Mary Gelpi in her January 27th post, Unwell, Unafraid (http://25pillsaday.wordpress.com/2014/01/27/unwell-unafraid/), on her blog, Fibromy-Awesome, writes a cogent description of what living with Chronic Fatigue/Fibromyalgia is like: “A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well. All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it.”
This is one of the best descriptions of living with CFIDS/Fibro that I’ve read. But I winced when I read it, because Mary is my daughter’s age, and I hate the thought of her having to deal with the compromises this illness brings at her age. Yet I admire her for her honesty and spunk. At twice her age, I still haven’t been able to figure out how to manage the push/crash cycle of living within the boundaries of this illness. As she says, it is worse when you’ve had a period of time feeling well. My vet once said animals heal more quickly from things like strokes because they don’t know they’ve had a stroke—they just want to chase the ball. In a sense, our animal bodies just want to get up and go when we are feeling well. We may know intellectually that we have to be careful, but it is so delicious to feel that small burst of energy, that we just go with it.
I think for me another difficulty is how I perceive myself. Reacting to the role of invalid, which makes one feel in-valid, I sometimes push myself to go and do in order to experience myself having both social roles and mastery in some areas of my life. This isn’t always bad—on the contrary, I’ve been surprised at how often things turn out well. But I have created a life in which there is a lot of down time. From the outside, it would seem, perhaps, that the circumference of my life is small, but there is often great richness within that small circle.
I think perhaps the biggest problem is not just figuring out how to participate in life as a person with chronic illness, but also what attitude to take towards our own difficulties. Ironically, for me when I was at my sickest, it was when I was able to accept my illness and release my expectations, that I began to heal. I read Kat Duff’s beautiful book, The Alchemy of Illness, which I can’t recommend highly enough. I learned radical acceptance from her, and found in that dark night of the soul that there is something in us that is not dependent on our abilities or accomplishments, and is our truest nature.
Yet as we heal, we are also asked to revisit the question of how to live our lives, with what attitude. It seems we have to resolve the issue over and over again, that it is never settled once and for all. I recently came across this in Helen Luke’s book, The Way of Women, in an essay on suffering: “A question to be asked in moods of weakness or depression is, ‘Am I grading myself or am I recognizing the golden opportunity to suffer and so deny to some small degree the ego’s demand for prestige?” She writes that deadly guilt is often inverted pride, and we have to be on the lookout for false values, as in “I ought to be like God himself, free of all weaknesses.” However, and this is such an important distinction for me, she doesn’t equate acceptance with resignation. “Hope for release is another thing, both natural and right, as are also the efforts to come out of a mood or sickness…..real acceptance will lead us to seek appropriate help.”
I want to be a productive, functioning social being, just like my dog will always want to chase the ball. Living with this illness is never knowing on any given day who I will be, what I can do. I can’t pretend that I like crashing. I just hope I can get better at acceptance.