GETting Nowhere.

Chronic Fatigue Syndrome (CFS) is one of those strange conditions that has no real treatment protocols assigned to the disease, mainly because so little is known about it, but also because the symptoms are so variable that one treatment won’t work for everyone. Aside from various painkillers, anti-sickness medicines, and sometimes antidepressants, most treatments for CFS aren’t actual medicines. One of these other treatments is Graded Exercise Therapy (GET).

GET is a process where a low level of exercise is performed every day and the level of exercise increases at regular intervals, until the patient is able to undertake normal everyday exercise. This is particularly useful for injuries such as damaged bones, muscles, or tendons and ligaments, allowing the tissue to gradually repair itself and return to its former healthy state. However I have yet to figure out how GET helps CFS sufferers, which is now believed to be an autoimmune neurological disease of the brain and spine. All the same countless CFS sufferers are subjected to GET, myself included.

I started GET in October 2011; at this point the CFS wasn’t particularly bad. I was able to walk, albeit slowly, around most places, and if I rested regularly I was able to live a relatively normal life. The physiotherapist at the local hospital was bubbly and friendly and we had an in depth discussion about my current level of activity, and which symptoms impacted me the most. She then observed me doing a few basic exercises included step-ups and star jumps, and counted how many of each I could perform before reporting a flare up of my symptoms. I was then assigned a certain number of steps, step-ups, and star jumps to do daily, increasing each a little every week. This process ignored one vital factor though; what I could do as a one-off is not the same as what I could manage on a daily basis.

I started the exercises the following day and for the first few days it went swimmingly. The problems started when I had to increase the exercise; my legs burned with every additional step-up and the star jumps repeatedly jarred my back, which was one of my most painful symptoms. We contacted the physiotherapist; I was told to work through the pain barrier. For some strange reason I thought the professionally trained and experienced physiotherapist would know what she was doing and so I stuck to her advice. The pains got worse with each session and I needed more resting periods. The fatigue grew until it felt as though I was wading through treacle with a lead weight tied to my neck. Even the few steps I had to walk became pain-ridden and exhausting. I carried on regardless, sure that one day I would pass through the pain barrier as I had been promised.

A few months later I returned to the physiotherapist far weaker than I had been before. Apparently I just wasn’t trying hard enough. I was advised to buy my own wheelchair but not to become dependent on it, using it minimally. This was the point at which I became skeptical; I hadn’t needed a wheelchair before and now I did, but I was told that the GET wasn’t responsible. However, I was desperate for something to make me better instead of worse and since this appeared to be my only chance, I continued.

A matter of weeks later I had to stop. Just rolling out of bed was an exercise in itself, and the stairs were more like an Olympic sport than a mode of getting around. I needed the wheelchair more and more and more. Despite stopping the GET I continued to get worse for about a year; once on the downward spiral, there was nothing to stop myself from falling even further. I ended up where I am today; able to walk around a small apartment for the most part, but needing my wheelchair for everything else.

At first I blamed myself for what had happened. Maybe if I’d tried harder the outcome would have been different. Maybe I was just weak and pathetic. However, when I look back on this, I consider it to be no coincidence that everything went to pieces when I started GET. It might not be entirely responsible for the outcome, but it was the trigger. My naivety towards some medical professional’s attitudes to CFS didn’t help, nor did my inability to respond to the symptoms quickly enough, but I consider myself to be relatively free of blame. GET certainly has its place in modern medicine, but not to treat CFS, which is just too complex for so simple a treatment.

Author: diaryofadisabledperson

When I was 14, I suffered viral meningitis, and as a result I contracted a disease called Chronic Fatigue Syndrome (CFS), which is sometimes called Myalgic Encephalomyelitis (M.E). Over 7 years on I use a powered wheelchair to get around, and I'm hoping that this blog will give people an insight into life as a disabled person.

2 thoughts on “GETting Nowhere.”

  1. It’s not just you, I tried GET in the hope it would get me from part-time temp work back into my full time job. Instead I ended up completely bedbound for over a year. I’ve not recovered my pre GET ability, though I have managed to stabilise and make small improvements with the Dr Myhill protocols. I just wish I had found Dr Myhill from the beginning and ignored the NHS advice which made me very ill.

    Liked by 1 person

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