Book excerpt

 

From Chapter 2, Adapting to change

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I loved coaching and the money was pretty good… When I worked! I could barely manage 15 hours a week. On more than one occasion, I dragged myself to a session with a smile on my face and did my work all the while feeling my heart race wildly, pounding against my ribs. I would go home totally knackered and lie in bed wondering if I was kidding myself. Could I actually get better without any medical care aside from a bewildered family physician who had no clue what to do with me?

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But then I would talk myself back to inner balance – I was a life coach after all – and gave myself permission to take all the time I needed to get better. If I had to cut my working hours, then so be it. And so it was.

 

By the summer of 2004, I was managing to keep working and to stay present in the businesswomen's organization. I got voted on to the board of directors, which was a fun way to get extra visibility.

 

The heat waves that year were particularly intense. For people with ME/CFS, major changes in temperature are painfully difficult. Our inner temperature regulator is offline so we can be easily overheated or get the chills for no apparent reason. Before that time, I had only been vaguely aware that I had also become even more sensitive to a long list of irritants such as light, sounds, movement, etc.

 

A meeting was called for the board of directors on a muggy, sunny, hot and very windy day. The president of the group invited us to her house at the foot of a mountain I knew intimately, having spent most of my teenage years skiing and partying on its rolling mounds. We were sitting in her cool living room when someone suggested we sit outdoors to enjoy this wonderful day. I didn’t object in view of the enthusiasm with which this notion was received, although I knew this would make things more difficult for me. So, for an hour and a half, I sat there, wanting to die. The wind swept the sweat right off of me and made me shiver in misery. No one noticed except for the fact that I looked a little under the weather. Interestingly enough, all of these women were totally aware that I was living with a chronic illness and did nothing to try to make me more comfortable. Now you would think them heartless but the frustrating fact is that this illness, like many others, is invisible. I looked good, so all was OK.

 

The crash (or flare-up, or relapse, or PEM for Post Exertional Malaise), which followed this meeting, was catastrophic. During the weeks that followed, I basically lost my business and became very depressed. I lay in bed all day and watched the swaying of the trees through my window. I prayed and pleaded for help but could not find peace within myself, only sorrow. In more lucid times, I relived my last day in the outside world and took in the lesson that I must not be afraid to speak up when I feel that I am in a situation that makes me uncomfortable. It would be years before the lesson would sink in. We don’t look sick so why would people believe us anyway, right? It is embarrassing to say that you have special needs and we don’t want to be seen as prissy or demanding of attention. So we put up and shut up which is likely the reason we got sick in the first place, but I digress…

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