• Understanding ME/CFS

    We know it's very hard to understand how a person with ME/CFS feels. Even those of us with ME/CFS ourselves can only begin to imagine how family or friends with ME/CFS are feeling on any particular day.

    What makes it all so hard is that people with ME/CFS often LOOK quite well! And they can smile, chat for a while, and even go out.

    Imagine how you would feel if:

    • You got the worst dose of flu you have ever had, and know it could last for 5 or 10 years or more. You are getting over a bad virus, feel totally drained and only have the energy to potter about indoors or lay in bed. You would expect to be better in a week or two, wouldn't you? So did ME/CFS sufferers, but we are still the same years later.

    • You are always too tired and achy to do the things you enjoy, as well as simple things that well people take for granted like popping out to the shop. You feel a bit better for a few days (weeks or months) then it all comes crashing back and you feel worse than before.

    • You can only go out at the most once or twice a week because it tires you out so much, and takes you days to recover from each trip. You wake up every morning feeling just as tired as when you went to bed the night before.

    • You need to go to the toilet but you get half way up the stairs and your legs hurt so much you don't think you can make it. Having a bath or shower exhausts you so much that you're too tired to lift your arm to brush your hair afterwards.

    • It's a great achievement to cook your dinner without burning it, yourself or misreading the instructions.

    • On the rare occasions when you are well enough to go out people assume that you're better, even though you know you'll be ill for days afterwards because of it.

    • You never drank alcohol, but you woke up every morning with a hangover.

    • You wake up in 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 and so on all night long.

    • Noise hurts you so much you couldn't go to the cinema, pub, church or any shop or restaurant which plays music or the houses of any friends who have children. You had to shut your windows whenever your neighbour's children were playing in the garden (even if it was 30 degrees outside!).

    • You didn't dare eat a meal at a restaurant or at a friend's house because you wouldn't know exactly what was in it, and if you accidentally ate even a small amount of one of the dozens of foodstuffs which upsets your stomach you would be awake and in pain all night.

    • Every few weeks, without any warning you were stricken with a mixture of gastric flu and the worst indigestion you ever had and spent the night wondering whether you were going to have a heart attack or just throw up and were shivering so much you couldn't stand up and had to keep crawling to the toilet on all fours. You have random aches and pains all over your body - in your arms, fingers, legs, back and neck. You have frequent headaches.

    • You feel heavy as though extra gravity is pulling you down all the time. You feel dizzy whenever you are standing and constantly sick, and there are no magic pills to make you feel better.

    That's how a ME/CFS sufferer feels every day!