‘What’s Living with M.E. Actually Like?’ | Huffington Post blog | 12 May 2015

From Huffington Post Lifestyle, 12 May 2015.


It’s ME Awareness Week: Here’s What Living With ME Is Actually Like
by KAYLEIGH BELL, freelance writer and copywriter


headshotThis week is ME/CFS Awareness Week, and if there is one thing people like me need more of, it’s some bloody understanding. My life wasn’t always like this. At 16 I caught Glandular Fever and ended up in hospital. It really hit me hard and a full recovery never happened. In hindsight doctors have explained that this is when the ME developed. I went undiagnosed for ten years, struggling through university and into the working world. I was treated for anxiety and depression, and the physical symptoms I suffered were assumed to be manifestations of mental illness.

Finally, last summer, I crashed in a most spectacular way and became completely incapacitated with exhaustion and anxiety. It had been building for months and I had pushed through until one day I came undone. I had no choice but to give up my job and focus all my energy on trying to find out what was wrong with me. Last November, with help from a sympathetic GP, I was finally diagnosed with ME and it felt like a victory. I am slowly learning about my condition and my body’s limits. I feel vindicated from the deep-rooted fears that I am a lesser human being than the people around me.

Not many people know what ME is. Those who have heard of it often explain it as ‘being really tired all the time’. Would you believe me if I told you that over 250,000 people in UK alone suffer from ME? Or that two thirds of those sufferers are female and aged between 20-40 years old?

ME stands for Myalgic Encephalomyelitis, and is also known as Chronic Fatigue Syndrome (CFS). It is a chronic, neurological illness that mainly effects the nervous and immune systems. The symptoms include severely debilitating fatigue, painful joints and muscles, disordered sleep, cognitive impairment, irritable bowel syndrome, hypersensitivity to light and sound, and post-exertional malaise. There’s no known cure, very few treatments and little is known about the causes. Bit of a downer, eh?

Cold, medical language does little to paint a picture of what it’s like to live with ME. I describe it as my body being like a dodgy phone battery. It drains a lot faster than everyone else’s, and even if I charge it multiple times a day it still ends up flat. No amount of sleep feels refreshing and on bad days I ache all over. I feel dizzy and light headed, and struggle to even focus on watching TV. As a bookworm and freelance writer one of the most devastating effects on my life has been my inability to concentrate. My short-term memory is worse than your Nan’s after a few brandies. It’s a battle to pick even a commonplace word out of the alphabet spaghetti soup inside my brain.

It is soul destroying to have the drive and skills to achieve your goals but your body is holding you back. I’ve always been hard-working and ambitious, but I spent many years without a diagnosis convinced I was lazy, weak and batshit crazy. Don’t get me wrong, my mental health issues are very real in their own right, but I was never able to get a proper grip on them because of the physical condition going unaddressed.

Some days the guilt is crippling. I feel like I’m a burden to my loved ones and not contributing anything to the world. I can see my life and my youth wasting away as I sit useless on the sofa. People comment on how it must be nice to not work. I have to resist the urge to cause them an injury. Enduring ME is mind-numbingly, scratch-out-your-eyes, scream-into-pillow boring. Having an ‘invisible’ illness means that even those closest to me often struggle to accept that I’m too exhausted to get out of bed some days.

These days I’m best mates with my dog. I don’t get out much and try to reserve my energy to go to yoga classes a couple of times a week. I’m very aware that even my limited amount of activity is a luxury that many ME sufferers can only dream of. Every case of ME is different; no two people have the same experience. Some people recover completely, others deteriorate consistently, but most dance back and forth with relapses and periods of improvement for their whole lives.

In true British fashion usually ‘I don’t like to make a fuss’. Nothing kills a conversation quicker than when you respond to ‘how are you’ with ‘physically and emotionally drained due to my chronic illness’. I’m positive about the future because the alternative is unthinkable. I have to believe that I’m going to get better and this is illness is just a hiatus from my twenties. In the meantime what would really make my life, and the life of others with ME, a lot easier would be greater public awareness of the illness.

3 thoughts on “‘What’s Living with M.E. Actually Like?’ | Huffington Post blog | 12 May 2015”

  1. Very eloquently written, I hope you will recover enough to follow your dreams, I have had the ME for 24 years, very severely for 5 years. Now moderately affected. My 23 year old daughter was diagnosed with ME age 11 and had a .year off school,. She has had ups and downs since then, but has recently completed an access course to go to university. She will need a lot of support to do this and I have to find the energy to help her with cooking etc.Its very hard to feel unwell most of the time and not have the energy to do anything but the basics and still try to keep positive. I have to for her sake, because I believe she will improve and have a life.She deserves it, as do the other countless hidden people affected by this cruel disease.

  2. This really made me LOL, which was much needed! I’m so sick of reading stuff about “learning to live with it” and “I’ve had it my whole life”. It makes me feel worse! It was so lovely to hear someone say that they stay positive it will go away.

  3. Hi,

    Am not sure how to post to your site but have something to offer.

