Recently I've been doubting myself, I feel like a bit of a fraud when talking about my M.E whilst reading stories about people who are far worse than me. People who are bedridden and housebound. I feel confused, how can I have M.E and still run? Why did graded exercise work for me and not others? Why is it that I'm much better now? Did or do I really have M.E if I can have a relatively normal life and if I can go running? All these questions, no matter how irrational, keep on rattling around my mind and I don’t really have any answers for them.
I guess you could call it survivor's guilt, I don't feel like I can be part of the M.E community if I am able to live a relatively normal life whilst others are suffering so much with seemingly no light at the end of the tunnel. I feel guilty talking about my illness and gaining sympathy from others when in reality it's been nothing compared with what others are going through.
Currently there is a big debate about Graded Exercise Therapy (GET). It's a highly divisive subject surrounding M.E. The idea is that you do small amounts of exercise, slowly increasing the volume you do. Not enough to overload the body and exhaust yourself, but enough to try and gradually improve your physical ability. In theory you can then progressively get stronger and better. It's the most accepted way to try and deal with M.E by those who don't necessarily understand the illness. It's what a lot of GPs advise for patients.
It's what I was told I should do when I was at my worst and again years later when I felt like I was relapsing. The first time it proved too much, the latter it worked. The controversy comes in that it's what pretty much every patient is told to do, no matter what stage their M.E is in. For a lot of people attempts at graded exercise have left them feeling even worse.
For me though, second time around it worked. I can credit this controversial technique with my improvement in controlling the illness in recent years. It's something I would have thought incredibly unlikely when I was at my worst. “You have to break the cycle” doctors said “Do something more to lift yourself out of the hole.” It's so much easier said than done and I would be the first to say that at times it's impossible.
To be honest I feel like a bit of a hypocrite to credit it with my recovery. It’s almost like I have gone over to the dark side and that I now stand with all the doctors and sceptics who think that M.E sufferers are just lazy schivers who need to get out of the house, deal with life and get some exercise. I battled people with this attitude for so many years but now what they have suggested for me has worked.
Because of the negativity surrounding this technique and the stories about it making people relapse I have felt I can't really talk about it, but I now feel this isn't right. There has to be a reason why it's suggested as a therapy, it has to work for some people, it has to do some good. If it failed every time, if every patient who tried it regressed back into the clutches of the illness then surely graded exercise would have been banished to the closet of possible M.E treatments.
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| The first pair of running shoes. At this point I was already many years into my recovery, running was the start of the next stage. |
I feel it's wrong to disregard a possible avenue of recovery and to slate it as much as graded exercise has been if it offers some a way out and the chance of a normal life. M.E is a very different illness for all those who experience it, it is impossible to expect one recovery technique to work for all of those sufferers and the vast degrees of differences in their symptoms. Just because it hasn't worked for one person doesn't mean it won't work for another. The recovery process needs to be tailored to the individual, with doctors deciding what techniques to use, on who and at what time.
This makes M.E a very labour intensive illness to try and deal with. It requires time, effort and a lot of support along the way. Rather than just chucking a load of pills at the problem doctors have to take time to know the patient and their particular variant of M.E. They have to understand exactly how it affects that patient, going as far to find out every aspect about their life, their personality and their day to day existence. Only then can they begin to understand what may work and try to adapt recovery techniques for that particular patient. It's a long road to travel down and sadly one which our understaffed, underfunded, time limited doctors surgeries and NHS hospitals cannot cope with.
This makes M.E a very labour intensive illness to try and deal with. It requires time, effort and a lot of support along the way. Rather than just chucking a load of pills at the problem doctors have to take time to know the patient and their particular variant of M.E. They have to understand exactly how it affects that patient, going as far to find out every aspect about their life, their personality and their day to day existence. Only then can they begin to understand what may work and try to adapt recovery techniques for that particular patient. It's a long road to travel down and sadly one which our understaffed, underfunded, time limited doctors surgeries and NHS hospitals cannot cope with.
Graded exercise did work for me but it only worked second time around when I had reached a certain level of recovery anyway. The technique then helped me to climb the next few steps and it continues to help me get higher up the mountain of recovery. Whether it will help me get to the summit I don't know but at this moment in time it's helping me keep my head above the clouds.
But just because it worked for me doesn't mean it will work for everyone. When I was at my worst I just didn't have the energy to do more. Every time I tried it seemed to set me back. People would constantly tell me that I had to break the cycle and do a bit more each day, as if it was something I could just do. As if I could just decide I no longer wanted to be tired. Each time I tried though I felt like I would break again, one step forward and two back. It would take me weeks to build up to the confidence and the energy to start from scratch again.
