This week, Action for M.E. is running a ‘Hidden Faces of  M.E.’ campaign to highlight  ‘how M.E. is a hidden illness that often can’t be seen or easily identified just by looking at someone who has the condition and to help people understand what having M.E. feels like.’ 

To this end, I thought I’d open myself up and share a few of my days. I don’t normally let others see me at my weakest, most vulnerable points – I usually say, ‘Oh, I’m fine.’ – but this is for a good cause.  It may be uncomfortable to read.  It was definitely uncomfortable to write.  If it helps raise awareness, and lets fellow sufferers feel not so alone, then it’s worth it.

 Above: Me on a ‘good’ day.
Day 1; Part 1: 

07:00     Wake up with overwhelming exhaustion and with every muscle, bone, joint, and nerve in my body aching like a bad ‘flu’. Spend two hours in bed trying to feel human before getting up.  Delay is due to the added onset of nausea, room spinning, and…I can’t remember the last word.

09:15     Collapse on couch to see husband off to work. Try to focus, but sight starts swimming. Stare at the ceiling. Room spinning, nausea, exhaustion, brain confusion rise. Husband asks, ‘What’s wrong?’  I can’t answer.  ‘Can’t,’ I mumble back.  8 years in, he gets it.  He kisses me on the forehead and wishes me a good day.  ‘Try not to worry,’ I say.  I try to force some ‘brightness’ into my voice, but he’s not fooled.  ‘That’s my prerogative,’ he tells me.

09:20     I start crying.  I’ve remembered I haven’t had breakfast yet. I was too nauseous to eat before husband left for work. There’s no bread left. Cry with exhaustion about having to get off couch to make it to kitchen. Ask husband to take money out my purse and ask dad to pick me up a hot roll from the village shop on his way back.  Dad’s dropping husband off at work today because I can’t.  I’m not safe to walk, nevermind drive.  Breakfast crisis solved.  Feelings of inadequacy rise.  ‘I should be able to do…’ I say to myself and then I remember my CBT training and try to correct ‘unhelpful’ thought patterns.  Phone mum.  No answer.  Lie down.  Weight of limbs excruciating.  Even my ears feel too heavy for my body.  Shh!  Rest.

10:00     Eventually get through to mum on the phone.  ‘I can’t come shopping.  I’m sorry,’ I say.  I feel helpless about not being able to provide food for myself and my animals and my husband by myself.  I’m nearly 40 ffs. My parents are both pensioners and yet they’re doing my shopping.  I am not able to walk to the end of the street, nevermind around supermarkets; not even if I lean on the trolley as a baby walker (my usual).  Lie down. Shh! Rest.

10:30     Dad appears at front door with a breakfast roll.  I’m so thankful.  My arm muscles ache to get back into my dressing gown to answer the door.  They tire out as soon as I’m getting the last arm in.  Sit down on bed.  Zip up dressing gown.  Hold onto stair handrails for dear life.  Try not to fall over dog. Squeak with the effort it takes to reach the bottom step.  Answer door.  Wobble on feet.  Sit down on bottom step.  Thank dad for breakfast.  He says, ‘I’ll take the woofer out later on.’  I almost cry with relief.  I’d been worrying all morning about how to get the dog walked.  Dad will bring my shopping round later on.  Stumble around kitchen making tea.  Thankfully, we have a dispenser kettle now, so I don’t struggle to take the kettle to the tap etc.  Wobble upstairs, one step at a time.  Return to bed with electric blanket on for muscle/joint pain.  Quick look at the internet.  Can’t focus.  Eyes swim. Head aches. Transfer money into mum’s account for shopping. Need to feel like a ‘worthwhile citizen’. Hope I’ve clicked on the right accounts.  Eat breakfast slowly.  It’s cold by the time my jaws find the energy to chew and swallow.  Wrist shakes when I try to drink tea.  Give up.  Lie down.  Shh! Rest.

11:00     Force self out of bed.  Mum and dad are coming in a couple of hours.  Animals need their water/food bowls refilled.  Litter tray is full.  Sit on floor to scoop out tray.  Crawl onto hands and knees.  Use wall/radiator to stand up again.  Plug in hoover.  Try to scoop up feral litter.  Realise hoover needs emptied.  Look at hoover for a few minutes trying to work out how to empty the chamber again.  I swear I knew how to do this yesterday.  Success.  Arms/hands/back ache.  Knees become very weak.  Glands in neck swollen and aching.  Room spinning.  Put dirty litter into carrier bag.  Abandon carrier bag at front door.  Achievement unlocked.  Struggle back to bed.  Lie down.  Shh!  Rest.

