A few months ago one of my friends shared a link on Facebook to a post written by a friend of hers who’s had severe M.E. for 14 years now. It’s a beautiful piece of writing and explains what living with M.E. is like far better than I ever could. I have the permission of the author to reproduce it here.
This description of M.E. screams at the injustice of calling this disease “Chronic Fatigue Syndrome”. Not once in this piece does Sarah mention feeling tired. What we have isn’t “fatigue”. It’s a complete collapse of every bodily system until just mearly breathing feels beyond us.
This piece also demonstrates why the diagnostic criteria for M.E. needs to be tightened, so that people with M.E. don’t get lumped together with those suffering from “chronic fatigue”. I have chronic fatigue as part of my Ehlers-Danlos – it’s nothing like how I felt when I was severely affected with M.E.. Even now I know when I’m having a bad M.E. day as against having any other kind of bad health day, because I feel sick in every cell in my body and so weak I simply cannot stay upright – “fatigue” has nothing to do with it.
“The path of my illness has been a comet of destruction blazing its way through the centre of my life, and yet somehow it has left in its wake a lot of priceless blessings.
It began one friday in May 2000 at around 11.30 am, half an hour after I had a vaccination against Meningitis C. My legs turned into lead weights and my head was swimming. I felt so odd, so other, that I burst violently into tears and was sent home.
The next two and a half years were a slow crumbling of my health. I ricocheted between being ill at home for days or weeks at a time and being back at school and managing to manage. My body seemingly couldn’t choose one or two symptoms and stick to them. It was a child in a sweetshop grabbing chocolates, or a newlywed rifling through the Argos catalogue, happily adding more and more to their wishlist.
Sometimes I would be so sick that I wouldn’t be able to eat anything, and so weak I couldn’t raise my head off the pillow. Other times I’d have the sort of migraine that threatens to make your head cave in on itself. Lights of many colours would flash in front of me, my own personal disco, while the pain would pound and the sun would shriek at my eyes.
I grew clumsy, and forgetful. I grew more and more short-sighted, and there was a hovering fluffy cloud of cottonwool in my head that made thinking coherently like trying to wrestle a bear for a much coveted pot of honey.
I would go completely numb and because of that I developed an impressive collection of bruises, or else the merest whisper of touch would make me want to scream. A friend tapping me on the shoulder was so excruciating I thought it had dislocated. Someone grabbing my arm playfully rendered my arm so frozen and useless it was in a sling for a week.
I would blackout, I would ache all over and faint, like a regency damsel whose corset is perennially too tight.
I’d go deaf in one ear and my neck would spasm without warning and get stuck in awkward positions. Gosh I must’ve been devilishly attractive at this point .
I began to struggle to walk, stairs were mountains and if no one was around I’d crawl up them because it was easier. I clung to the walls in the school corridors when I could, to help me stay upright.
I kept unravelling. My doctor was perplexed and fairly unconcerned. He wanted me to go and see a gynaecologist “this is woman’s problems” he told my father. Eventually we pushed to be referred to a pediatrician. I was 14 then, nearly 15 and it was almost christmas. The gaps between bouts of illness were narrowing while the symptoms were growing more violent.
I remember being diagnosed with M.E and I remember sobbing with relief that all that was happening finally had a name. The advice was to ‘take it easy’. I was told if I did that, I would be fine.
Writing christmas cards that year took me twenty minutes at least per card. My hands wouldn’t work for me, my brain wouldn’t let me remember the words. I shook and it hurt. I don’t really think I knew just how ill I was. I had held on for so long.
I can’t even explain that better, except that as more and more bits of me fell away, I’d scoop them up and try and stick them back on. I’d try and keep going.
I collapsed outside the church three days before christmas, I couldn’t breathe, I had shooting pains in my chest and I was bent over at the waist in pain. I got myself home. Climbing the hill of my road in wildly faltering steps, seeing my house getting slowly nearer.
