best hair management techniques – hallelujah!
But so many others with ME/POTS can’t. And that’s deeply unfair.
The feedback I’ve had from this community has always been positive and encouraging, and means a lot to me. The idea that my writing could help just one person to feel ‘seen’ and hopeful for a better future (however that looks) is the force which motivates me.
You have never, not even once, given me reason to feel guilty – even when your own health situations have been particularly difficult. And that says a lot about you, our lovely community of chronically ill cheerleaders. (I was going to say ‘well-wishers’. But then I thought, ‘fuck it … pom-poms can still be used lying down.’)
So, on that happy note, I just want to say a massive THANK YOU. Keep spreading the love. 🥰
