Looking for the light
There are fleeting moments when I think that I’m coping with ME/CFS and then I crash, again. As I struggle to climb out of the abyss for the umpteenth time, I wonder if I can ever do this again. Saying that, I know that there is, up to this point anyway, a still, small voice that urges me not to give up.
ME/CFS has been my unwanted companion for 19 years. Before it bit me I was an active person who bragged about my health and fitness. I should not have done that, I tempted fate. Being a wife, mother of two sons, a part-time nurse and volunteer defined who I was. Many years later, I have no idea who I am and I cannot say aloud, I am that person who is chronically afflicted.
Floating along on the river of “denial”, I’ve been fortunate to have a supportive family, though I know there are times when they have doubts. And why wouldn’t they, when I have so many of my own. After all of the research I’ve done, I know that ME/CFS is a very real condition and I have it. But there are times still, when I berate myself and wonder why I can’t shake the beast.
The psychological impact of ME/CFS has been the most difficult hurdle for me. Depression, the black dog, is ever near. I detest taking anti-depressants but I’ve come to accept grudgingly, that I have to take them on occasion. My first bout of depression happened pre ME/CFS, just after the birth of my first son. Post partum depression wasn’t recognised back then, as it is today and I toughed it out, without chemical help. I wonder if something switched on or off in my brain then that led to what I’m experiencing today. So many questions, it hurts this wonky brain of mine.
When the black dog stays away, I do fairly well. I figure that I’m functioning at about 60 percent on a good day. This means that I can partake in some physical activity, walking, a little gardening, or some housekeeping. Although I know the importance of pacing, I haven’t mastered the art. I overdo and the inevitable crash will come, along with my friend, the black dog. He is so familiar, I should name him, Sad Sack comes to mind.
These days I am trying to cultivate an aura of gratitude. I’ve been told that one cannot be grateful and miserable at the same time. I am grateful for many things, my husband who has been making me laugh for 38 years, two fine, intelligent sons who coped well with a Mom who changed overnight and many friends and family who stand by me, even those who think it’s all in my head. Oh yeah, it’s in my head all right, just not in the way they are thinking. I count my lucky stars that I live in a wonderful place, where community matters. It is post hurricane Igor here in Newfoundland and we survived, devastation everywhere but the people came together and helped each other. That’s what we do here, it’s been that way for five hundred years.
When I get in my car and drive a few minutes and I can see the ocean and breathe in the beauty around me, I know that I am a fortunate woman. So maybe that is what defines me now, I’m a grateful woman, thankful for what I can do. Of course there will be times when I’m too sad to see that but I will reach deep to grab that feeling again. For now I find happiness in the moments, knowing it is not a sustained state. As my favourite poet, Leonard Cohen, said so beautifully, “ Ring the bells that still can ring, forget your perfect offering, there is a crack in everything, that’s how the light gets in”.