Why I’m Giving Up My Trainers #millionsmissing

Tanya trainersThere 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 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.
 
***
 
Trainers 2

 

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.
 
This year, on the 25th May, worldwide, 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 Washington, 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.
 
Trainers 3
 
How you can help:

  • Protest with on 25th May if you are available (see locations). There’s also a virtual protest option if you can’t be there in person.
  • Lobby your MP for better biomedical (not psychiatric) research into ME, and to change the NICE guidelines, which still advocate Graded Exercise for ME patients, and give no warning of its dangers.
  • Give to ME research – there are several promising leads for treatment (including antivirals and a cancer drug, a Rituximab) but they need millions of investment – and there are very few donating to ME research because it’s not seen as a priority by either the public or the government.

 
My favourite ME charities are:

  • ME Research UK (doing some brilliant studies especially with Dr Julia Newton – probably my favourite research charity)
  • Invest in ME (focusing on the role of the immune system, and including Rituximab trials – UK)
  • The End ME/CFS Project – Open Medicine Foundation. US Charity – I trust Ronald Davis, world-renowned geneticist, to lead this research in promising directions.
  • TYMES Trust (helping young people and children with ME – especially in cases where parents are falsely accused of child abuse because it is assumed that ME can’t be that severe)
  • Change for ME (UK ME Action and campaign)
  • ME Action.net (Worldwide ME action and campaigning charity)
  • ME Association (providing support and advice for UK ME patients)

 
For more information on ME click here. For more information on the problems of Graded Exercise Therapy, click here.
 
Thank you.

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18 Responses to Why I’m Giving Up My Trainers #millionsmissing

  1. Monika Bucher 3rd July, 2016 at 11:31 pm #

    Hi Tanya and all above co-sufferers. I have only just read through these comments and would like to add a bit of my experiences of what helped or didn’t help with my M.E. I know about Caroline Leaf and I have applied her mental detox program 1 1/2 years ago, when I had quite a bad relapse after 2 years of almost no symptoms (have ME since 2006). I do think it can help with our mental stability, but it didn;t make a huge difference.
    My daughter’s former pastor’s wife teaches the Lightning Process in Wellington NZ. My daughter gave me the book, which to me sounded very iffy and I looked him up on the net, especially comments. There was one lady who explained the whole process she went through – pretty scary for ME people! I personally decided against it. It seems some people benefit but I guess there are many who don’t. He’s very secretive about what you actually have to do, so that made me suspicious too.
    I have tried various supplements and also changed to a Paleo type diet, but I do have organic dairy. Dairy free was not good for my teeth! I had 3 little abscesses in the dairy free period, but managed to heal them naturally. Our teeth actually weaken with wrong nutrition and we can remineralize them by eating the right stuff.
    Back to supplements: beginning of this year I came upon Magnesium Malate, having taken a magnesium zinc combo before, I never looked into Magnesium. The combo was far too weak, so made no difference. I started taking about 1500mg a day and after 2 weeks my ‘crampy, achy’ leg symptoms began to ease off and then slowly disappear. I had a bit of a relapse again a month ago, but only one day with the achy legs, the pain/cramps have been mostly absent. The tiredness after a relapse is still there. But I really think Magnesium helps when you have my sort of symptoms. For general health I take lots of Vit C, Turmeric, Cod liver oil as main support. Well, that’s my bit, we all have different things that have helped or not, eh! God bless you all and the best doctor, even if He does not heal us on this earht, is still Jesus! I lean on Him heavily on my bad days.

    • Vee 29th September, 2016 at 5:56 pm #

      Thank you Monika, I’ve been on a similar journey with finding what I feel is right for me and I thank Tanya for always pointing us through her words to the great physician Our Lord. There are thousands I believe of ‘therapies’ one can try but I have tried to stay close to God and honour him through my choices.

      I too am focusing on diet and follow the Paleo type diet and have now been completely sugar free for 2 months which is a miracle in itself as I am a full on sugar addict. I only have minimum fructose too as I UNDERSTAND IT IS JUST AS DAMAGING TO OUR TERRIBLY WEAKENED IMMUNE SYSTEMS. OPPS DIDNT KNOW CAPS WAS ON!

      I am going to look into magnesium malate as I too have only been on citrate. I am slowly now reducing my pain meds of amitrypliline and paracetamol/nurofen the latter I was taking every 4 hours for some 4 years for the pain which cannot be good for me. I now use stretches for my pain and gentle walking a few times a week for 15 mins or so… its very gentle as we go at my 23 month old little boys snail pace and I get to breathe and really see the world with new eyes with him. Beautiful!

  2. Natalie 27th June, 2016 at 8:12 pm #

    Hi Tanya,

    I was bed bound for 6 months & house bound for another year. Very occasionally leaving the house using an electric wheelchair. I was rapidly getting worse when I undertook the Lightening process. Amazingly it gave me my life back. I had a blip years later & Solution Focused Hypnotherapy got me back on track. After trying a number of different things I was incredibly surprise that God used the knowledge & therapeutic tools I gained through these processes to bring about my healing. I am now recovered from ME. Anyhow I just wanted to reach out & say I am always happy to chat to you about what enabled me to recover from this terrible condition and how it enabled me to embrace an abundant life again. God bless you…

  3. Mark Allman 26th May, 2016 at 8:58 pm #

    Tanya,
    I hate that you are missing out on those things so. I wish it were not so. I pray that those shoes you still love will have a positive impact with the others sent. We all lose when we allow ones like you to suffer and be ignored.

  4. Gayl 25th May, 2016 at 11:20 pm #

    Beautifully shared, Tanya! Much love to you! xo

  5. Heather 25th May, 2016 at 6:33 pm #

    I can so relate to this post. Although not facing ME, my husband and I faced similarities when he was diagnosed with Post-Traumatic Stress Disorder four years ago. He tried the recommended treatment and got worse. It’s very difficult to find treatment options, doctors belittled his situation, church people blamed us – he’s just not trying etc. We recently found better-suited treatment for him (& for me too. I need support too) and progress is happening. Standing with you and others who are marginalized by the system. Writing from Canada.

  6. David Bridger 25th May, 2016 at 5:52 pm #

    Thank you, Tanya, and gentle hugs for you.

Trackbacks/Pingbacks

  1. What I'm Into- May Jun 2016 | Tanya Marlow - Thorns and Gold - 7th July, 2016

    […] I dream I am running again.” I wrote about Why I’m  Giving Up My Trainers for the #MillionsMissing protest – and the post was shared more than 150 times on […]

  2. #MillionsMissing protest in words and Pictures – Sarah at Saje - 27th May, 2016

    […] I’m sharing one of the stories of those that couldn’t attend the #millionsMissing in person. Tanya Marlow was the first person I met (virtually) with ME. It turned out we had both shared mutual interests and friends. It’s thanks to Tanya that I was brave enough to leave the shame of the illness behind me and she is a constant source of inspiration. She is also a fantastic communicator and writer. Please read her #MillionsMissing story here: ‘Why I’m giving up my tainers’ […]

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