This month we have been sharing patient and carer stories about Myalgic Encephalomyelitis (ME) and exercise. It is upsetting to hear how the current national clinical guidelines for Graded Exercise Therapy (GET) have caused reduction in function, rather than improvement. In some cases patients are left in such extreme situations it is emotionally shocking to read. Once people with ME become severely affected there isn’t an antidote available to counteract this. This is Lee and Rebecca’s story:
My wife Rebecca had been ill for ages. She did not find out what was physically wrong until she had our son and he turned one. Everything was put down to mental illnesses. Even when she could not get of bed, suffered paralysis, had intense headaches everyday, began vomiting everyday and having the runs every day, caught everything going around and then taking ages to shake it off. Even though a cold would always lead to sinus infection that turned into a stomach infection and often a chest infection. Even though she was in such physical pain and always had swollen glands and swollen joints and she’d be so weak and tired the day after, or 2 days after, doing something active that she could not move for days, then weeks, then months and now it’s years.
Rebecca was always pushed hard by everyone to exercise and be active and take care of her own needs and not lay around, but after her collapse in her mums stairs that landed her in hospital, everyone stopped pushing.
All but her doctor, he diagnosed her ME and told her if she did graded exercise therapy and Cognitive Behavioural Therapy (CBT) for 6 months she’d recover.
She believed him because she knew nothing about ME. This took her from housebound/ predominantly bedbound to fully bedbound. We know now those treatments are dangerous for a person like my wife, but we didn’t know this until she found the 25% ME group on Facebook. By then it was too late and she was totally bedridden and paralysed from the neck down not including arms. The attitude that she must push and push stayed with her and she fights against it still. I see it everyday. She does so much more than she should. She types until her hands and fingers swell and her forearms bruise from being on the home made supports we gave her to use now she has not use of her arms either.
These doctors reduced my wife to a face and hands with no voice and light and no sound or touch.
Now she is trapped in her body and in a dark room that must be kept as near silent as possible with as little movement as possible around her and as few synthetic chemicals and strong smells as possible. If her senses are over stimulated or she does too much physically (or even mentally) it leads to intense symptoms including very intense full body cramps.
Right now she has pneumonia for the second time in 9 months plus a sinus infection, a stomach bug, a post viral infection that behaves like glandular fever which is the illness that started most of this. She’s incontinent, she’s trapped down stairs on a rock hard sofa getting even more pressure sores because social services won’t fit a stair lift due to the layout of our stairs and shape of staircase. We discovered you can rent the kind we need to there is a large installation fee and the rental fees are high.
She had an eidetic memory and tested as a genius on IQ tests before she got so sick, now she can barely speak a sentence when she has her voice (unless it’s a good day) and she forgets our address and even our son’s name for hours, she forgets how to speak and has to think about every word and gets very stuck.
She fits and shakes so violently that sometimes I have to hold her as still as I can which is agony for her. Just being touched lightly is agony for her. She has been unable to use bath or shower for almost 3 years. She cannot have a hug or a kiss, she can’t hold our boy when he cries which I know kills her.
She always said if she couldn’t fight to improve there was no point in living and now she can’t fight to improve anymore. I do believe she has given up and I can’t blame her with what she endures but I can’t lose her and neither can our son. Everyday she’s thinking of ways to help and support her friends and family and beating herself up so badly that she can’t do more. I need to get her up those stairs, I need to get her back on her treatment regime, I need to see her fight to improve again and it’s all going to cost A LOT!
Now she can only move her fingers and face. Could you live that way? She screams and cries most days but she still puts a brave face on it. She still makes me laugh everyday even if it’s just funny faces or sending me things on Facebook and she uses her talent as a writer to raise awareness for her diseases and conditions and to let others like her feel they have a voice and show them they are not alone.
Missing More is a series of posts sharing patient experiences of ME and exercise.
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. We must get current clinical guidelines changed!
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This post is edited with permission from Lee’s content on their Facebook group www.facebook.com/groups/773961869440493/