To quote a famous The Who song- ‘Can you see the Real Me’? (5;15-Quadrophenia)
The First photo is the face I present to the world. The face you see is the one when I’m up and about. I dont feel too bad.I have make up on, my daughter has blow dried my hair, I have decent clothes on. I’m out of the house being sociable! ‘Oh you look really well’ is the usual refrain! I just nod and agree.I cant be bothered explaining and lets be honest you dont want to know really. Nobody likes a moaner constantly harping on about their condition.
Imagine only being able to go out once a fortnight and that includes medical appts. Imagine how frustrated, lonely and isolated you’d feel.
But remember this. I am NEVER symptom free. Living with M.E/Fibromyalgia means 24/7 365 days a year, constant pain and exhaustion, unrefreshing sleep, brain fog, and a host of other symptoms. Its just the degree which varies.
The second photo is me most of the time.This is my ‘Normal’. Either resting on the bed or totally bed bound unable to sit up, requiring 24 hr care. This is what you dont see.
I want you to imagine firstly only sleeping for 1 and 1/2 to 2 hours at a time all night every night. Waking, nodding off, most nights not being able to get back to sleep and being awake for 2-3 hrs at a time. Having vivid, bonkers dreams, feeling like you’ve had a light doze not a deep refreshing sleep.
Imagine then trying to wake up around 10ish am and feeling so exhausted that you cant even rouse yourself until 11am.
Imagine waking up in a bed of treacle. The treacle is thick and sticky and weighs you down zapping any strength you had. You have to haul yourself out of that bed of treacle, fighting to get going. But it remains coated to your body so that every movement is heavy, tiring and exhausting.
You force yourself downstairs to make a drink and warm up some food , you dont have the strength and are in too much pain to cook for yourself. Luckily today you can do this. Other days your body is so swamped with exhaustion you cant even lift your head off the pillow. If you’ve misjudged it and theres no one home to help you’re up the creek. No drink, no breakfast.
Aswell as wading through treacle, weighing you down all day, you’re also in pain from head to foot, aching, burning, shooting. Every muscle is protesting. Imagine you’ve just done hours of exercise whilst having the flu, your muscles are screaming, weak and you just hurt.
One way to help ease the pain is to have a long hot soak in the bath. You need help getting in and out, you need help washing. But this gloriously soothing bath might ease your aching body but it exhausts you. That sticky treacle hasnt washed off.Its still there weighing you down, making you wade through it. After your bath you have to just lie on the bed and rest and recoup before getting dressed. If you’re not going out, which is the majority of the time you wear easy, comfortable clothes as you also have Allodynia, this is nerve pain on your skin surface so that even the touch of a cotton top can send hot, searing pain over your whole body. Jeans are too uncomfortable and heavy to wear so its soft jersey leggings and a t-shirt. No buttons, not tight wastebands and soft on your skin.
Imagine spending the rest of your day on the bed, you can manage to go on the computer for a short while. You can do some Mindfulness colouring in. You can watch TV for a while or listen to music. Your tea is made for you and you can get downstairs to eat it. You can just about manage to sit downstairs for half and hour to let the meal digest before you have to go back up and thats it for the night.
But there are days when the exhaustion, the pain, the weight of all that treacle is so weighing you down you can even sit up. You need someone to bring you all drinks and food, help you to the loo, bath and dry you like a baby. The light hurts your eyes so you have to lie with the curtains shut. TV is painful to watch and you’ve no concentration so there’s no TV, no music, no computer. You’re sensitive to sound too and certain pitches cause you physical pain. You’re too exhausted to speak . So you lie in bed feeling that even breathing is too exhausting and an effort, with the curtains shut, ear plugs in and you doze .
You’re not living. You’re existing. You’re isolated ,upstairs, in the bed room, alone. The household is busy around you as the family get on with their lives. You’re very lucky to have a wonderful caring Husband and children who check on you frequently and give help as required (many dont and how they cope alone I’ll never know), but you’re still mostly alone. The phone rarely rings.
Imagine that you can no longer cook for yourself, you can no longer drive, have a regular social life, shop, clean, iron. You rely totally on another human being for absolutely everything we all take for granted. Its soul destroying. This is the Real Me you dont see. This is M.E