I’m tired. I’m tired today. I’m tired most days. I can’t sleep it away and it gets boring after a bit, especially when I end up becoming a prisoner in my own home. A home that rapidly becomes messier and dirtier because I’m too tired to deal with it. Sometimes you want a little hope, that tomorrow you’re going to feel good. There doesn’t seem to be any hope sometimes.
Mental health presents its own challenges. People don’t take it seriously enough. I have another invisible illness that even fewer understand. It’s hard to explain. Having ME means you get tired. Everyone knows what tired means. Or do they?
The biggest symptom of ME is a lifestyle itself, it’s the tiredness. The never-ending, aching tiredness. You see ME causes muscle fatigue. What does that really mean though? To you, to me, to anyone?
The best comparison for ME is flu. THE flu. The proper flu where you feel like death warmed up (or chilled down) and you’re just so achy and sore everywhere. The proper flu where you can barely crawl out of your bed and you just can’t do anything. That’s flu. And that’s kind of how ME hits you. You’re exhausted, drained by everything. Everything becomes a challenge.
Muscle fatigue sounds like aches and pains. Perhaps you’ve spent a day gardening or hiking and come home feeling sore and achy, you know that feeling? Maybe you’ll feel worse in the morning when you get up but it’ll pass. Have a hot shower, take some medication. But it’s a good feeling, it comes from success and achievement.
There’s nothing good about ME’s aches. There is no success, no achievement. It just hits you out of the blue, you can wake like it, you can do nothing all day. You wallow in it, day after day.
Muscle fatigue isn’t just about those aching limbs and sore back that labour rewards you with. There’s an awful lot more muscles in the human body than that. For example, your lungs are muscles. It hurts to breathe, I struggle to breathe. They think my ‘asthma’ is actually just part and parcel of my ME symptoms. Your heart is a muscle. It aches too and gets tired. Your entire digestive system is inherently based on muscles. Let’s not even go there. Your brain is a muscle. It hurts, it aches, it gets tired. You can’t think, you can’t find words. Then despite this all, you try to keep smiling. Too many muscles involved.
Emotions drain me, the good and the bad. A light scarf, even a necklace, they quickly become to heavy for me to wear. Sound hits me like a rubber wave of pain. It’s exhausting to be exposed to loud noises, it tires every part of me. I avoid certain television programs and films because they’re just too demanding, too much emotion and too much stimulation. I like the lights turned down low, it’s more restful. Socialising, never mind anything else about it, is just so tiring. I can’t keep up.
There is no rest either. Nothing seems to shift it. You lie in bed trying to rest and everything is so uncomfortable. The duvet is heavy, like a steel casing. It presses down. The mattress has more springs in it then seems humanely possible. They cut in like harsh welts against the skin. My limbs are heavy and lie weighted against the bed or each other, causing their own pain. I have to keep moving to fight the pins and needles. The pain comes from within and without.
That’s just the tiredness side of it. ME delights in throwing up all sorts of quirky symptoms out of nowhere. Just to give you a little something extra to deal with. My circulation is dire, I spend most of the time with attractively grey corpse-coloured feet. I can’t go in the freezer because the cold ‘burns’ and makes me feel ill and even more tired. I get a sore throat regularly, usually it’s a warning, a precursor to a bad episode. I’m always so, so cold.
ME is the enemy I spend my life with. We’re in constant battle. ME isn’t me, I’m someone else. Or I try to be. But you see ME has an iron grip on me. This autumn is a milestone that I’d rather not have reached. I’ve spent half my life now with this beast. That’s all my adult life. I don’t know what it is to be a well adult. I’ve had some good patches, of course, along the way. But half my life. It’s crazy. After this there’s only more years with ME and fewer years of having been well. I’m not going to escape, I can’t. I know that. But I’d like some hope.