Myalgic Encephalomyelitis: M.E. and me

This will be the first time I’ve published any content directly relating, and somewhat recognising, my disease. I think that it is important for readers to know and for me to admit, because my illness is my most vulnerable area and I’ve never felt the need to put into words how I feel and struggle in case others attack that side of me – a side you’ll learn already attacks itself. 

“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, 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.

29004286_1998477260411840_844873302_nWhat 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, M.E. doesn’t care about that. M.E. 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 M.E. pushes back harder. Two years bed-ridden with my mother for company (she 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 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.

28908194_1998477300411836_74700780_nA 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.

Six weeks ago I was ‘functioning’ pretty well, gym five times a week and balancing my third year finals. The mention of a relapse by my doctors was just laughed off by myself, I was dropping weight ridiculously fast and vomiting twice a day but I was starting my days in the gym and ending it at university in the evening.

My university career had once been interrupted momentarily by my M.E. and other than one other hospitalisation I hadn’t been doing too badly. This had left me feeling comfortable, no longer afraid of those bed-ridden memories but positive that vomit never ruins my day.

28833026_1998477253745174_540146594_n

An ambulance was called by a specialist nearby after I rang up in a flood of tears at 7AM because my legs wouldn’t work and my tummy wouldn’t stop over-working. I had gone to sleep sick and woken up back in the body that imprisoned me all those years ago while covered in my own bloody sick – quite literally, bloody sick.

In less than twenty-four hours my body went from completing a 6K dog walk to being strapped down in a darkened ambulance because my eyes couldn’t handle the lights. I vomited over ten times in the waiting room and had to be wheeled from scans to tests all the while wondering how long this relapse was going to pause my life.

I was hooked onto an IVF drip and I didn’t walk unaided for four days, let alone use the bathroom or wash. Science and medicine is moving forward but my body, like others, can crash faster than science cares for.

M.E. and me

During my first night on the ward, once my housemate and mom had gone home, I just lay there. The severity of the situation just 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 M.E. and people will get it?

That first night I wheeled to the disabled toilet and wept, I mean really wept. At twenty-one I don’t want my mom to have to wash my hair because I can’t hold a shower head or dry myself.

My mind turned to Lynn Gilderdale whose infamous suicide broke my heart after M.E. 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.

Most recently twenty-one year old Merryn Crofts died last year 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.

Though 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 my current relapse is due, with medication, to last at least three months. How did this make me feel? Lucky. I’d be luckier if I wasn’t ill at all, but I’m lucky enough that my body (so far) 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 one decade, positive that despite my low immune system and the side effects of that I live a happy and active lifestyle. So active that most reading this won’t have ever realised I was poorly.

Why now?

Whenever I’m poorly I read others stories and feel comforted, so why not add my own? I’m also tired, shock (little M.E. 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 they’re merely 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 a less severe relapse has this time 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 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 drive. I am just months away from completing my university degree. I date. I exercise up to five times a week – but don’t hold me to that. I can walk. I can run. Most of my friends are unaware of my disease.

This relapse isn’t permanent and there’s every chance the next one won’t be either.

My comments section is open to all sufferers and those supporting us. If you wish to talk privately then feel free to email: charliewainwright1996@yahoo.co.uk 

 

 

 

 

9 comments

  1. As a documentary lover and someone with the utmost curiosity in the brain, I fell in love with Unrest. Until that doc, I didn’t know this existed or even how many people suffered. It was eye-opening, especially the part with all the shoes to represent how many people have this disease. I wish you a very quick recovery. ❤ xoxo

    Liked by 1 person

  2. Andrea

    To the bystander ME is so difficult to understand, so what you tired, I’m tired too. But that is not even a tenth of it, we need to get over this thought its tiredness, its how it effects the whole body people need to understand & when we understand that then we will get closer to finding a cure. I’m an onlooker with a family member suffering & still l see little change in attitude in society, this is because it is somehow hidden, disregarded as not a real illness, dismissed as a mental health problem, oh, it’s stress. Live with someone & then you will understand their fustratration, why did Charley feel the need to not talk about it, that’s because it has the yuppie flu label still. She is fortunate because for the majority of time, with care, she can lead a full & rewarding life, others aren’t so lucky, have a job.

    . You don’t understand? Watch “unrest” then you will. Thank you Jennifer Brea for opening the door. Lets not talk, lets shout & get the illness understood, only then will treatment and attitudes change

    Liked by 1 person

    • Wow Mom, this is such a strong comment and has me in tears reading it on the train! You’re incredible and could not ask for a more supportive or understanding person in my life – you’ve always had my back and I really appreciate that. I appreciate how much of yourself you gave to seeing me through my first relapse and the continuous support ever since.

      I love you and you are where half of my strength comes from!

      I totally agree that it’s hard to understand and getting rid of the ‘chronic fatigue’ label is SO important. We have always agreed that tiredness is the easiest thing I have to cope with, it’s just the icing on a pretty shitty cake!!

      Again, I love you x

      Like

  3. Thank you so much for sharing your story. I’m so sorry that you weren’t believed for so long, that must have been so difficult. I have read bits and bobs about ME before but this is by far the most detailed and honest account that I’ve read. I wish you all the best with your recovery from your relapse, you’re such an inspiration.
    Hayley x
    Lifethroughtsg.com

    Liked by 1 person

  4. Madi Baulch

    This post is amazing! I’m sorry for what you have and are going through! I have Crohn’s disease so I understand a little bit of what you’re going through but at the same time could never understand (if that makes sense). I’ve found it helps me to talk about my illness on my blog, so I hope writing this was therapeutic in some way.
    Sending you love x

    Liked by 1 person

    • Thank you so so much, that honestly means a lot, especially from another chronic illness fighter! I find it comforting to write about these experiences but then get even more out of sharing my story when it introduces me to people like yourself who also have to cope with disease! It truly means so much that you messaged and I’m about to head on over to your site to read your story!

      Sending hugs x

      Like

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