6. What is it like to have ME?

Some thoughts about having this debilitating neurological illness, which is thought to affect up to 250,000 people in the UK.


So, what’s it like having ME?

Imagine... Imagine being in bed - for weeks, or months, or longer - with the worst flu you’ve ever had. In fact, several times worse than the worst flu you’ve ever had. Imagine your muscles feeling so empty that maybe you can’t swing your legs over the side of the bed to get up, let alone walk. You have to crawl your way to the bathroom. And maybe you need to keep going to the toilet - at one point, I was needing to go to the toilet more than 20 times a day, - and my record was 5 times in 1 hour! And your muscles haven’t even got the energy to hold a book to your face to read. But then, you’ve got such an excruciating headache that you can’t read anyway. And you couldn’t actually take in more than one page at a time. Maybe even only one sentence.

Some people with ME might not be so badly affected. But, as the ME Association says, for a large number, lives are changed drastically - carrying on with work or education can be seriously disrupted or impossible, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.

You can’t bear to have the light on, or the TV. It’s too bright, and it hurts. And the pain hurts. And you feel so sick. You actually don’t know how it’s physically possible to feel so ill and still be alive.

From the Foggy Friends website www.foggyfriends.org : You can’t ever drink alcohol, but you wake up every morning with a hangover. You wake up during the night drenched with sweat, throw off the duvet, wake up an hour later shivering, pull up the duvet, and wake up an hour later drenched with sweat again - all night long. Noise hurts you so much that you can't go to the cinema, pub, church, or any shop or restaurant which plays music. Whenever your neighbour's children are playing in the garden, you have to shut your windows - even if it’s 30 degrees outside!

You walk up one flight of steps, and your heart’s pounding like you’ve just run a 10-mile cross country run - and you have to stand still at the top of the steps for a minute and hold on, because you feel dizzy, and sick, and might be about to faint. You walk into things; you can’t remember what someone’s just said to you; and all you can do is the most basic things you need to be able to survive. If you’re lucky.

Doctors who work with people who have ME, have measured that it can often be more severely debilitating even than having multiple sclerosis, or serious heart disease or strokes, a liver transplant, or end-stage kidney failure - and can make you feel as ill as someone who is having chemotherapy for cancer. One doctor, Daniel Peterson, says, ME is “one of the most disabling diseases he cares for, far exceeding HIV (or AIDS) except for the terminal stages”. Dr Nancy Klimas says that her ME patients are far more ill than her HIV patients, and that if she “had to choose between the two illnesses, at the moment she would rather have HIV than ME”.

You hate being stuck inside the four walls of your home. You can’t even just pop out 5 minutes down the road to the shop, let alone all the things you really want to do - you literally don’t have the energy, you feel too ill. Maybe on a better day, once or twice a week, you can do a bit more - but you still don’t feel well. And you have to depend totally on other people. Maybe a friend will take you to the beach, you walk for 5 minutes, and sit and chat for an hour. Even that is a massive achievement. But even that means you’ll be stuck in bed or on the settee again for the whole of the next day - or two.

From the CFS Resistance website: There are never days where I feel 100% well, no matter if I manage to go out and about or not. Some days I only manage to raise my head and look out the window. Other days I have fits and can’t remember what day of the week it is. On the days in-between I try and make the most of my life and keep smiling and being silly no matter what happens!

Every time the weather changes, your body just completely gives up working for a few days. Every few weeks, you feel like you’ve come down with another sickness bug or sore throat or something. You’re never sure if it’s that - or if the ME has got a bit worse - or if you’ve done too much.

“I urge the clock to mark each lonely hour faster than the one before.”

You can’t sit in a car that’s got one of those horrible air fresheners in it. You can’t go into a room where someone’s been smoking. If you’ve got a food intolerance, you can’t have even a single crumb of that food in a restaurant without it throwing you back into bed for days.

ME is far more than just fatigue or being tired. As the author Laura Hillenbrand has said, “It's an absurd mischaracterisation. This illness is to fatigue, what a nuclear bomb is to a match.” And saying that ME is “just being overly tired” is like saying Alzheimer’s Disease is when someone is “just a bit forgetful”. It is impossible to live or survive in the ‘real world’ with ME. Just trying to function with daily tasks is an ongoing challenge. ME can affect every system of the body - walking, talking, eating, breathing, and thinking.

When you get too over-tired, you suddenly just snap, you feel really frustrated for no reason at all, and even when your best friend says something to you, you just want them to shut up and you just want to sleep. But then your mind is racing away, full of thoughts that you’re too tired to think about, like an engine that’s revving at full throttle but stuck in neutral and not going anywhere. You sleep all the time, but you still don’t feel any better when you wake up. You hope the nightmare will end every time you wake up. But it doesn’t. Sometimes you wish you wouldn’t wake up - but hang in there, hang in there.

You feel a huge, profound sense of loss when you have ME. You might have lost your career, your work, school or university. Obviously your health, and your stamina. Even your day-to-day activities. Your hobbies. Being spontaneous - you have to plan everything in advance with how much energy you think you’re going to have. Although you don’t know how you’re going to feel the next day - or even the next month. Income and financial security. You lose friends - oh yeah, you lose friends - people who only want to know you if you can go out to play! Relationships. Your future plans. Independence, and confidence. And it’s easy to lose hope.

Imagine ... how devastating it feels, missing out, with your life put “on pause”, while the world carries on without you - and the world seems to choose to just “leave you to it”, on your own.

And from ‘The M.E Song’ by plzsupportme on YouTube youtube.com/plzsupportme : “Don’t rely on your friends, They won’t even notice that you're not OK.”

But if you have ME - you are valuable. It is not your fault you are ill. Be kind to yourself.

Thank you to friends with ME whose thoughts are shared in this video.