Jan 20, 2020

Here we are, twenty days into a new decade and weariness remains, settling over me and dragging my heavy bones into the earth. We enjoyed a few days of snow, then a couple of days of chaos as snow alternately melted, froze, and fell again, making the carpark outside our door too difficult to walk through, much less drive through. After a few days at home, I’m ready to be outside again. It’s warmer and the rain has fallen. The snow has all but disappeared except for a few piles here and there.

It’s Monday. I’m not often aware of the day, much less the date or even time of day. I “work” seven days a week. I’m self-employed or, more accurately, a professional patient with lots of employable skills but only the daily energy for one to three hours of sustained focus and critical thinking. Those good hours are precious to me. I try to take them every day, broken into periods of rest and exhaustion as needed and whatever time I can spend outside.

It’s Monday because I’m about to start working on an annual editorial task — one that I’ve had every year since 2007, one that I wonder I’ll have until I die. It’s a task that usually takes me 16 to 20 hours each year, and that’s five to six of my current days. I’m reluctant to begin, but that’s what I’ll do next.

In recent years, my “good hours” have fluctuated between three to five a day, and I’m hopeful to get back to five again this year. I’m too tired to work on my health, so that is why I must focus on it as much as I can. The past few days, I slipped back into my chocolate addiction. The resulting sore throat and tongue ulceration tell me that I’ve probably been allergic to it — or rather the sugar — for the past 27 years.

Years and numbers seem to hold more meaning for me at the moment. In July, it will be 30 years since I first became ill. I’ve thought about it a little lately. The drama of that time seems so small now, but the effects no less devastating and life-changing. It was just before my 24th birthday. I attended a dinner theatre with my workmates, ate a meal of apparently spoiled fish and suffered a devastating case of food poisoning. Everyone at work thought the beer I’d drank caused the sudden onset of continuous vomiting. I’d been more gregarious and outgoing than they had ever seen me. As the days turned to weeks, months, and years, it was clear — to me, at least — that my life had permanently changed.

It’s one of those moments you wish you could go back to and change one thing — for me, eating the meal that ruined my life — but I know now that it wasn’t the meal so much. Everything I’ve learned of chronic illness through experience and research tells me that, given strong predisposing factors, some event would have eventually triggered the switch.

The fact is — I realize now, not so inevitably — that a serious physical illness was treated as a mental illness and medicated with the harshest pharmaceuticals of the day. I can look back on myself — under the influence of those medications — with as much forgiveness as I can for the medical doctors that prescribed them.

Last week I attended the second part of a fibromyalgia program at the local hospital. I was rather excited — I know, sad, right? — that this segment was with the psychologist. I was hopeful of learning the latest techniques in cognitive therapy and other tips and tricks for living with chronic illness. It turns out it wasn’t about that, but about dealing with the grief of chronic illness and coming to acceptance.

I’ve had 30 years to deal with most of the grief — I’m not so sure of acceptance. Even when I reach a better level of managing my currently severely compromised health, I’ll still deal with some level of pain and exhaustion every day. I’m not being negative — indeed, I look forward to recovering the progress I made before our road trip — I’m just being realistic.

I’ve known and used many of the tools of whole body/mind wellness — cognitive therapy, alternative medicine, mindfulness, yoga, and meditation. However, there’s a residual “weight” from all those years of illness and struggle that I’m not sure I can let go of in this lifetime. I hope one day to be disproved. Meantime, I’m still full of hope, but it’s a realistic hope.

I know some people will say that my mindset dooms me to fulfil this prediction of some level of lifelong disability. I say that driving myself into a frenzy of positive thinking — which is ultimately disproved by the harsh reality of ME/CFS — is the mental trap that brings more pain. You can only struggle against the invisible shackles of chronic pain, illness and societal expectations for so long. Eventually, you realize it’s time to work with your illness and not live in denial as many would have you do.

Would I like to be “well”? I would love that! I have so much I would love to do and, I think, unencumbered by the limitations of illness, I could live a thoroughly fulfilled and glorious life. I still feel life is fulfilled and glorious, but the quality of it with chronic pain and illness is different. The limitations are restrictive. To live in denial of that would be to set myself up for a rapid nervous breakdown when the vessel (my body) failed to deliver what the navigator (my mind) demanded of it.

If you came here for positive thinking — you came to the wrong place. I also don’t ply my trade in acceptance although, at some level, I think I’ve come to terms with the quality of life I have. I’ve become more selective about all the marvellous things I want to do with it. I’m all about self-compassion and encouragement — building an authentic life with a body and mind that doesn’t always work the way you want.

Rather than acceptance, I feel the past 30 years of life have finally brought me closer to forgiveness than I have ever been before. Forgiveness for the doctors that gave me all the psychoactive meds that perhaps forged my brain to be what it is today, but most of all, forgiveness for myself seeps in. Forgiveness for all the things I did wrong — things I judged myself and hated myself for over many decades. Forgiveness for not always doing my best for and by the people I loved best, regardless of whether they understood me or why it happened. I’ve forgiven the things they did wrong by me, or at least the things I figured out. Their forgiveness for my behaviour is something beyond my control. I hope they found some level of it. I know in my heart and soul that I never meant to hurt anyone or anything.

A life with chronic pain and illness has taught me that self-love, self-compassion and self-forgiveness are more fulfilling goals than self-acceptance. I’m not great at any of the former, but they are things I work at every day. I believe that one day I’ll know I truly gave life and my loved ones my all — even when it seems life had the upper hand. That steadfast belief is perhaps the one that will carry me towards the last step of this life and into the next.

To me, that is true happiness.

With love,

me

P.S. Just got back from a walk with Sammy. A couple of trees had fallen in the recent storm, and the raven squawked a greeting.