By talking about M.E (alternatively known as Chronic Fatigue Syndrome/CFS) I am being a little indulgent. However, it is because of my illness that I am now writing, so discussing it here isn’t completely inappropriate. I don’t want sympathy, but I would like a little understanding; not just for myself, but also for all the other sufferers out there. I want to educate and offer support.
I’m not going to talk about the causes, as nothing has been medically substantiated. Nor am I going to talk about treatments as there aren’t any absolute ones. Some may debate that fact as there are those that have been cured by various treatments, but what works for one sufferer won’t necessarily work for someone else. I have suffered with this illness for about twenty years and I have my own thoughts on things. One thing is for sure, everyone experiencing this illness does so in their own unique way. The symptoms are different for everyone and there never really seems to be any one obvious, consistant cause.
I got ME after suffering with Glandular Fever in 1996. I managed to work until 2008. During those years I did have quite large periods off due to sickness. What is worse than the actual symptoms is the attitudes of the people you work with. It is difficult for people to understand why you have so much time off just because you’re tired. I actually had one colleague say to me: “We all get tired, but we don’t have two weeks off because of it.” That same person also suggested that my pay slip should be divided up between the rest of the employees. People think you are just lazy and pathetic.
The tiredness you experience with ME can’t be slept off and it isn’t normal tiredness. There are many ways I describe it. It’s like walking in water against the tide; it’s like having weights around your wrists and ankles, because you feel so heavy; it’s like your blood is diluted, you feel so weak. Everything you do takes an enormous amount of effort. Stress becomes impossible to deal with and exacerbates symptoms.
If, like me, your whole nervous system is affected you experience a range of quite alarming symptoms and you can become very anxious. That is what happened to me and why I eventually had to finish work. My anxiety became debilitating and my energy levels were at rock bottom. I literally stopped functioning. It was a tough time giving up work and very much the last resort. I felt like a failure, like perhaps I hadn’t tried hard enough, but that wasn’t the case as I had nothing left to give. I know that the people I worked with just thought I was odd, perhaps a bit of a drama queen, a wimp. You see ME sufferers tend to look so well. The thing is, if they knew how hard it had been for me to be in work and how much effort I had put into each day they would probably have had a lot more respect for me.
As a sufferer you don’t just get to experience these horrible symptoms, you also get to feel like a failure. You have to let people down all the time. You can’t be the person you want to be. You can’t be the wife, daughter or friend that you want to be. You actually lose many friends a you simply can’t cope with a social life.
Like I said before, I’m not telling you this for sympathy. I like to think that anyone who reads this will go away with a better understanding of the condition and how it can affect people.
My life could be a lot worse. Now that I don’t work I am able to pace myself. I have to be careful not to do too much as I am quite a driven and motivated person and like to be as busy as my body will allow. The illness is fluctuating in it’s nature so there are really bad days and not so bad days. I hate being financially dependent on my husband and I wanted to find something that I could do at home to earn some income and so I decided to write. I can do what I can, when I can, if I can.
I find yoga, mindfulness and meditation very helpful tools for dealing with the symptoms.
If you have managed to read to the end of this, well done and I thank you. If you are a sufferer and want to contact me about it, please feel free to do so.
Best wishes
Annabeth
Annabeth Nash 