That was 21st december 2002. That was the last day that could even be described as normal in my life. The last day when I woke and bathed and dressed and went out into the world as though it was a possible thing to do.
I plummeted after that. Fell down a deep, dark well. The pain was everywhere and it had teeth and talons.
I couldn’t sleep. The tiniest noise was a mariarchy band playing into my eardrums.
I would go blind often, and it would last for hours. I would be completely paralysed and unable to even whimper to ask for help. I was so heavy with exhaustion that even when I could move, I would have to go slowly, as though lifting a great weight.
On the 6th of January, I was sent for a brainscan. The noise made me want to scream but I wouldn’t push the panic button. I couldn’t push it. I wanted to be brave. I got through 40 minutes before my mum, who could see my face reflected in a bit of mirror in the machine, couldn’t bear the silent stream of tears any longer and pushed it for me.
After that I could not walk. I had to be carried home. I could not stand without keeling straight over. I began to hallucinate; spiders covering the floor, the walls shrinking in, the bed swaying like a boat in stormy waters. My parents panicked. They rang the pediatrician and alarmed at my rapid decline, I was taken to the Atkinson Morley hospital in London.
My pupils nearly covered the whites of my eyes. I was an alien child, white as a ghost and blurring as I faded. They wondered if there was something in my brain they hadn’t found and sent me for another brain scan.
I didn’t want to be brave then. I wanted someone to save me.
The next day I was moved to another hospital, put on the surgical ward and weighed for anesthetic. It was a small ward. The boy next to me was Caribbean: he was kind, funny and in love with Anne Robinson. He was also dying of cancer.
A small boy opposite, William, was full of tubes and severely disabled. He was more touching than I can describe. His nurse sang to him and read him stories. When his mother came, she ignored him, spending her whole visit berating the nurse for the loss of his red shoes “he must wear those for daddy”. Daddy came, ruffled his hair without looking at him and went to a meeting about his care. The irony made me so angry I wished I was strong enough to get up and harangue either of them.
If the mother had more than fluff in her brain, it wasn’t obvious. The whole ward heard about her decision to join a gym, her new sex life with a younger man, her dislike of the hospital and her decision to move William somewhere else as soon as possible. All the time she said this, that nurse looked at that little boy with so much love. It was remarkable.
We soon found out I wasn’t having an operation, that was just a mix-up, and I could stay for physio or I could go home. They gave me pills to help me sleep but had nothing else that they knew to do for me.
I chose to go home and I began to sleep again, but the trip had exhausted me. My brain ran away from me. I could not understand the words people spoke to me. I had no words to give back to them. I had no memories, no name.
I stared at walls and I was afraid.
Time passed. I could show you the minutes; every one of them was a hill I had to climb.
I began to remember, I began to find words, I began to be able to stand. I was so hopeful.
Noise was a problem and in summer 2003 there were roadworks outside my house. I had no energy and they took what I didn’t have.
I became bedbound. By then, I was deathly ill. I didn’t move or open my eyes for four months. No one could touch me. I couldn’t stand anyone in the room with me. The clocks were stopped, even their ticking was a torture.
And then, and then… I sat up, I felt more alert. I could hold information in my head. I sat in the garden. I counted butterflies and learnt the names of flowers.
I wrote letters to those I loved. I dreamed of adventure.
The pain was still constant but nowhere near as brutal.
For 24 hours in June the cloud in my head evaporated. On the 20th July, it vanished completely. I spent the day feeling euphoric. I told my parents “its going to be over soon, I’m going to be ok”.
I was so hopeful.
I woke on the 21st feeling strange, as though my whole body was buzzing. It was a hot day and I spent it curled in a ball, trying not to be sick.
That night, I woke at 11pm. I seem to have a thing about 11’s. There was a strange whining mosquito like noise. Zipping past my ears faster and faster. I felt peculiar. I called for my mum and she came to sit with me. My dog came and curled up on my feet. The noise grew louder.
