Rainy days

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.

4 thoughts on “Rainy days

  1. I am in awe of your incredible honesty in this, Laurel. I didn’t blog when I was going through the most challenging time of my life. I said, at the time, that some things are private. I also said that I couldn’t bear having to cope with other people’s responses. But, in retrospect, it wasn’t either of those things. I found it easier to not engage with my emotions. Instead, I became a Gail-Has-Leukaemia expert. I didn’t Google, but I pressed my haematologist for in-depth information. I kept meticulous records of my blood counts. I drew user-friendly graphs so that I could explain things to my family and friends. My ANC was the most important thing about me, to me, and that is what I focused on. (I have just noticed “my ANC” and had chuckle. ANC = absolute neutrophil count). I kept it very technical. To write about how you feel is to really feel it. Sharing your experience makes you more vulnerable. And vulnerability is what connects us to people. So, in a way, I cut myself off, I think. You are doing the opposite. I feel honoured to be allowed in, by you, in this way. I am sending you so much love.

    1. I’m sorry it’s taken me so long to reply to your wonderful engagement; I suppose I needed to digest it a bit, plus I was traveling and feeling a little lost in my journey with my health. Thank you for sharing your experience, and your reflections on how it was easier not to engage with your emotions and thus to share them. I completely understand this, and while I know I do at times deeply engage with my feelings and indeed feel quite comfortable sharing them, either verbally or in writing, there are many other times in my life when I keep myself intensely busy and avoid certainly most difficult emotions. I also started immediately keeping a detailed Excel spreadsheet tracking all my various symptoms, medications, side-effects, dosages, treatments and so on, and did a lot of online research (since I didn’t get much information from my rheumatologist). On the plus side, I think, vulnerability is something I certainly try to embrace and roll model, and in most areas of my life I am very open to sharing, engaging, and using this to hopefully make others feel safe enough to share their own experiences, as you indeed have here. I find such sharing greatly enriches my life; thank you for being a part of that xx

  2. Thank you for sharing your feelings and bravely speaking with such intense vulnerability. This takes enormous strength and I would gladly sit with you in how you are feeling, any day 🙂

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