My Story

Leeds Millions Missing 2019

Charlie Wainwright, 24

Myalgic Encephalomyelitis: M.E. and Me

“Charlie, your test results tell us that you’ve got M.E.”

When the girls at my secondary school were finding their cliques and trying to get noticed I was doing the opposite. Aged eleven I was starting to feel different, but everybody was. Bodies were developing and with blood suddenly beginning to escape our bodies at random times nothing seemed impossible or unmanageable. So, how my body felt never really registered as abnormal – because in your pre-teens what is?

It started off small: the stairs to class became harder to climb, mother nature stopped visiting me once a month, rooms were either way too hot or too cold and sometimes my feet and legs would turn blue and go numb. I got headaches. Then it was migraines. Then the lights in a classroom would blind me and two minutes later I’d be on the floor completely collapsed. Sometimes having wet myself because my whole body would black out.

First-aiders at the school demanded that I get back to class and face my ‘anxiety’.

Teachers couldn’t care as long as I was quiet and didn’t disturb the lesson.

Within six months I couldn’t spend a full eight-hours inside a classroom and I didn’t even know why.

Doctors did, eventually.

Anybody who got a second of air space had a different opinion, doctors included: brain tumour, depression, diabetes, cancer, anxiety or Crohns. They were closest with the latter. My big bad wolf is closely related to Crohns, cousins really.

Why haven’t I said my diseases name yet? Because you probably wouldn’t even know it. I can’t be mad, I didn’t either. I was so clueless that when my doctor said those two words I was actually relieved. I was just happy that there was a reason, a condition and, you’d assume, a treatment. Turns out the government pump more money into a cure for male pattern baldness than they do for eleven-year-old me who couldn’t stand up.

What prescription was I given? Sleeping tablets, an order to connect with other sufferers and a minimised timetable. He said: “Your body can’t cope with full time school, you need to listen when it’s telling you something. Right now it’s telling you that if you don’t slow down you will get more poorly.”

At twelve-years-old I was diagnosed with a condition that I wasn’t directly prescribed treatment for so why would I take it seriously? Commonly known as ‘Chronic Fatigue Syndrome’ I argued that nothing referred to as merely a ‘syndrome’ could really put my life on hold. So, I pushed on.

I walked to classes when my legs didn’t want to move until my right foot turned in because I was losing mobility overall.

I stared at white boards until words didn’t make sense and the light was blinding.

I collapsed outside of classrooms. Vomited in bins. Chucked packed lunches. I lived off painkillers and fought with the first-aider who told me that it was all ‘in my head’. It isn’t by the way.

It’s in my stomach where the natural chemicals and antibodies are imbalanced.

It’s in my blood where the white cells are ‘deficient’ on a good day.

It’s in my spinal fluid that swells.

The lymph nodes which protrude from my body.

The muscles in my body that deteriorate to the point of being wheelchair bound/semi-paralysed.

Poor circulation resulting in lack of temperature control, ie. either freezing cold or fever.

The pressure on my brain which causes memory loss and ocular migraines.

Heart palpitations and low blood pressure.

Sleep disturbances.

Photophobia/hypersensitivity to light and sound.

Frequent tendinitis due to muscle deterioration.

Pressure on brain to the point of causing hallucinations, severe memory loss and disorientation.

My immune system, or lack of it, doesn’t work to the point in which I’m currently prescribed a treatment most commonly used on cancer patients pre-chemotherapy to try give my body something, anything, to get out of bed in the morning.

That doesn’t sound like it’s in my head anymore does it? It wasn’t in my head when I couldn’t shower myself, wipe my own bum or walk down the stairs.

Just because I don’t have an epi-pen, diabetes kit or a diagnosis that you see fundraised for during ad-breaks doesn’t make my disease any less real. It just makes my isolation feel lonelier. My bedridden days harder. And relapses more difficult to explain to those who do try to care.

“I’ll be okay”

I may be angry at those who deny my disease but I’m angrier at myself, for the months I pushed when I was just twelve. I didn’t want to slow down. The doctors, though diagnosed, weren’t helping – medicine wasn’t that advanced, but thank god the bald men were getting hair treatments, right? We saw specialists, spoke to other sufferers and really did cut back on my daily activities. But, ME doesn’t care about that. ME didn’t care that I hadn’t kissed a boy, that I wanted to continue playing sport or that I wanted to see more than hospital walls and my bedroom.

