Missing More is a series of posts which are linked to today’s #MillionsMissing demonstrations. The theme is that many of the millions missing normal life (due to Myalgic Encephalomyelitis) are missing more unnecessarily after bad advice about exercise.
Here Tanya explains the poignancy of giving up her trainers and the false hope that exercise for ME offered.
Why I’m Giving Up My Trainers #millionsmissing
There was a shop that every local runner talked about, where they were renowned for choosing the exact trainers to suit your feet.
They wouldn’t show you the prices before you tried them on, because they wanted you to decide based on the best feel before you knew the price.
They were the Ollivander Wand Shop of running shoe shops.
The ones I chose weren’t the most beautiful in the shop, but they were the bounciest, happiest shoes my feet had ever known. Just putting them on made me want to go for a run.
It’s ten years since I bought those shoes. Because of my ME, my mobility slowly worsening each year, I haven’t been able to run for almost nine years, but I’ve kept them, dragged them from house to house. I couldn’t bring myself to throw them away.
Sometimes I dream I am running again.
In the early days of my mobility being affected, I thought it would be temporary. So many well-meaning people told me that ‘everyone gets better from ME’, and gave me some suggestions of lightning-quick therapies that would soon restore me to normal.
Over the years, I’ve discovered that I’m not the only one to remain stubbornly un-cured. The most severely affected aren’t seen – sometimes even by doctors. In the early days, I was told that if I exercised gradually and steadily, ignoring any symptoms, the exercise would cure me.
That’s what I believed when I bought the trainers. I was running my way back to health. I felt stronger each time. My body was pumped full of endorphins. It was the key to my healing, and I committed to it wholeheartedly, partly because I loved it, and partly because a doctor had told me it would work.
I wanted it to heal me. Instead, the exercise broke me.
I’m not the only one who was made worse by exercise. The ME Association reports 74% of ME patients prescribed graded exercise therapy by the NHS are made worse by it. In my case, I was made permanently disabled by it.
In the UK, the NICE guidelines still prescribe graded exercise therapy as the ‘best’ therapy for ME patients. There are no warnings about the dangers of graded exercise therapy. Despite recent studies showing how exercise can physiologically damage some ME patients, these guidelines remain unchanged.
The years go by, and life for ME sufferers is still difficult: there’s little or no ongoing specialist medical support, and very sick patients are left to fend for themselves; patients are regularly turned down for benefits, denied access for house visits by doctors, accused of school phobia or truancy by teachers, because so many medics don’t believe that ME is an organic disease, and confuse it with stress-related exhaustion. Graded exercise therapy continues to be prescribed; a high percentage of ME patients continue to be damaged.[For Millions Missing and ME Awareness Day today] ME patients are hosting a ‘virtual protest’. Since so many of us who care about this are too ill to protest in person, we are sending our shoes, which will be placed outside in … London and other locations as a visible sign of the millions missing.
As soon as I heard about it, I thought about my trainers. They are the shoes that represent to me so much of what I am missing from my old life – running, independence, freedom – and they also represent the failed ‘cure’ of exercise. They gave me life; they damaged me beyond repair.
Even as I put the trainers aside for packaging, I felt a reluctance to let them go. I remember that day in the shop, trying them on for the first time. They were so bouncy, and I had felt so excited.
I am Tanya Marlow, sick with ME for twenty years, housebound for the last six, one of the millions missing. Because of ME, I miss playing with my son at the park, singing opera arias properly; I miss the freedom of going round to friends’ houses for meals or coffee, I miss walking hand in hand with my husband; I miss my ministry in church.
I miss running.
If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.
Please help us amplify patient voice on this issue. Share on social media using hashtags such as #MillionsMissing #MissingMoreGET #MEAwareness #NICEguidelines #PatientVoice #PatientEngagement #PatientExperience #chronicillness
Don’t forget to email your story to GETpetition@gmail.com!