This is a post that I wrote many months ago when I was really struggling, it never got posted for some reason. Today, I’m struggling again and fearing what that means.
Whilst I cannot pick out the threads that Depression weaves through my life and thoughts, I am very aware of the limitations that ME puts upon me. I know how my life could and would be so different if I didn’t have to fight this mongrel-beast every day. However, I doubt myself and the severity, sometimes even the existence, of my illness. Maybe it doesn’t help that ME is shrouded in confusion, political intrigue and complete incomprehension and lack of care. Maybe it doesn’t help that people don’t take me seriously.
This is how my life gets. Judge for yourself whether I’m making it up or whether I can really just try harder.
Do people really awake refreshed and eager for their day or is that just some fairy tale or something that only toddlers in on the secret of perpetual energy and motion know about? Some mornings I wake and get out of bed in one move, perhaps my brain hasn’t quite woken up yet and told my body how and where it hurts. Sometimes the pain, the ache, the stiffness kicks in as I round the corner of the bed. Sometimes I can get all the way to the bathroom and back. Maybe it’s because lying itself just gets so painful that my body is just glad to be stretching, moving again.
I feel every bump, dip and metal spring of the mattress, I feel every crease and wrinkle in the sheets, some nights my best friend of a duvet becomes a suffocating mass squashing the air out of me. It’s just as well that I’m as flabby as this otherwise I’d have my bones to contend with too. As it is, my joints can’t take their own weight and pressure and whichever side I lie on goes numb so quickly, fighting poor circulation and pins and needles all the night through. I can’t regulate my temperature so even in the middle of summer (if we have with appropriate temperatures) I can find myself needing a hot water bottle, clutching it tight because I’m frozen through. Other times, cold nights even, I will suddenly be boiling hot, almost feverish and throwing the covers off. Other times again a heat source such as a hot water bottle will scald my exterior but do nothing to take the chill away, it’s truly disconcerting having both extremes of temperature at once. Lately, I’ve been finding that I don’t have enough strength to sleep on my side, I was using an arm to brake myself, hold myself up but I can’t even do that anymore. I fall in a crushed tangle and I find myself more often or not sleeping flat on my face, which doesn’t help the breathing or the overheating, with my two firsts up by my head, baby style. Babies can’t hold themselves up either. It’s pathetic and uncomfortable.
I know a lot of people seem to think that it’s the norm to take a shower every morning, as if you’d self-implode in a miasma of bacteria for one missed shower. Well, sorry to break it to you, ME will change that for sure. Sometimes I have to think so far ahead, planning not just for each stage of my toilette but the rest that has to be calculated to allow me to make it out of the door in one semi-civilised piece that I have my shower the night before so I have plenty of night hours to sleep off the effects. I rarely have one in the morning anymore. Mornings are too much. Especially if I’m expected to be out and about. If not, it might be the middle of the day like some slovenly adolescent, especially in midwinter when the bathroom is freezing cold.
The shower poses particular changes. When I stayed at someone’s recently I realised however that I should be very grateful that we have a shower tray rather than a bathtub. I could barely climb in and out of that! The biggest problem is the amount of energy showering requires; there are the standing and the heat and the steam and then the cold afterwards. I can’t stand for very long at all. And I’ve already mentioned that I struggle to regulate my temperature. Sometimes I only realise how dead and cold my feet are when I feel the scalding water on them, slowly bringing them back to partial life. Sometimes I have to turn the water hotter because it feels too cool. I worry that one day I will get burnt. I’m glad too that we have a shower that you can leave the temperature set rather than have to turn it through from off to hotter, I trust blindly that the temperature is the same as yesterday.
After nearly every shower now, I end up resting on the bed afterwards. Then there are days when I’m not well enough to take a shower at any point, even with nothing else to do. I struggle with this, guilty because of this culturally induced belief of miasma. I hate not having clean hair. Even when I’m Depressed, unable to motivate myself to anything, I wash my hair.
Even if I take a shower the night before, my morning schedule still has to be simplified and reduced to the barest of elements in order for me to be able to manage a morning commitment. Sometimes I get everything ready the night before and sleep right up as close to possible as to when I need to leave. Other times it seems to work better that I get up about an hour earlier, do what I need to then have a nap before going out.
Just writing about getting up is exhausting!
There are so many things that need doing, so many things that I desperately want to do. I lie or if I can, I sit up, in my bed and see the reminders of these things around me. How easy it would be to pick up a book or a duster! But is it? I don’t even have the strength for that. And it makes me feel wretchedly useless. I lie thinking that I need the toilet and it takes me half an hour or so to summon the strength to get out of bed. I walk slowly, stiffly to the bathroom then to the kitchen to wash my hands. I’ll grab a drink or something whilst I’m up so I don’t have to get up again. And then I have to collapse on the bed. Exhausted. For what? I’ve done nothing. I’m hungry but I don’t have the energy to prepare some food. I go without. Or wait until the next bathroom trip to grab a snack. The washing up and washing piles higher. But I can’t lift or stand. Nothing gets done because I genuinely can’t do it. It breaks my heart and destroys my soul every single day.
I’m so glad that we have a flat, all the rooms are close together and there are no steps between levels. I can’t do stairs anymore. And when I do have to go out then gravity usually helps me down, I don’t have to worry about the slow haul up the stairs until I come back. Which is just as well or I’d never get out.
I can’t follow instructions anymore, even recipes. I forget where I am and what needs doing next when I’m preparing the simplest of dishes. Who forgets how to boil pasta and stick commercial sauce on the top?! It’s ridiculous, stupid even. And I hate it. I can’t open lids and I can’t grip and turn tin openers. I struggle to lift a pan of pasta only because it’s my responsibility to feed us both. Graters are difficult too, dangerous at times. I can’t slice cheese much less anything else. The world’s sharpest knife might as well be blunt in my weak and clumsy grip.
I could go on but I don’t have the energy or the courage to face anymore things that I can’t actually do anymore. It breaks my heart, and even my soul. ME isn’t a choice, ME isn’t me. But this is my life.