To spend every minute of every day plagued by debilitating symptoms is incomprehensible to most. To be bed bound, unable to shower for months or years, to tolerate the curtains being opened or long conversations. But that’s what it is to have Myalgic Encephalomyelitis particularly on the severe end, and there are many much worse. The term “Mild” ME is a trick given it’s a huge loss of functioning, still unimaginable to most. ME is a severe illness.
I can’t pick a photo that can truly sum up ME and that’s because ME isn’t just one photo, it’s every moment of every day. It’s all these symptoms and so much more. ME has a million faces just for me, let alone all the others. And I can’t show you the pain, can’t show you all the symptoms. I don’t have photos of my worst moments, those moments I am unable to take a photo, unable to think, talk or open my eyes. Fighting to stay conscious as I’m trapped in a body that won’t co-operate and starts to shut down.
These descriptions may seem dramatic but they aren’t, and the reality is that words like ‘pain’ ‘fatigue’ just aren’t enough to convey the regality, this is the best I can try to describe them. Fatigue is not simply tiredness and my perception of pain has changed so much. I debated the order but I can’t rank them in order of detrimental effect. They all coexist, the symptoms hit all at once, in PEM or on a general day, there’s never just one, there’s always multiple and I’m suffocating under this pile of symptoms as it consumes me, desperately wanting to break free of it, but I can’t. Alive but not living.
ME is debilitating beyond imagination, like being imprisoned by your body. And it is scorned and ignored. Our fight is silent since it’s often hidden, and we remain the #millionsmissing so today on #meawarenessday (and on this account in general) we share in the hopes someone may finally listen. On here most are aware of what ME is, I hope if you weren’t you have learnt something today. For those feeling heavy from the content shared, take care of yourself, and everyone.
If you have ME you are not alone, I’m here with anyone wanting my support 💙