I pushed, turns out ME pushes back harder. Two years bed-ridden with my mother for company (she had quit her job to become a full-time carer) taught me that. Two years. Don’t just read that, let it sink in. I sometimes say it so flippantly that I forget the gravity of that fact.

Relapses: “But you always look so healthy?.. Surely it can’t be that bad”

I’m classed as a high-functioning sufferer, after recovering from my two-year relapse in my early teens, I slowly found my way back onto my feet with home tutors, painkillers and lots of tried and failed techniques. Specialists were spoken to and I began to actually listen to those symptoms that I now recognise as warning signs.

A relapse can occur from one of two things: over-exertion and/or an infection. If you’ve got a ‘common cold’ you can bet I’m not seeing you for a fortnight – and don’t moan about it to the woman whose body really would collapse from what is merely an inconvenience/slight ailment to you. You won’t get any sympathy, because most of you don’t give me any until I’ve wasted my precious energy justifying my disease.

ME and Me

During my hospitilisations, I just lay there. The severity of my situation can hit me. I’m no longer a clueless teenager, I’m a woman. I’m old enough to think further than the pain and look on to my life.

How many relapses will I suffer? How would I ever carry a baby? Who will love a woman they will sometimes have to be a carer for? Will medicine catch up fast enough? When will I be able to just say ME and people will get it?

My mind oftens turns to Lynn Gilderdale whose infamous suicide broke my heart after ME left her unable to move, swallow, talk or eat – some days the disease wouldn’t even let her recognise her own family. Lynn lived her life communicating through sign language, surviving off tubes and blogging about wanting to end her life.

More recently twenty-one year old Merryn Crofts died after three years bed-bound from the disease, her weight dropped to six stone at the time of her death. 25% of sufferers are bed-ridden at any given point in time. The reality is that many who suffer severe relapses never return to a full functioning lifestyle.

Severe sufferers such as Jennifer Brea, creator of award winning film Unrest, comfort me. I’ve spent all the time since my diagnosis finding strength from blogs and online diaries but nothing has touched me more than her film.

Where this leaves me…

Since my diagnosis nearly a decade ago I have suffered only two severe relapses: one lasting two years and a smaller relapse in 2018 that lasted six months. How does this make me feel? Lucky. I’d be luckier if I wasn’t ill at all, but I’m lucky enough that my body seems to recover from relapses while others do not. This does not mean my health is rarely an issue, every small infection or common cold causes me to worry and relapse slightly – but my body can handle it.

On a bad day I hate my body, I hate the confinements of my disease and worry about future relapses that I may not ‘bounce-back’ from.

However, overall I am positive. Positive that my body has only suffered two severe relapses in a decade, positive that despite my faulty immune system and the side effects I live a happy and active lifestyle. So active that I’m able to work full time in my dream job and manage an active social life.

Whenever I’m poorly I read others stories and feel comforted, so why not add my own? I’m also tired, shock (little ME humour), of hiding a disease that’s hard to explain but then getting angry when people don’t understand.

I want other sufferers who may be relapsing right now to read my acceptance of the disease, I haven’t hid any of the gruelling side effects but I am telling you that most of the time it’s uncomfortable background noise, because most of the time I am in remission.

My first relapse left me wheelchair bound, underweight, unable to walk and I didn’t recognise my own family. Whereas medication and support from the NHS has meant that my symptoms are managed to a point where I would class them as moderate.

During relapses I want to be able to comfort myself with the fact I’ve only ever done what’s best for my body while living my life. I want to enjoy my health instead of grieving it when I’m bed-bound. There’s always the possibility that one relapse will hit me too hard but also the chance that I may never suffer another. So, I choose positivity until I haven’t got any left.

Every day I plan my life around management and most days, due to medication, I live without symptoms of the disease. Management is not the key to remission, my most severe relapses are testament to this, but it does help.

I work full time. I dog walk. I date. I exercise.

I am in a position where I am able to fight for others with the disease while also fighting for my own health. My own future.

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