But just because it worked for me doesn't mean it will work for everyone. When I was at my worst I just didn't have the energy to do more. Every time I tried it seemed to set me back. People would constantly tell me that I had to break the cycle and do a bit more each day, as if it was something I could just do. As if I could just decide I no longer wanted to be tired. Each time I tried though I felt like I would break again, one step forward and two back. It would take me weeks to build up to the confidence and the energy to start from scratch again.
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| When I was really ill first time around, Graded exercise proved too much for me, it just didn't work |
I believe that to benefit from graded exercise you must have recovered to a certain extent. I couldn't use this technique when I was really ill it was just too much for me. I had to wait until my body had started to recover from the illness on its own. Only at a certain point of my recovery, when I had enough energy to cope with doing more could this technique begin to work.
The problem with graded exercise and the reason it has gained such a bad reputation is because of its misuse. It is being suggested for patients who are still way too ill and too fatigued to cope with it. The shock of trying this technique is too much for their bodies to cope with leaving many people so much worse off than when they started.
I feel that graded exercise is being marketed in the wrong way. Rather than being sold by doctors as a cure that will help lazy M.E sufferers get back to normal it should really be thought of as a coping tactic, an M.E management strategy for those who have already recovered to a certain extent.
The danger comes when people think that graded exercise is a catalyst for recovery rather than a contributor. This is when it can do more harm than good. It needs to be used appropriately. Our perception of exercise also needs to change for it to work. To start with this isn’t about exercise as we know it, pushing your limits and feeling the burn. This is simply about trying to do a little more. One step is exercise and progress if you couldn’t do anything the day before.
Graded exercise should be seen as a form of rehabilitation, something that can help those people who are already starting to get better. It should be thought of as something similar to physio for someone who has broken a leg. After the initial accident, you need time to heal and let the body recover, however once you have reached a certain point there are things that you can do to help the process along. If the physio is started too early or the patient does too much too soon then the recovery may take longer or the patient could be made worse.
Sadly M.E is not as simple as a broken leg, there are no set recovery times, patients don't have the knowledge that in 4-6 weeks things will start getting back to normal. Unfortunately it seems we are no nearer understanding what causes the illness and as a result we are still some way off finding the cure for it. The golden bullet, the cure to help all M.E sufferers seems like a distant dream. I'm still confused as to what made me ill in the first place and even more confused as to why I started to recover when I did.
Why did my body decide it was going to get stronger again? Why could I suddenly cope with doing more? Was it just that the illness had run its course? If so then why are others still stuck in the seemingly endless downward spiral? Why have I got better when many others are still ill? These are questions that continue to bug me, the questions that people who are doing research into M.E still need to answer.
For now though I believe there is a place for Graded Exercise Therapy but it has to be used appropriately, people in positions of trust need to understand the illness and their patients before they suggest it as a therapy. After all If it can help some of us to get better then it has to be a good thing.
The problem with graded exercise and the reason it has gained such a bad reputation is because of its misuse. It is being suggested for patients who are still way too ill and too fatigued to cope with it. The shock of trying this technique is too much for their bodies to cope with leaving many people so much worse off than when they started.
I feel that graded exercise is being marketed in the wrong way. Rather than being sold by doctors as a cure that will help lazy M.E sufferers get back to normal it should really be thought of as a coping tactic, an M.E management strategy for those who have already recovered to a certain extent.
The danger comes when people think that graded exercise is a catalyst for recovery rather than a contributor. This is when it can do more harm than good. It needs to be used appropriately. Our perception of exercise also needs to change for it to work. To start with this isn’t about exercise as we know it, pushing your limits and feeling the burn. This is simply about trying to do a little more. One step is exercise and progress if you couldn’t do anything the day before.
Graded exercise should be seen as a form of rehabilitation, something that can help those people who are already starting to get better. It should be thought of as something similar to physio for someone who has broken a leg. After the initial accident, you need time to heal and let the body recover, however once you have reached a certain point there are things that you can do to help the process along. If the physio is started too early or the patient does too much too soon then the recovery may take longer or the patient could be made worse.
Sadly M.E is not as simple as a broken leg, there are no set recovery times, patients don't have the knowledge that in 4-6 weeks things will start getting back to normal. Unfortunately it seems we are no nearer understanding what causes the illness and as a result we are still some way off finding the cure for it. The golden bullet, the cure to help all M.E sufferers seems like a distant dream. I'm still confused as to what made me ill in the first place and even more confused as to why I started to recover when I did.
Why did my body decide it was going to get stronger again? Why could I suddenly cope with doing more? Was it just that the illness had run its course? If so then why are others still stuck in the seemingly endless downward spiral? Why have I got better when many others are still ill? These are questions that continue to bug me, the questions that people who are doing research into M.E still need to answer.
For now though I believe there is a place for Graded Exercise Therapy but it has to be used appropriately, people in positions of trust need to understand the illness and their patients before they suggest it as a therapy. After all If it can help some of us to get better then it has to be a good thing.
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| Graded Exercise has got me this far but its been a bloody long road. |
