Community: Real Life

Living with M.E.


Viks is 24 and from Surrey. She's bed-bound due to Myalgic Encephalopathy (M.E.), but works hard as co-founder of Post Pals, a website community for sick young people.
Entry: 11
Date: 15/05/2009

Viks tells us what a normal day is like for her, giving us an insight into the harsh reality of life with severe M.E.

Living with M.E.

May brings around M.E. Awareness Week. This always takes place on Florence Nightingale's birthday, as it's believed that she became bedbound with M.E. towards the end of her life. She became ill after the Crimean War and stayed inside for years, too tired to take more than one visitor at a time.

In my diary I talk about the big events that have happened, but don't say anything about my day-to-day life. For this entry, I want to tell you more about my daily routines and give you an idea of how tough life with severe M.E can be.

My sleep patterns are a mess. I go to sleep anytime between 10pm and 8am, despite taking medication to help me doze off. I wake up throughout the night, sometimes unable to move. This used to happen all the time and could last for hours; thankfully it's only for short periods now. My bed has a feather topper, a folded double duvet and a soft fleecy blanket, this helps to relieve my pain. I have blackout blind material sealed around the edges of my window and heavy lined curtains to block out the light. Somehow there's always a small amount of light that makes it through, though, and this causes me problems.

Getting up

I 'get up' when my bladder tells me it's time to get up. I crawl to the bathroom via the landing and the light dazzles me. When I go back into the dark I get 'strobe lighting' effects in the corner of my eyes. I climb into bed and switch on the TV. There was a time when I couldn't watch any TV, but now I can if the programme isn't too flashy or  loud. One of my parents brings in some breakfast, which I eat lying down -­ I eat all my meals lying down. I have a mug of green tea to wash down the first seven tablets of the day and watch TV until I feel well enough to put my laptop on.

It's always my intention to get stuck into Post Pals work, but I often end up wasting energy and not getting much done. Some days I read a book for a little while. I have to be careful, though, as it makes me tired if I read too much and I end up with blurry vision for a few days. Sometimes I phone a friend, my grandpa or make Post Pals calls.

"A name doesn't change my day-to-day life. I don't have any option but to get on with it and look to the future."

If I feel up to it, I crawl to the top of the stairs and have a chat with anyone who's around. A few times a week I go downstairs and lie on the sofa with the curtains closed. This was something I couldn't do for years - I once went nine months without going anywhere except the landing. My parents come up and see me throughout the day to give me another 14 tablets. I only get up to go to the bathroom, or to heat up food in the microwave. This is in my bedroom so I cover the display when I'm not using it to block out the light.

My constant pain

I have dinner in bed, but rarely finish it all. Eating causes my stomach to spasm. If I'm bored I watch my stomach spasm away - it's amazing how much it moves by itself. I often vomit when I wake up and it gets worse throughout the day. It used to be so severe it burst the capillaries under my eyes and made me dribble blood. It's annoying when I'm sick over myself because I have to waste energy changing clothes. It's also worn away the enamel on my teeth, and isn't very nice if I'm on the phone or have someone in the room with me.

Later in the day, I go back online and do Post Pal work, read, watch TV and do physiotherapy until I need to go back to sleep. Before bed I take another seven tablets, then listen to my ipod and try to get to sleep.

I'm in constant pain all over my body: my head, muscles, nerves, joints, stomach and back. I'm sensitive to light, noise, touch and smell. I have muscle spasms, twitches, vomiting, pins and needles, dizziness and extreme fatigue.

Doctors often refer to M.E. as 'Chronic Fatigue Syndrome', which annoys a lot of people because it reinforces what many people think - that M.E. is just about being tired. There are over 100 other names for it, but I don't care what it's called (except 'dossers disease'). A name doesn't change my day-to-day life. I don't have any option but to get on with it and look to the future.


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