Graded Exercise Therapy for ME/CFS – A Personal Experience
I’m standing in the middle of a sports shop for the first time in years, trying on running trainers. Because I am nothing if not predictable when it comes to shoe taste and fashion, I reach across and pick up a pair of black and rainbow coloured triathlon shoes. I’ve fallen in love. This is the pair of shoes that will cure me.
You see, to rewind a little bit, the ME specialist in the UK has told me that if I rebuild my fitness by doing a couch to 5K programme, I will be cured of ME. I have heard rumblings that Graded Exercise Therapy doesn’t cure many people. I also know how my body feels after exercise of any type. Still, I’m willing to give it a try. After all, what harm can a little running do? I used to be an athlete, competing nationally and training twice a day. I love sports, and I’m looking forward to running.
After buying the shoes, my boyfriend and I take the tram home. The whole way, I am cuddling the shoes. I’d love to take them out for the first run today, but after leaving the house, I am exhausted. My day to life consists of the short walk to Albert Heijn (a supermarket) and taking care of myself. The rest of my time is spent being sick – it’s hard to explain what that entails. Still, rest assured, it is very time-consuming, and unfortunately, my body is very good at focusing on it!
A couple of days after the shoe excursion, I feel like it’s time to go for the first run. Excitedly, I pull on my old training kit and my new running shoes. As I leave the house, I walk until I am out of sight of the city. Thankfully, I live close to a very quiet park. I don’t want people to see how unfit I am. My fitness used to be a great source of pride, and quite frankly, I am embarrassed about how unfit I actually am now.
But once I am out of sight, I start running. The first week of the Couch to 5K starts with a simple 1-minute running, 1-minute walking, ten times. Except it is not simple for me. After one minute, I can feel my chest burning, and my legs are jelly. I can’t start running after a minute of rest, so I make it two minutes. I manage four of these before there is nothing in me, and my head feels like it is repeatedly being hit with lightning bolts. So I decide to call it a day. After all, I’m unfit; it’s normal to struggle on the first day.
The next two days, my normal migraine intensifies, and I am stuck in bed. Luckily, on the third day, I feel well enough to leave the bed. Not really to run. But I want to be cured, so I’ve got to follow the programme. I try again. And again, in run two, the same thing happens. I don’t get any further.
But the doctor has said it’s normal to feel side effects from regaining your fitness. Anything beyond side effects must be me telling myself I am sick. At least that’s what the specialists’ philosophy was. So I keep trying. And the same thing happens again on run three. I don’t get any further.
The idea behind the Couch to 5K programme is that you should stay on the week you are on until you can complete it comfortably. But I haven’t even made week one yet. And I keep trying for two or three months. But I start to notice that it takes longer and longer between each run, because I am stuck in bed, and if I stand up, I get dizzy and feel faint. So I have to stay in bed.
The more I run, the sicker I am getting. I have gone from small walks to the supermarket to needing my housemates to do groceries for me. And as I run more, never quite completing week one of the programme, I start to struggle with basic things like cooking for myself. I am incredibly lucky that my boyfriend and housemates step up and help me cook dinner. But as I start getting worse and worse, not better and better as I was promised, I start to feel more and more guilty about how much of a burden I am on my housemates.
The thing is, they are lovely and kind and generous and would never complain. But I am very aware of how much extra work I am making for them. And they are all 21, just graduated from university, and struggling enough trying to figure out what they are doing with their lives, what careers they want and how to find meaning without the structure of uni. They don’t need a sick friend absorbing all their energy.
At some point, I am too sick to run anymore. And I don’t want to either. Whatever the doctor says, I can feel how much it’s affecting my body. When I started, I was in the process of applying to part-time jobs, and now I’ve got to the point where I have to make a decision no one wants to make. I have to move back in with my parents, in another country, in a tiny village, away from all my friends. Because I, a 21-year-old, cannot care for my basic needs.
Back home, in my childhood room, living with my parents, I can get the rest that I so desperately need. I don’t need to worry about money, I’m not paying rent, they will cook for me, shop for me and do my laundry. So I slowly start to recuperate, I can open the curtains more often, and I can even cook for myself again occasionally.
I am well enough to start scrolling through my phone, and I start to read up about graded exercise therapy. I see other people’s experiences and realise that I am not alone. Thousands of people have been recommended graded exercise therapy, gotten a lot sicker, and then blamed themselves for not trying hard enough.
As I start to look into the science of it, I realise how badly made the study was that “proved” graded exercise therapy worked. I learnt about the politics, the court cases and the death threats involved in the campaign to stop the NHS recommending graded exercise therapy.
As I read into this, I started to realise that I could no longer just blindly trust doctors. If I wanted any chance at recovery, or even just a better quality of life, I would need to actively read the research myself. But the scientific words, the dense papers and the sheer amount of studies are exhausting for someone with ME. So there is no happy ending. I’m left without trustworthy medical support and not enough brain power to read up on it myself. That and a pair of very pretty trainers that I can never run in again.
Part 1 of how I got prescribed Graded Exercise Therapy for ME/CFS can be found here.
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