GET is controversial, some ME patients refuse GET as it worsens their condition, some doctors force patients to participate and other professionals, hand out generic exercise plans, a one plan fits all scenario.
As if the patient lying in bed in a darkened room, can be treated in the same manner as a patient who can walk a few steps to the bathroom, or the patient who can manage to leave their home for an hour once a week. Every patient is different, we have different severities of symptoms and we have endured myalgic encephalomyelitis for varying lengths. No two patients are the same, just like any other illness.
To me, Graded Exercise Therapy is walking a tightrope on fragile toes.
When myalgic encephalomyelitis arrived on my couch, the miles of running, the races, the yoga and the horse riding, all vanished before my eyes. But my mind and limbs were trained to exercise, they had pushed through pain in races, steered over jumps, held various yoga poses in sweltering heat. This body was once fit and exercise was once my friend.
In February 2012 without realising, I placed myself on my own version of GET; walking on a treadmill every two days in my home, I started at ten minutes every two days and gradually added one minute every four or five sessions. It was painstakingly slow and I hated it, but a girls gotta do what a girls gotta do.
Then, in April 2012 I met a consultant naively thinking he could help. Instead I was greeted by a generic exercise plan, a plan in which he assumed I was a gym member and assumed I had access to an exercise bike.
Attempting to be diplomatic, I asked if his plan could be amended; explaining the nearest gym was a twenty minute drive from my home and my body wasn’t capable of driving the journey, exercising and then driving home. I rarely drive now and the odd time I do it’s for short distances, my friend myalgic encephalomyelitis and her brain fog clouding up my windscreen.
All exercise has to be completed within my four walls.
He refused to tailor the plan. It was his way or no way. Being a stubborn twig, I walked out his door.
Fast forward four months, when I walked in the door of a different consultant. A doctor who listened, studied the exercise I was doing, questioned my diet, did all the things a doctor is expected to do, before drawing up a specific plan suited to me. When I say plan, I mean we set goals, loosely.
On my first visit we decided to ask myalgic encephalomyelitis politely if she would let me jog thirty seconds along with my walking routine and hoped to increase the jog every thirty seconds once a month.
I was told to be careful, to listen to my body, not to push and pull back if myalgic encephalomyelitis reacted badly at any time. I had run a marathon; this should be easy, right?
It was far from easy and my body crashed over and over during the following months, a record on repeat. So all jogging attempts were shelved and we stepped back to walking, which to me is like climbing Mount Everest with no Sherpa. or Oxygen.
There are weeks when I won’t be well enough to exercise at all and there are days I hit the stop button minutes into my session, and on the days I do exercise, I complete nothing else bar making my meals, my body unable to cope with any additional expenditure. If a visitor calls, or I have a doctor’s appointment, the exercise is shelved, the energy tank not capable of stretching that far, myalgic encephalomyelitis robbing me of my store…