11:30     Force self back out of bed again.  Make it to kitchen.  Lean on sideboards to get round.  Run water and rinse out a few cups.  At least mum and dad can have a cuppa when they come round.  Sit down.  Quick rest.  No thoughts.  Just white noise and pain and the ever present exhaustion like wading through treacle.

11:35     Force self into shower.  Been unable to wash hair for a few days.  Not had the energy.  Scalp tingling and itchy.  Nothing for it but to climb into the shower cubicle.  Thank goodness I cut my long hair ultra short.  Hold onto wall rail.  Wobble a bit. Stop with the hair because the arms are too sore, too heavy, too tired to keep scrubbing.  Hold onto rail and try to regain focus.  Once breath and energy and muscle use regained, a quick soap of the most smelliest body areas and step out the shower without washing back.  Not strong enough to reach.  Worry about it being covered in blackheads and spots.  Lean against sink until room stops spinning.  When breath and energy and muscle use allow, quick towel dry.  I swear the towel is made of lead or concrete.  How can it be this heavy?  Sit on toilet.  Wait for breath and energy and muscle use to allow me to brush teeth.  Quick minute brushing of teeth.  No make-up.  Tie on head scarf.  Not strong enough to dry hair.  Body/mind battery draining rapidly. Sit down again. After rest, climb into soft, easy clothing that is not too tricky for the brain to complete (e.g. buttons) and doesn’t feel too scratchy or heavy on my skin.

11:55     Mum phones.  Cry about getting from the downstairs to the bedroom in time.  ‘Get on with it,’ I tell myself, rather too harshly, I might add.  Climb Mount Stairs and arrive in bedroom too late.  Missed call.  Make it back into bed.  Body back to being one large never-healing bruise.  Lie down.  Phone mum back.  It was a shopping related query.  I can’t talk very well.  Words are back to front. I’m not understanding what she’s saying.  She can’t hear me.  She puts dad on the phone.  He can’t hear me.  I force the air into my chest and raise my voice to a squeak. ‘I don’t know.  Get what you think,’ I tell him.  I can’t.  I just can’t.  It’s too much.  Chest aches.  I’m breathless.  I start crying again.  My brain doesn’t understand.  The ‘flu’ symptoms are overwhelming.  Feel guilty about not being able to help mum and dad when they’re trying to help me. Close eyes.  ‘I’m so stupid,’ I think.  Shh!  Rest.

12:00     Noise in street is too loud.  Sunlight is too bright.  Shut curtains.  Muscles tense further with noise.  It’s painful.  It’s an actual pain as if I’ve fallen over and bruised my knee; except it’s an all over body bruise from my eyelashes down to my hairy hobbit feet (I’ve been unable to shave for a week or so).  Remember about the ‘Hidden faces of ME’ thing and wonder if writing an ME diary for a week would help others understand how I am as I am, and if it’ll make other sufferers feel less alone?  Think, ‘I’ll try anyway.’  Start touch typing.  Words flow without me looking at the screen.  It’s automatic as if I’ve opened a bottle.  Out they pour.  Stop.  I get the day of the week wrong.  Fight feeling stupid again.  I’m trying to be a writer, for f*ck sake.  Worry about the mixing of past tense and present tense in what I’m writing.  Further upset about confusing semi-colon use and colon use.  Cry about not being able to trust spellcheck as it always gets the grammar wrong anyway.  Try to laugh and give myself a break. It’s half-hearted. Lie down.  Close eyes.  Start typing again.  Worry about how I’ll make lunch and get the dog out for another walk.  Breathe out.

13:00     Mum and dad arrive and put away shopping.  They take me to theirs for lunch (they live over the back from us).  Rest on the couch.  Food and drink come.  I’m very lucky to be cared for.  Dad takes the dog out and runs me back home.  Struggle to put washing out.  Husband needs shirts for tomorrow.  He’ll be back late and in the dark.  Our radiators don’t work.  No choice.  Take washing outside, one step at a time.  Hang onto washing line.  Arms ache after putting up one sock.  Rest. Peg. Rest. Peg.  Rest.  Peg.  Exhale.  Say, ‘Hello, handsome,’ to next door’s dog.  Wobble down steps.  Notice I’m standing erect for the first time today.  Smile. Take it as a win.  Make a cup of tea. Wobble upstairs.  Bed, glorious bed. Dark room.  Quiet room. Snuggly cats.  Proofread this. Feel like a ‘citizen’.  Shh! Rest.

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