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.”