My temperature began to rise. I ignited. I was burning. I was covered in hot, hot needles and my head was slammed into a vice which was being tightened. I began to panic. “I can’t do this” I told my mum “I can’t survive this”. And I thought “No one can survive this, so in a moment it is going to stop”.
It didn’t stop. The first six months, I was so distraught, I had to fight to breathe through it. I couldn’t sleep without the heat waking me every half an hour. I was so exhausted, I cried and cried and cried. I begged God, I begged the saints, I begged anyone. I wanted to open the windows and scream and scream and scream until someone came running and made it finish.
My hands curled up into immovable fists, completely paralysed. My toes curled up too.
Noise was so bad that someone mowing their lawn at the other end of the street was crippling, and I didn’t have the physical strength to move out of the way. Even birdsong was too much.
My body was a cage. Even my eyelids were utterly unresponsive. It took me a whole day to rest enough to eat a big cup of soup at the end of it.
I burned and I fought and I felt desperate.
For six and a half years, it was so terrible that I had to endure it one moment at once or I could not have got through it. I was always telling myself ‘in one more minute it won’t be this awful’. Even thinking was excruciating and raw, like sandpapering my own head.
I would escape when I could to this mad and magical planet I created, called Gattrax…where cats thought they were Audrey Hepburn and mice wanted to be wizards. Oh I loved that world. It had all the life and laughter and joy that had been taken from me. I poured every good thing I believed into it and it sustained me.
Things got better in 2010, the fire receded a little, my hands opened like flower buds and started the slow road to normal functioning. I didn’t think I was going to die every day anymore.
I sometimes made it next door for tea and cuddles. I met and adored so many beautiful new friends online and got back in touch with old ones. I could talk to people again. I could laugh and have moments away from what was happening.
In 2011, I got an infection that went bad, and I nearly died because of my own stubborness about asking for antibiotics. I didn’t really rally after that. I needed more sleep than I could get.
In march 2012 I took a nosedive onto the kitchen floor. My mum found me thrashing about and my first words on coming round were ‘my hair is sticky’. Priorities obviously about right .
I declined dramatically. Noise besieged me again, light was spiteful. The pain was so intense I thought my brain was practising some form of surgery on me whilst I was awake. The fire burned stronger. I was propelled through those days by the fear I wouldn’t make it, I rested and rested and slowly regained lost ground. I stabilized and although I couldn’t get out of bed again, I could read a little and write a little and be online.
I am still regaining ground, and actually pushing my way into new, unchartered lands. My face, paralysed for so long is more and more mobile. I have some moments of energy. I have more clarity of thought, I don’t feel like my brain has to jump hurdles before I can make sense.
There have been such battles, I feel a kind of fierce joy that I have survived them and my heart unfurls a little flag of longing, at the hope I might survive whatever is to come.
Today, I walked to my garden gate for a friend who should be on this earth to feel the sunlight on her face but will not be again. She was my sister in life and for her I navigated two flights of stairs, with a loved one beside me, to hold on tight to.
I am shaking all over now and I really should rest but I wanted to write this. I want to write this because it isn’t just my story. It is a story replicated behind closed doors, thousands of times over.
We have an illness that takes everything, every identity we think we have (I even lost my fingerprints for several years), yet, it never takes our love. It never takes our ability to hold onto those who matter or to be held onto. Regardless of the miles between us or the difficulties in our way.
I am so proud of us. I am so proud of every sunset and sunrise we live to see.
The life I had planned has been stolen from me, and because I lost the whole world I have fallen so deeply in love with it that I think I might burst with feeling. All the magic of the forests and the rivers and the stars I know are out there somewhere makes me sing inside. Our planet is phenomenal, and it is nothing, absolutely nothing, in comparison to the breathtaking beauty of other people.
You make me weep with gladness sometimes, and you always make me want to take you in my arms and tell you that everyday I have known you, you have saved my life.”