Posted in Explaining ME, GET & Exercising

Yesterday’s Threesome


Having read an article yesterday morning suggesting ME can be bettered by both GET and CBT, I was at the ready for the surprise phone call that followed.

One which led me to speak with radio host Matt Cooper live on his show The Last Word broadcast on Today FM and also with Professor Michael Sharpe, co-author of a paper published yesterday from Oxford University.

Additionally, it’s been brought to my attention today, November 3rd, the radio show is inviting people to air their thoughts re GET and the PACE trial, should you wish to do so, please follow this link.

 

Posted in Explaining ME, GET & Exercising

The Elephant of Exercise


Last Wednesday, an article was printed in the Irish Independent stating: “‘Sufferers of chronic fatigue syndrome can benefit from exercise.” (Read full article here)

As an ME/CFS patient, this article did more than make my blood boil. Should exercise benefit patients, then why are so many of us housebound and bedridden? If exercise was a cure, then ME/CFS would be extinct. Those of you who have read my earlier blogs know, I tried using exercise to make me better, I undertook Graded Exercise Therapy and it made me worse, not better.

And those of you suffering from ME/CFS know only too well, the ill effects of GET on our bodies.

Needless to say, upon reading the article I posted a response to the paper here and my letter has been printed in todays edition of the Irish Independent.

Exercise did not help my ME

As an ME/chronic fatigue syndrome (CFS) patient who has tried Graded Exercise Therapy (GET), I was deeply upset to read the article ‘Sufferers of chronic fatigue syndrome ‘can benefit from exercise” (Irish Independent, January 14).

In fact, GET made me worse, not better.

You see, ME patients suffer from a range of symptoms, one of which is Post Exercise Malaise (PEM), where a patient’s body “crashes” after mental and physical exercise.

The extent of PEM differs between patients, as ME/CFS presents itself in mild to moderate to severe in form. Those severely affected are bedridden.

I can’t and won’t speak for other ME/CFS patients, but I can speak for myself, as a patient who has lived with this debilitating condition for over three years (I contracted it when I was 30 years old).

My symptoms range from debilitating fatigue, nausea, lack of concentration, PEM, sore throat, sore ears, muscle pain, joint pain, swollen glands, electric shocks in my fingers, torso spasms and insomnia. Different days throw up a differing variety of symptoms.

If GET did cure ME/CFS, I’d be better by now, having tried a programme under the supervision of a consultant for 18 months.

Instead of increasing exercise, we had to pull back on my exercise, as my body continually crashed.

As a regular reader of your paper, I encourage your journalists to further investigate ME/CFS and look forward to reading well-founded articles concerning research in the field of ME/CFS.

Marie Hanna Curran
Co Galway

***Note: The editor amended my letter. I stated “Differing days throw up a differing variety of symptoms. If GET did cure ME/CFS, I’d be better by now, having tried a program under a consultant for 18 months. Instead of increasing exercise, we had to pull back on my exercise, as my body continually crashed. Ordinarily, I can pace myself about my home (I’m housebound 90% of the time), completing small chores such as cooking my dinner between resting periods. During a crash, I’m bedbound, walking to the bathroom the greatest victory in my day. I’d very much like the author of this article to look into the facts behind the studies mentioned. Some studies claiming to be cures for CFS and ME have in fact used control groups suffering from chronic fatigue, not ME/CFS”.***

For those of you unfamiliar with the controversy surrounding exercise and ME/CFS. Here is a short backstory: In the UK, a reported five million pounds was spent on research called the PACE trial.

To quote the authors, Peter D White, Michael C Sharpe et al, this study was “a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy”.

The outcome of this research promoted the use of GET and CBT for ME/CFS patients. However, upon close inspection, it was found the authors studied a group of people suffering from idiopathic chronic fatigue, depression, and any state of fatigue, none of which are depictive of the illness ME/CFS.

Yet, media outlets such as this one, promote such studies, telling ME/CFS patients, exercise can help us! If only it did..

Posted in Accepting ME, GET & Exercising

Yes to GET or no to GET? Part Three


You’re Fired…

Last Friday, I sat in front of my consultant and am now consultantless…again.

However, unlike my other two firings, this one ended amicably.

Kicking off our meeting, I did as I always did, I read my A4 sheets of daily symptoms, only this time boldly added “my final Graded Exercise Therapy was on September 30th and I’ve no intention of returning to it.” After which, I laughed.

While my consultant scratched her head, I explainedhow GET had been flung from the nearest window. Thankfully, she agreed with my pulling the plug and agreed crashes are to be avoided. GET was indeed making me worse, not better. It had to go.

She then dubiously questioned my nightly stretches, asking if I’m still capable of maintaining six to ten minutes, which I am. I don’t wish to exacerbate my muscle wastage and am well aware of the threat of osteoporosis. I’m proud of my ability to do these and she was happy to write something positive on my wrap sheet.

