Breaking the cycle: an overview of self-help
The above mentioned model (see: Understanding Fatigue - Towards a model of CFS) of Chronic Fatigue Syndrome is based on typical cases. No-one, of course, is typical. However from this model a way of managing the illness has been derived which pays particular attention to the factors that keep the condition going. By working on these it has been demonstrated beyond reasonable doubt that substantial improvement can be achieved.
Remember what we said about heart disease. First there are the bare physical facts of the condition, secondly there is how this makes us feel emotionally, what we believe is going on and how we believe we can best manage it. Thirdly there is what we actually do about it. The last two factors are within our control to a great extent. Changing them can change the course of most illnesses. Let us see how we can change them to help with CFS.
An Overview of Self Help
As should be obvious from the above, one of the key factors which seems to be keeping up the level of disability in CFS whatever else may be going on is the symptom lead pattern of activity and rest. Although no two sufferers are alike, all of them will have some disturbance of activity, rest and sleep. How can this be changed?
By becoming aware of it
Try recording your activity, rest and sleep for a couple of weeks. This will be your starting place. By recording exactly how much you're doing at the moment you can then begin to introduce gradual change based on your current levels of activity. There should be no abrupt changes of activity levels. Indeed, initially you may even step down what you are doing.
Making activity and rest consistent
Once you have calculated how much activity and rest you are having currently, the next step is to "spread" that amount evenly throughout the day, so that you break the cycle of doing to much on one day, too little on another. Your initial targets for consistency will be set low enough, by yourself, that you feel you could keep up your agreed level even on a bad day. Equally you won't exceed them on a good day. This will do two things:
(1) Give you back control. For the first time in a long time, you will be deciding when you are active and when you rest, not your symptoms. Breaking the link between symptoms and what you do will be initially difficult, but it will be the first step in taking control over your life again.
(2) Give you a foundation to build on. Once you have established consistency and control, you can, gradually and at your own pace, begin to build on it. That is the next step.
Gradual Increase or Decrease
As we saw in looking at the graphs, people loose their ability to do things over the course of CFS. Attempting to resume previous activities only leads to symptoms getting worse, so they are dropped again. However this can be overcome. Using consistency as your basis you can gradually re-introduce more activity.
Again consistency will be the key. Introduce a slight increase in activity; keep it up till it gets easier, then move up again. This way your symptoms will never get so bad that they will stop you from improving. Small, consistent steps are the key. There is no sudden cure in CFS. You will improve by small degrees over a period of time, pushing the red line gradually back up again.
or you may have to decrease some of your activities, gradually introduce rest in some areas of our life.
Improving your sleep
In conjunction with the above you will gradually improve you sleep, again in small achievable steps. You will be given "handy hints" for helping you to sleep better.
Setting goals and problem solving
So that you have a sense of where you are working towards, you will set long terms goals and be helped to break them down into small achievable steps to reach them.
Overcoming fear, frustration and hopelessness
Often people become demoralized and hopeless in long term illness. Even if they see some initial change, it may be so slight and at such cost that they give up. They may feel that they are doing themselves harm. You will be given practical hints on how to overcome such feelings, or at least to put them aside for long enough to see if it is worth continuing with the self help.
There are some side effects associated with the treatment of CSF. These may include the following:
You will experience an initial increase in symptoms. This is natural, as in being consistent you will be being active when you don't feel like it. You will get more muscle ache, more fatigue etc. Remember - this is the bodies normal response, it does not mean a relapse of your illness. Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most.
You may not feel any better for some time. It is not uncommon for people with CFS, who take this approach, to find that they can gradually do more and more without feeling any worse. However they don't necessarily feel better. But they can do more. Symptoms in CFS often go very slowly.
You may get frustrated with your lack of progress. People don't get better overnight with this approach. It is often hard work. After all, you will basically be rehabilitating yourself from a major illness. Progress that happens in small steps can often appear like no progress at all. It will help you to a) not expect too much too soon and b) to keep a record from the beginning so that you can see progress, even if you can't feel it at first.
Author: Vincent Deary