My heart sank when I went online this week. I saw that some new research about chronic fatigue syndrome (CFS) had been released, with one headline saying that “fear of exercise exacerbates CFS”. Researchers claim that a fear of exercise worsens the disorder – which is also known as ME – and sufferers need to try and get out of bed if they want to get better.
I just wanted to cry. It has taken me 18 months of fighting to get people to believe that what I am suffering is real and not simply made up, or laziness. Some still don’t. I’ve been told that I need to get a grip, make an effort, stop being lazy, that it’s all in my head. I have even been told that “it would be better for people if you were dead”. CFS is still a mystery to the medical world. It’s never really spoken of, and so people don’t understand what it’s like to have your life changed so dramatically.
Eighteen months ago I was “normal”. I worked 40+ hours a week, volunteered in my spare time for a bereavement charity, went to watch football, socialised, and was always on the go. Almost overnight that all changed. I can no longer work. In fact, I am rarely able to leave the house, and spend up to 23 hours a day in bed. I have seen the world I know and love crumble around me; my family have become my carers; my relationship has suffered; and I have lost my connection to friends and the outside world, becoming a recluse.
I can’t truly explain what it is like to live with CFS, and symptoms differ from person to person. But try to cast your mind back to the last time you were really ill. I don’t mean a cough or a cold, I mean full-blown flu. Do you remember how awful you felt? Your whole body aching so badly that even a few steps to the bathroom felt like a marathon. You feel like you could sleep for a week, but feel too ill to drift off. Your head feels so foggy you cannot think straight. You are dizzy, weak and light-headed when you try to stand up or walk. You have double vision and headaches, and any noises feel so intolerable it’s like someone scraping their nails down a blackboard. Not to mention the effects on your digestive system. Could you have carried on as normal? How would you feel if people told you to that “it’s all in your head”.
Remember how good it felt when you started feeling better and could get back to normal again? Now imagine it doesn’t get better. That has become my reality. Do I enjoy living like this? Do I want to live in my bed and lose everything I loved? Not a chance. I dream of getting back to being the person I used to be. I am 43 years old and a mess. I feel like I have lost my identity, my independence and at times my dignity. I’m scared that this is as good as it gets. Some days do feel better than others, and I get a glimpse of hope. So I try to catch up, have a bath, change my sheets, do some cooking. But boy does my body rebel, and the next few days are even worse. This isn’t living, it’s merely existing.
I see so many TV adverts bombard us with remedies for flu. People take feeling ill seriously and want to feel better. I don’t see these adverts telling people to man up and get over it. So much money is put into researching a cure for colds and flu, but so little is done for CFS sufferers. Around 250,000 people in the UK have the condition, and those figures represent only those whose symptoms are so severe they have sought medical help. In this respect, I feel lucky. I know there are many out there who suffer far more severely than I. Unlike other illnesses I don’t usually look ill. If anything, the weight I have gained and my dishevelled look only goes to feed people’s perceptions of laziness. I try to hide how I am feeling. I don’t want to be a victim, or to be pitied. I just want to be believed and taken seriously.
Am I fearful of exercising? Yes, if I am honest. But it’s not that I am afraid of doing the exercises: I WANT to be able to walk and to go shopping. But I also know the physical suffering I feel after pushing myself too hard. It’s hard not to be afraid of feeling so ill that you can’t raise your head off the pillow for days on end. Reports like those seen this week do nothing other than belittle the battle we go through every day, and make people question us and our commitment to getting better.
Best thing imo is not to read the stupid papers, listen to others and keep your own counsel. Nobody, absolutely nobody understands, can empathise or even begin to know what this illness does to us unless they have it, and then there are different levels of severity and people can suffer differently. Let go of what the media portray, let go of trying to explain and put what energy you have into trying to live your life as best as you can. this may sound simple, but I often need to be reminded.
Good luck in your journey with this M.E and I really hope things improve for you. Just don’t give up and don’t allow such media rubbish affect you.