How I would explain M.E.

For the majority of the time that I have had M.E. I have been unable to explain it to people, this is partly because it is almost never explained to M.E. patients and because of brainfog. Sometimes you have to hear someone explain something to you before you can verbalise it, even if you have been living with it for 8 years! As far I as I can remember this has never happened to me. Once I had a doctor explain M.E. to me in a way which made sense but I was very brainfoggd at the time and can hardly remember it. Over the years I have gradually gained an understanding of my disease. Recently it hit me in the clearest way, which I will try and explain to you.

M.E. involves many symptoms and behaves differently in everyone – but the basic rules are the same. Exertion and or exposure to stimulation/light/noise/sounds and chemicals can cause an adverse response resulting predominantly in fatigue, brainfog and pain, other debilitating symptoms are often present too. In order to reduce the symptoms the person must have complete rest with all stimulation removed. The bodies of people with M.E. are highly sensitive to their surroundings so having the correct temperature, sound, light, adequate food and water are important. Other factors which may affect somebody with M.E. are mould, cleaning products, sensitivity to certain smells, allergies to animal hair, dust, chemicals and pollen etc.

This is where it gets difficult, some people find that their health improves under these conditions, others find it necessary to prevent further symptoms, but cannot gain improvements. Sometimes M.E. seems to get worse or better out of the blue, and that cannot be explained. Research is beginning to show that there are different types of M.E. It is thought some groups respond better to total rest than others. I will only be writing about the type which responds well to rest, as this is how my M.E. has behaved so far.

In a nut shell, a normal person gains stamina from working hard and training, but a person with M.E. gains stamina from rest. Pushing through will only result in fatigue and an increase in other symptoms. It is a lot more complicated to carry this out in practice, in reality people with M.E. must do things to keep themselves occupied and content. Finding the right balance between resting and activity is the eternal struggle of an M.E. patient!

It can take many years to gain progress from regular periods of total rest. In the past it has taken me yeas to get from almost bedbound to playing badminton once a week and walking 3 miles a day. Unfortunately I threw it all away by deciding to go to university and doing a little too much each day until I relapsed, now I spend the majority of my time in bed, working back up from scratch again. I sincerely hope that my body responds as well to rest as it did the last time around. It is never guaranteed that it will behave the same way years later.

Is there anything that you would like to add? I know that I have left a lot of details out. How would you explain M.E?