30. Jan, 2017

Potato sack back

I lie in bed a little longer in an effort to delay the agony, but as I move and stretch each limb, I am quickly reminded how ineffective my body is when it comes to repairing itself.

The lactic acid burn in my legs travels up my torso into my back and shoulders where the weight of the world finds a comfy resting pad right between my shoulder blades and it hangs on for dear life.

I call it my “potato sack back” and my potato sack back’s back with a vengeance! It doesn’t end there. It travels up through my neck and down into my arms and hands where the pain can be seen manifesting itself as tremor or trembling. To the naked eye, I exhibit as fairly robust in stature. My invisible illness remains mostly invisible.

But to me it is everything because believe me, my physical fragility is not so fragile. It sinks its teeth into my skin like a rabid wolf gnawing at its very last meal. The fatigue and the pain it causes is my grim reaper. It is my moment to moment reminder of my mortality and on occasions it makes me question my very existence.

The potato sack back came back about a month ago. It’s never really a stranger at this time of year so I am not surprised about its return.

I have been under some stress of late, with health concerns of my own and of others very close to me, my son leaving home, the pressure of the Christmas season, another birthday and greater physical demands has sent me into another chronic fatigue crash, stalling indefinitely any physical recovery.

I imagine it to be a little like being a cliff climber whose fatigued grip slips through crumbling rubble sending them hurtling downwards and the only thing separating them from death is a thin rope, the rope holds and the only way out is to grapple at the cliff face and start the climb again from the very bottom, painstakingly dragging yourself up inch by inch to the top.

Well, I’m dangling at the end of the rope, fully laden potato sack strapped to the back trying to get a toe-hold.

It’s pretty difficult to feel strong when you are already burdened by so much fatigue. It eats away at you from the inside in the form of anxiety and presents itself to you visually in a landscape snapped in sepia, robbing you of the pleasures to be found on this great earth of ours.

So it’s back to the drawing board and the only way back is to unpeel myself from any obligations, which makes me a crappy family member and an unreliable and self-absorbed friend.

Few people understand what it is like to exist with CFS. I am reminded of a recent TED talk by a fellow sufferer and filmmaker Jennifer Brea whose film “Unrest” has just debuted with great success at the Sundance film festival.

Jennifer, from her wheelchair, so eloquently describes her last five years of severe disability and her frustrations at her diagnosis of “Conversion Disorder” by her Neurologist. In other words, her symptoms were physical but her illness was in her mind. This blatant and ignorant gross invalidation was almost soul-destroying to Jennifer as similar invalidation is to us all.

I was told recently by a medical doctor that he hardly sees people in old age with the same presenting symptoms as mine…he said I could “grow out of it!” He was, of course, trying in a very bizarre way to instil hope and perhaps make himself feel better, but for me, in the moment he failed miserably.

My frustrated and angry retort was that he didn’t see it because all his CFS patients die an early death and their cause of death is attributed to depression. (I was to say…a little angry!)

I have no doubt that depression and anxiety play a part in my fatigue issues, but they are not my primary diagnosis. This is not the chicken or the egg…my CFS came first!

What my future holds, nobody knows! But what I do know is that each time hope is dashed by the ignorance and clumsiness of some in the medical profession who fail to listen and respond empathetically, and each time I stop hoping for answers and possibilities for improvement in my prognosis, that climb back up from the depths seems much steeper.