Normality

Like yourself I can't function properly for a full week (except when I got a honey bee sting - I felt completely healthy and energetic for a full month) - there always needs to be days of rest in between. Sometimes the rest days fall on the weekend, but often it's mid-week, so I feel this can't continue for very long. And if I don't actually crash, mere lack of sleep and accumulation of sleepless nights force me to stay home every now and then.

I hope to get an appointment with an infection specialist soon - those who have received immunoglobulins say they are the most effective treatment for ME/CFS, but the treatment very very expensive... Anyway I believe affordable treatment will be available some day.

Firstly I want to reasure you that I do know people who lead a relatively normal life. Unfortunately the whole family of illnesses (FMS, CFS, ME etc) are for life. There are coping strategies that you can learn so that you can create a new life.

After first being diagnosed I felt that my life was over. Of course this wasn't the case. Everyone who has that will to survive will adapt. Please don't misunderstand me I am not saying you will necessarily lead the life you used to but you will be able to have one.

At the moment it will probably seem incredibly daunting. As you can see by the mirriad of responses to your post you are not alone. There are many people around with one or more illnesses from this family who remember what it's like at the beginning.

Try starting off small. Pick a task you want to accomplish and break that down into smaller components. After each component is completed decide whether you can go on and do the next part. E.g. Washing up can be broken down into the individual items that need washing or larger sections such as type of item (mugs etc). It goes without saying that the bigger the task the longer it will take to complete. SO BE PATIENT WITH YOURSELF. LOL.

Give yourself permission to rest. You are not going to be able to keep going all day. You do need to rest, and I mean rest. I often made the mistake of thinking that because I was sat down I was resting. In truth I would be doing something else, mentally or physically. This doesn't let your nervous system have a break.

Try to make sure you do something nice for yourself every day. Even if its as simple as listening to some of your favourite music. When you don't you will probably find that you become deflated. The better your mental state the better equipped to deal with your symptoms.

I do hope this has been of some use. Learning to live with any condition is difficult but remember to turn to your support network when you need to. There is never any shame in asking for help when you need it.

Take care of yourself.

Helen

xx