I’m sitting in my warm, comfortable bed with my computer screen a glowing rectangle on my lap in the dim light, listening to the pouring rain overlaid by the occasional roll of thunder, and barely managing to keep my eyes open. I want to capture some essence of today while the emotions are still raw, but I’m so exhausted that the screen in front of me is blurring in and out of focus.
What is so important about today that I’m so desperate to tie it up into written words, even in just a few rushed sentences? The broad answer is that today was one of my lowest days thus far since my Fibromyalgia diagnosis nearly three weeks ago. Today the positivity, energy and determination of last week gave way to the largest dose thus far of depression, hopeless, sorrow, anger and fear.
There have been a number of triggers building up over the past four days, beginning last Thursday evening when driving home after a long Board Executive Committee meeting that ran late. Towards the end of the meeting the side effects from my medications started to affect me, and I suddenly found myself struggling to speak, slurring my words, and battling to walk with my sciatica flaring up to a higher level again. Once in my car, driving the 56kms home in the rain and the dark, the side effects began to get worse, and I battled rising panic and chest pains, dizziness, nausea, and blurred vision. I simply didn’t know what to do, desperate to reach the safety of home and not feeling safe to pull over on the side of the highway in the dark and the rain, with so many trucks flying past on the road. I’m simply not equipped for such scenarios, and I’m finding not knowing when they might hit me is making me more and more nervous to drive.
People drop casual comments into conversations, not aware of the impact they might have. I mentioned to a fellow professional I hadn’t seen for some months that I was recently diagnosed with Fibro, after he asked how my Comrades Marathon had gone earlier in the year, and he replied, “Oh, my friend’s niece has that condition, and she’s in a wheelchair because of it.” Can you imagine how terrifying that knowledge is to me at this moment, as I try to figure out how this condition might play out for me, and what might lie ahead?
Yesterday, after two days of stabbing pain in my wrists and hands, and cramp in my left forearm, I was happily busy in my garden when I suddenly found my hands go weak, particularly my left hand. When gardening just two weeks ago I could pull out weeds without any problem at all. The sudden weakness, for someone used to feeling strong and capable, sent stabs of pain and fear through my chest as I found myself trying to picture a life in which I didn’t have full use of my hands.
My usually clumsiness has been steadily increasing over the past few weeks, and I have found myself more and more often dropping things as my co-ordination has started to weaken. I somehow never thought I would lose my STRENGTH though, and when I went to pick up a normal small glass of water at lunch time today and found I couldn’t, the fear went up yet another notch. Suddenly I started to seriously wonder what the future might hold.
My eyes will simply no longer stay open, and after fighting yet another almost unbearable bout of insomnia last night that saw me crawl exhausted into bed at 9pm, and finally fall into four and a half short hours of sleep at 2am, I am ready for the merciful release of sleep at last. One final thought to share tonight is this: please, please dear friends don’t try to “cheer me up” or “look on the bright side.” I WILL find my way forward, and I will find my hope, strength and determination again, soon. Then we can talk positively and find solutions together, but when I am down and scared and depressed, I just need you to sit with me in how I’m feeling, and let me know you’re there.