Next, she toyed with other avenues, trying to figure out if there was any form of exercise my body would tolerate but there was nothing and she too laughed at her medical inability to come up with an alternative exercise solution. All her academic accreditations bamboozled by myalgic encephalomyelitis.

Sitting at opposite sides of her large desk we both laughed our asses off at the wonderful enigma that is ME and its intolerance to both exercise and logic.

When the laughter stopped, she looked at me across her desk and fired me.

As she explained, her job was to oversee my GET and as I was no longer following a plan, that left her one job less and me consultant less.

However, our meeting didn’t end there. Knowing she was about to send me out the door one last time, she spoke candidly about my positivity towards my illness and my strength, complimenting me on both. We also discussed my gut instinct and how well I know my body and I then hit her with a second bombshell.

Smiling, I told her “I don’t mind if I never run again. Imagine, I can say that. The person who twenty months ago, was fighting to return to running, thinking my life depended on my hobby!!” Laughing, I continued “I don’t care if I never run again, I can survive without it, I don’t need it. I’m happy.” To which, I added “Of course I’d be happy if it re-entered my life in the future but my happiness doesn’t depend on it.”

After these profound statements she sat back in her chair in silence for a few seconds while I sat grinning like Indiana Jones in the movie instalment The Last Crusade. In his final test toward finding the Holy Grail, he had to take a leap of faith and step off a cliff edge. I’ve taken that step off my ledge, I’ve stepped into the unknown and guess what, a path has come up to meet me. I’m not angry at losing my past, I’m not scared of my illness and I don’t worry about my future. I’m on a path toward my future, heading into the unknown and am excited by it. It won’t be easy, just as the previous two years haven’t been easy but I know I’ll be fine, I know everything will be as it will be.

We then had a further discussion on my acceptance of my illness, acceptance of my limitations and acceptance of the unknown. We discussed my box, i.e. my home and how I manage to live within it, knowing what I can and can’t do, knowing how to pace myself. Calling myself lucky, she looked at me with raised eyebrows and I explained the 25% of patients bed ridden, unable to do anything, would consider my living in my box, winning the lotto. I am indeed lucky and wake every morning knowing so.

Agreeing with my pragmatism, she talked about how I could be a whole lot luckier and we again laughed, as I joked about what it would feel like to be awake for 3/4s of the day as opposed to 1/4. And what it would feel like to only require eight hours sleep, never mind not having to put up with my many daily symptoms and the constant fatigue.

Toward the end of our meeting I told her I’ve no regrets and am happy with my decision to try GET. I needed to try it, I needed it mentally, it was part of my path toward acceptance.

After more laughter at the horribleness of knowing there is nothing more she can do for me, we agreed I will continue pacing and resting and living in my box, maintaining my stretches and meditation.

Then we shook hands for the last time, my last set of A4 pages left idle in my handbag. And for the last time, I read the sign in the waiting area of the clinic, the one that says “sickness brings patience, patience brings perseverance, perseverance brings hope.”

http://www.mariehcurran.com

Posted in GET & Exercising

Yes to GET or no to GET? Part Two


At present I walk 25 minutes every two days. Athlete of the Year to me.

The basic rule of GET is never to push myself, and in order to survive, I must live by this rule strictly. It is hard to gage my limits though, as I never hit my treadmill thinking yippee I am going for a walk, I hit it thinking right get this over with. I have to drag myself to the beast, force myself onto the mat and bribe myself to hit the start button, almost tying my hands so they cannot reach the stop button until my allotted time is done. In short, I hate my treadmill but I believe I have to exercise. The idea of sitting on the couch 24/7 scares the crap out of me and I worry my body will completely shrivel up.

When I’m on the machine I’ve imaginary conversations with ex running partners, or pretend I’m at the end of a race on empty with only a few hundred metres to go but I never felt as bad during any race as I do while on my treadmill. It is torture.

So, back to the never push yourself mantra. I have to push myself to get up on the treadmill and to stay on it but can never push myself while on it. How is this balancing act done? I have yet to get it right.

My body varies from day to day. It varies from hour to hour within each day, there are weeks when I know my body cannot attempt walking at all; and the inner voice questioning should I try and do something small or sit and rest but experience has taught me STOP.  I’m too stupid to fear failure and this has led to some interesting post exercise incidents.

There was the day I knew I needed to pull myself off the treadmill but I was so close to my target, pushing myself for one more minute surely won’t be that detrimental? That one extra minute had me shaking from head to toe, my body didn’t know if it wanted to puke or pass out, a week later and I finally overcame my silliness. On another occasion, pushing myself led to falling to my knees in my shower afterwards, my legs too weak to hold me, again a week passed by before I managed to recover.

These incidents reminded me pushing is dangerous, every footfall on my treadmill is like being in the death zone on Everest. I have to listen to my body, stop before I empty the tank, keeping a small bit in reserve, energy to make my dinner, energy to shower, energy to dress. Everything I do requires energy and so I have to pace myself during my GET in order to make it through the rest of my day and avoid a full blown crash. It is hard to get it right all the time, my friend myalgic encephalomyelitis unpredictable.