    I have probably suffered from cfs since i was an early teen maybe even younger.

    I am now 54 years old so the first symptoms began when i was 8 years old when i could not sleep because of might be called restless leg syndrome. At the time the only relief my mother found was moving me back and forth into hot and cold baths.

    Long story short i was sent to boarding school at 8 years old with an Iq way in excess of 185, i however made my way through school fast asleep in most classes where i would not be caned.

    There was never any intervention only punishment but i managed to leave school study law and computer science, again sleeping through most of the lectures.

    At the same time i got involved in recreational drugs which i used heavily for many years despite becoming very successful in the restaurant industry working 20 hours per day, 7 days per week.

    I opened many restaurants in SA then moved to London worked with some of the world famous chefs and within 10 months of landing opened my first of three restaurants.

    I also became the youngest Scuba diving instructor at the time.

    Again i pushed myself to the limit but in the last few years, 8/9/ and 10 i started collapsing and being debilitated for up to 14 days at a time, this is an extreme case, some come and go in less time.

    I eventually sold the last restaurant in London and moved to Thailand to build my strength, also very heartbroken.

    After 1 year i moved to Cape town, South Africa investing in a property boom and made millions.

    I also invested in factories in Vietnam and became one of the biggest suppliers of patio furniture in the world.

    I would travel the country and the world exhibiting my products and again made millions, not one year did we not grow by 100% but after the adrenaline of each expo the cfs would kick in with violence.

    My symptoms were as follows:

    Panic attacks non stop
    The feeling of a nervous breakdown at any given moment
    The feeling of having a heart attack at any moment
    The craving for sleep but completely unable to keep my eyes closed
    Sweats so bad i was changing shirts every 3 minutes completely saturated
    Non stop shaking with fever
    Unable to read or focus
    Unable to watch tv
    Repetitively going for a pee every 5 minutes
    Tinnitus
    Loss of balance.
    Inability to eat, i would lose 15kg each episode.

    I had no support system and couldn’t ask for help.

    The only resolution was vitamins and sleeping pills.

    I also drank wine when i could and had a few cigarettes. The worst possible combination.

    This lasted 20 years about 10 times per annum.

    I eventually lost R100 million to Walmart my biggest client and went from driving a brand new Porsche to sleeping in the park with my dog and a bag of clothes.

    I have eventually got back on my feet despite many hardships and bouts of cfs along the way, bearing in mind everything was my fault.

    No exercise
    Smoking
    Drinking
    Terrible diet

    I am now a great success and once again a millionaire but have no need for any of it so i work as a life coach and counselor.

    Up until early this year i had 2 medium bouts of cfs managed to lie down for 30 mins, work for 30 mins.

    But despite my long and boring background i have had a revelation.

    I am very in touch with my body and my mind, i have not looked after myself in any way other than being a full contact karate instructor when i was younger which has probably saved my life.

    Recently i was very bored despite working 20 hours per day and being addicted to sleeping pills i would wake in the morning, deal with my business and mails, drink a few glasses of wine smoke 5 cigarettes and take half a sleeping pill with the phone off.

    This went on for weeks until i found myself in the most expensive rehab and no recollection of how i got there.

    I was supposed to stay for 28 days but the catch was it was so expensive and my business had come to a halt i had to leave after 9 days feeling great.

    Got home and in a very short space of time became worse, drinking more, taking pills more often, trying to ignore life, all the while running many businesses while barely campus mentus.

    Now the strangest thing has happened, i am taking vitamins a few days a week, an antidepressant every day, DRINKING DOUBLE, 3 BOTTLES OF WINE A DAT, 2 BOXES OF CIGARETTES EVERY DAY, TAKING HALF AND QUARTER SLEEPING PILLS ⅔ TIMES A DAY EXCLUDING MY NIGHTLY DOSE.

    I am not really eating, BUT, I AM EATING AS MANY AS 20 APPLES PER DAY!!!!!

    EVERYTIME I HAVE A GLASS OF WINE OR A CIGARETTE I HAVE AN APPLE.

    I have not been sick for months

    i have endless energy and have even opened another franchise of 100 restaurants, fallen in love and feel happy for the first time in 10 years, despite being an addict i know.

    The only drastic change i have made in 20 years is eating 20 apples a day and falling in love.

    I have now reduced the intake of all my vices and naturally feel even better.

    I don’t know if anyone will ever read this, pay attention or just delete it but my details are below, i am not a nutter, i have become famous for counseling addicts and depression which of course will sound like a contradiction of terms and hypocrasy.

    I do know however how blessed i am compared to so many sufferers who live with this daily, and my heart bleeds for you.

    All i can say as a layman that there is a cure or at least a treatment for every ailment. We just don’t have all the recipes all the time, so keep trying, one day something or someone will make a difference in your life.

    God Bless.

    Regards.

    Mike Whalley

    Cell.: +27 82 3597470
    Fax to Mail: +27 86 5476045
    Email: mike115@me.com
    Skype: mike115

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