Sunday, 12 May 2013

May 12th: ME/CFS Awareness day!!

Today is ME/CFS Awareness Day and the first day of ME Awareness Week! This post is to raise awareness about the full spectrum of severity of ME/CFS.

There is a huge difference between the most severely affected and the most mildly affected, as would be expected with most conditions. I fall pretty much exactly in the middle. Sometimes I would be considered mildly affected, whereas at other times (particularly during significant relapses) I am severely affected. This variation is the case for a lot of people whose condition isn't stable, or those who push the boundaries with their illness perhaps a little more than they ought to..!

At the mild end of the spectrum, a sufferer will only have mild symptoms, or may only have symptoms when they have exerted themselves more than normal. They may exhaust quicker than their peers and may have to limit what they do to some extent. Even those that are mildly affected are likely to have to be mindful of their limitations, and they may still be living with constant, unrelenting symptoms. 'Mild' ME/CFS can still be life-changing and very difficult for the sufferers and their families to live with and come to terms with. They also have to live with the fact that their condition could go in either direction, they could improve or they could deteriorate, and the medical profession can't currently predict which is more likely, prevent it or stop the deterioration if it happens.

The very severe end of the spectrum is remarkably different. There are patients who have been bed-bound due to ME/CFS for years or even decades. The suffering is intense and unrelenting. Some cannot tolerate anyone else in the room for longer than a few minutes, and must lie, day after day, alone in darkness. Most are in very severe pain and often this pain cannot be relieved even by the strongest possible pain relief. Often these patients have to be tube fed and need round-the-clock care. Hospital care would make them sicker, as they are often unable to tolerate light or sound or smells or touch; stimulation of any of their senses can cause their condition to deteriorate further, making their symptoms even more severe. Imagine lying in bed, in the dark, day after day, for years on end, with constant severe symptoms, knowing that there was nothing that could be done to improve your situation, and even thinking too much could make your suffering worse. Imagine lying there knowing doctors could do nothing more to help you, yet there wasn't a huge research effort to try to understand how to help you, and others like you. Some sufferers have died from the effects of ME/CFS and others have taken their own lives because they could no longer tolerate the suffering.

25% of ME/CFS sufferers are classed as 'severely affected', i.e. reliant on a wheelchair and either house- or bed-bound. There are 250,000 ME/CFS sufferers in the United Kingdom alone. ME/CFS is a major cause of suffering.

I have spent many a day over the last 3 and half years unable to get out of bed for a vast majority of the day. It's a frightening place to be. It's not like a well-understood illness where you've got the reassurance that if you go into hospital they will be able to treat you and make you better. The only thing you can do is lie there, in silence, in the dark, hoping that your body will be able to fight back and get you back to where you were. There's also the element of blame with CFS, if you end up bed-bound and in agony, with the room spinning, your muscles twitching and cramping, feeling inexplicably sick, you blame yourself for doing too much; your doctors ask you what you had been doing in terms of activity in the days, weeks and months leading up to the relapse, and they too insinuate that if you'd done less this perhaps wouldn't have happened. The truth is that there's no way of knowing.
Please help raise awareness of ME/CFS today- we need there to be interest in CFS, to encourage research, so that the future looks brighter and there is reason for hope. In the meantime, awareness helps us to feel recognised and understood, and reduces the isolation and alienation faced by many sufferers.

1 comment:

  1. Great piece Jess! :)

    I am raising money for ME North East in June by Zip Sliding across the River Tyne! Everyone, please help me raise as much money as possible to help support sufferers of ME/CFS!