Tuesday, January 14, 2014

ME, CFS, BBC Alba and Mickel Therapy

BBC Alba has just run repeats of the 2 episodes Trusadh - ME: The Toxic Tiredness - which I took part in.

The programme is about ME/CFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome): the effects on people living with it, the variation in acceptance by the medical profession as to whether it exists or not, and possible causes. It also follows a couple of us as we go through a controversial treatment, Mickel Therapy.

It's 2 years since it was originally shown, meaning it's close to 2½ years since I began the therapy - which consisted mostly of 1 hour talks, via Skype, with Dr Mickel over a period of several weeks.

Although I would not say I'm 100% better, I am considerably improved on where I was before I began the Mickel Therapy.

Because we tend to normalise whatever state we're in, sometimes I forget just how bad I was. For more than 5 years, this debilitating condition ruled my every waking moment. But revisiting it by watching the programmes and then going over my old blog posts I can see just how far I've come since then.

And the biggest thing is the realisation I no longer live in fear of the soul-wrenching tiredness and the deep concern that my life was all but over and I was just treading water until I died.

For those who have an interest in the condition, the TV programme and/or my experience and understanding of Mickel Therapy, I have put together a set of links to YouTube versions of the programme and to blog posts where I go into detail about these things. And if you really want to immerse yourself in it, do read the comments of those posts too where sometimes ideas are expanded or debated by people who have other points of view.

The experience of being filmed for a TV programme
ME, me, and Gaelic TV

The Trusadh TV Programmes (largely in Gaelic with English Subtitles) via YouTube
ME: The Toxic Tiredness (Part 1)
ME: The Toxic Tiredness (Part 2)

My definition of Chronic Fatigue Syndrome
What is Chronic Fatigue Syndrome?

What the experience of ME/CFS felt like for me
Fatigued. Chronically.
Travelling at the speed of life
Win some; lose some: you’re a lost cause

Dealing with a little bit of prejudice within the ME community
ME and CFS - is one more real than the other?

My understanding and interpretation of Mickel Therapy
Who's in Charge? (note - although this post doesn't explicitly mention MT, it is important for laying down the foundations of understanding)
What is different about Mickel Therapy? Part 1
What is different about Mickel Therapy? Part 2
What is different about Mickel Therapy? Part 3

If you have any questions, then feel free to ask.



11 comments:

allencapoferri said...

I have to admit I hadn't realized the significance of what CFS is. That's obvious when I read what I wrote. It's good to hear that CFS is something that could be addressed now.

SK Waller said...

"And the biggest thing is the realisation I no longer live in fear of the soul-wrenching tiredness and the deep concern that my life was all but over and I was just treading water until I died."

How I relate to this! I've been dealing with CFS, due to Hashimoto's Disease, since 1998. It started out only mildly annoying and progressed to out-and-out disability. Fortunately, after three years of hell, my doctor and I found a medication that makes it something that pops up only when I've been stressed out about something.

I found you via Jayne Martin. Thanks for this post!

Kim Ayres said...

Allen - I've found an improvement in my life by using Mickel Therapy techniques, but CFS remains a mystery illness and most people who suffer from it have no idea how to address it, unfortunately.

SK Waller - welcome to my ramblings and thank you for taking the time to comment. I hadn't heard of Hashimoto's Disease until I looked it up after reading your comment. It looks like a pretty grim thing to have to deal with. I'm glad you've found a way forward :)

Pat said...

I have noticed a great improvement over the years not least because you take it seriously and with respect and I admire you for it.

Jonathan Chant said...

I learned a great deal from the video clips. It was great to hear you talking and to see you out and about with your camera. I wish you all the best Kim.

Rab said...

I hope your post helps someone Kim as its packed with great info and having seen the programme the first time around have a better appreciation of CFS. I don't have CFS but know from my anxiety problems just reading about others in the same position as me who have gone on to an improved life is very precious. It rekindles hope more than a text book will do. Its just a shame so many people are left with conditions is a bewildered state without hope.

All the best

Rab

Kim Ayres said...

Pat - you've been with me since before I knew I had it - your support has always been appreciated :)

Jonathan - thank you. The shots of me standing in the street with the camera were completely set up. I tried to put across the point I'm a portrait photographer, not a street photographer, but they needed some footage to illustrate the point I use a camera...

Rab - a lot of the Mickel Therapy techniques would work with anxiety problems too - learning to deal with an inappropriate fight or flight response from the body is at the heart of the it. I'm happy to answer any further questions if it might be of use.

Guyana-Gyal said...

There are so many heroes blogging, people dealing with their troubles, illnesses, sharing it all, helping others. You're one of them, Kim.

Last year, all of a suddenly, I felt as though a truck, a train, a plane had run over me. I was exhausted. I knew it was stress from mother's cancer, brother almost dying, etc. I remembered you saying what stress can do so I took it in hand, thank you, Kim!

Kim Ayres said...

Guyana-Gyal - thank you for your warm words, and if anything I've ever said or written has been of use then I'm pleased. But I'm no hero - all I've done is share some of my experiences and periodically moan about them...

Hindsfeet said...



...wishing you well my dear....

Liz~*

Kim Ayres said...

Liz - I'm extraordinarily grateful the Mickel Therapy had such an impact