GET is not getting easier, there are setbacks, the worst setbacks are when I increase my minutes exercise thinking myalgic encephalomyelitis is in agreement and then BAM after three sessions she will whack me across the knees. My body will take to my couch for a week, after which I start back on the treadmill doing less than a month previously and slowly start rebuilding again. It’s as if I’m constantly taking leaps backwards and then slowly shuffling forwards. Last Christmas I had two very bad crashes back to back which seem to have maimed me or lingered and everything including exercise is harder now than it was this time last year.

Thankfully I’m so brain dead I don’t realise the severity of my knockbacks until I sit in front of my consultant and list off the previous few months of hell and all I didn’t achieve in our loose plan. Those moments are funny; I’m reminded of what it is like looking at me from the outside. You see, I’m in a bubble, the small bit of concentration I have, used to grapple with the moment in front of me but for a brief second I understand just how crap my little exercise routine is and how frail my body has become but when I leave her room it’s all forgotten as I have to concentrate on walking to the car where my husband is circling the drop off area.

My consultant is fantastic, she understands there can be no plans with myalgic encephalomyelitis, she knows I have no control over my body and she never gets upset when I tell her I am nowhere near where we set out to be in our previous meeting. Instead she starts with a new blank sheet, the old one in the bin. To me this is the golden rule of GET, having no set plans.

As I said previously, I am worse now than a year ago, my sleeping pattern went from 12 hours a night to 14 hours. Everything is harder, myalgic encephalomyelitis appears angrier. Is GET the cause? Or is the illness getting worse? Did those crashes hamper some part of me previously untouched by ME?

Beating Breath by Marie H Curran

Some climb mountains
To lose their breath
In clouds of timeless space.
More swim seas amid the foam
Their bodies’ one with waves.
Others race, plunging minds
Increasing lungs and air.
A few will dance beating legs
Music in their breath.
The rest will sit and awe at dreams
Their steps too small to count,
But every step, a beat of breath.

http://www.mariehcurran.com

Posted in GET & Exercising

Yes to GET or no to GET? Part One


GET is controversial, some ME patients refuse GET as it worsens their condition, some doctors force patients to participate and other professionals, hand out generic exercise plans, a one plan fits all scenario.

As if the patient lying in bed in a darkened room, can be treated in the same manner as a patient who can walk a few steps to the bathroom, or the patient who can manage to leave their home for an hour once a week. Every patient is different, we have different severities of symptoms and we have endured myalgic encephalomyelitis for varying lengths. No two patients are the same, just like any other illness.

To me, Graded Exercise Therapy is walking a tightrope on fragile toes.

When myalgic encephalomyelitis arrived on my couch, the miles of running, the races, the yoga and the horse riding, all vanished before my eyes. But my mind and limbs were trained to exercise, they had pushed through pain in races, steered over jumps, held various yoga poses in sweltering heat. This body was once fit and exercise was once my friend.

In February 2012 without realising, I placed myself on my own version of GET; walking on a treadmill every two days in my home, I started at ten minutes every two days and gradually added one minute every four or five sessions. It was painstakingly slow and I hated it, but a girls gotta do what a girls gotta do.

Then, in April 2012 I met a consultant naively thinking he could help. Instead I was greeted by a generic exercise plan, a plan in which he assumed I was a gym member and assumed I had access to an exercise bike.

Attempting to be diplomatic, I asked if his plan could be amended; explaining the nearest gym was a twenty minute drive from my home and my body wasn’t capable of driving the journey, exercising and then driving home. I rarely drive now and the odd time I do it’s for short distances, my friend myalgic encephalomyelitis and her brain fog clouding up my windscreen.

All exercise has to be completed within my four walls.

He refused to tailor the plan. It was his way or no way. Being a stubborn twig, I walked out his door.

Fast forward four months, when I walked in the door of a different consultant. A doctor who listened, studied the exercise I was doing, questioned my diet, did all the things a doctor is expected to do, before drawing up a specific plan suited to me. When I say plan, I mean we set goals, loosely.

On my first visit we decided to ask myalgic encephalomyelitis politely if she would let me jog thirty seconds along with my walking routine and hoped to increase the jog every thirty seconds once a month.

I was told to be careful, to listen to my body, not to push and pull back if myalgic encephalomyelitis reacted badly at any time. I had run a marathon; this should be easy, right?

It was far from easy and my body crashed over and over during the following months, a record on repeat. So all jogging attempts were shelved and we stepped back to walking, which to me is like climbing Mount Everest with no Sherpa. or Oxygen.

There are weeks when I won’t be well enough to exercise at all and there are days I hit the stop button minutes into my session, and on the days I do exercise, I complete nothing else bar making my meals, my body unable to cope with any additional expenditure. If a visitor calls, or I have a doctor’s appointment, the exercise is shelved, the energy tank not capable of stretching that far, myalgic encephalomyelitis robbing me of my store…