I am in no doubt that this post will be a controversial one. It’s a post which risks a lot; it could be misunderstood. But it’s a post I feel I need to write. Before I continue I want to make a few things VERY clear.
I believe M.E. to be a physical chronic illness. I do not believe it to be all in the mind in any shape or form. I don’t believe it matters what it is called: ME, CFS, SEID, PVFS they are all just names for an illness with a wide range of symptoms no one really knows the cause of. I also do not believe Graded Exercise Therapy (GET) or Cognitive Behaviour Therapy (CBT) is the answer.
So why am I writing this post?
In essence it’s because I believe a form of graded exercise and even positive thinking can be beneficial. I’m not saying it’s a cure, far from it in fact, but I think it can help if done in the right way.
I did Graded Exercise Therapy in the early years of having this illness, and I can safely say the way it was implemented worsened my condition significantly. I trusted the doctors knew how to get me better; if a doctor said exercising would cure me I’d believe them and do it, anything if it meant I could be a normal teenager again. And I did begin a course of GET, that is until the physiotherapist put a stop to it as they saw my physical symptoms worsening. The exercise prescribed was too much; like running a marathon you haven’t trained for.
Now that form of Graded Exercise Therapy certainly isn’t beneficial for people with this illness.
However done in a different way I think graded exercise can be helpful, if not in aiding a full recovery, in aiding a partial one. I don’t shy away from exercise, but what I class as exercise and what a conventional person would class as exercise are probably two very different things. Exercise can be as basic as a few simple stretches done lying down, getting out of bed, walking to the bathroom, going down the stairs in the morning and back up them at night; it doesn’t have to be a walk round the block every day, or a five mile run.
Jumping straight into a walk round the block can inevitably worsen the symptoms of ME; the body hasn’t got the energy reserves it once had, hence the overwhelming fatigue, pushing through the fatigue to embark on exercise of that nature only serves to worsen symptoms. The trick is to start slowly, and build up gradually.
Starting some basic exercises; stretching, going down the stairs and back up them once a day, whatever seems appropriate, stopping before the overwhelming fatigue hits and sticking to that basic exercise routine for a week or two if no ill effects are had is a form of graded exercise I believe works. If ill effects are felt the level of exercise is dropped down a bit, if the routine can be kept up for two weeks without any ill effects look at increasing it slightly. One day at a time, depending on the symptoms of the day.
There are no set deadlines for completing the exercises, it’s simply a case of listening to the body. Any warning signs that the exercise is too much; for example worsening pain or fatigue, stop and try again the next day perhaps adjusting the routine slightly to make it achievable. Slowly but surely the amount of exercise that can be done builds up – gradually – and doing everyday tasks becomes easier.
A key thing to note is that some, if not all activities can be classed as exercise in some form; particpating in conversation exercises the brain and senses, walking to the bathroom, having a shower, even sitting up can be categorised as exercise with this illness; it all depends on the severity. They all use energy and any physical movement like walking to another room can be classed as exercise. It’s important to remember that; using all the energy in the body doing exercise, like I did when I did GET at the hospital, means there’s no energy for those everyday tasks that have to be done; you have to get to the bathroom somehow and it’s going to take energy!
I also believe positive thinking can be beneficial for people with this illness but again it’s not a cure. A positive mindset and belief that one day things will be better are key to not becoming depressed, entering a cycle of believing doing something will make the symptoms worse. I’ve noticed approaching things with a positive attitude does tend to lead to more positive results; even if the next day is a bad one, approaching an activity or whatever with a positive attitude and open mind leaves me with better memories of the day before.
Not going into an activity or situation believing I’m going to suffer for doing it is a tough habit to break, especially when the chances are the symptoms will worsen after doing it. But there’s no point in writing the story of the next day when we can’t predict the future. Of course there’s every likelihood the symptoms may worsen and the next day will be a bad one, but on the other hand there’s a chance it won’t be as bad as the mind is imagining.
Focusing on the present and not on the future can really help.
So there you have it. A controversial post which risks a lot. I honestly believe graded exercise and positive thinking can help in the management and recovery of this illness whichever name you choose to use for it. Perhaps not in the same way as it is implemented by physicians, and perhaps not in the same way as the research presented in the media suggests but in some forms it can help.