Monday this week brought a flare-up of a condition I was referring to as having in the past tense. “I used to suffer from fibromyalgia”, I would tell people. I do believe that words do have power, especially if we repeat them over and over even in casual conversation, so me speaking of the condition as if belonged in my past was a deliberate attempt to put it behind me.
For me, I think, fibromyalgia had been lurking around kind of waiting to pounce for a few years, and it was going to put me down on the couch rendering me unable to do much else than change channels on Netflix. I had ignored the sore joints and inflammation in my body for years thinking it was part of getting older. I had llearned to tolerate it, compensate for it and grit my teeth so I could grin and bear it.
In 2016 I had started a new job after being with the same company for 16 years, and while the job was a struggle and the company was one of the most toxic workplaces I’ve ever worked in, I was on big success trajectory that saw me get two promotions within five months. (One should be at least a little suspicious of any company where that sort of thing is possible. It’s usually a pretty good indicator that things probably aren’t as they perhaps should be.)
By the time I started at the company I was using a TENs (transcutaneous electrical nerve stimulation) machine on both my knees as a way of dealing with the pain without taking too many anti-inflammatories. Some days I would have the pads stuck to either side of my knees for the whole day as a way of killing the pain and allowing me to keep moving.
The pain in my knees wasn’t the only sign that things were about to go off track completely. I had muscle spasms that resulted in severe pain in my arms and legs mostly. I was constantly fatigued, in fact I was so fatigued that I would frequently just go to bed when I got home from work, and the weekends were a write off dedicated to recovering enough so I could face the work week.
Nine months into the job a work colleague sat me down and told that while they all loved having me there I needed to take care of myself, no job was worth what I had to go through, and that I needed to leave. That same day I came home and my daughter, hands on hips, met me in the hallway and told me, “You’re putting 120% into me, you’re putting 120% into work and you’re putting nothing into yourself. Time to change.” I resigned the following day having decided that I would spend three to four months recovering and getting well.
For the first month I was off I seemed to be still running on the fumes of adrenaline or something. I spent a few hours a day out on my bike rediscovering cycle tracks and enjoying being outside in the sunshine. After about a month though, it suddenly hit me. The pain and fatigue took over. I struggled to get even two hours of doing anything, including everyday tasks like shopping and doing housework. It seemed like my bum was macraméd to the couch and all I could do without risking excruciating pain and complete fatigue was to change Netflix channels. Everything else was too much effort.
It seemed like all that I had worked hard for was gone. My job and my career. My social life. Any chance of having a love life. I felt completely useless and I really felt like my life was over, and to a large extent it actually was. I felt like I was left with nothing and that I had nothing to look forward to. I had been doing the rounds with doctors and all of them had told me that this was to be how it was going to be for me from now on. I was told that there wasn’t much I could do except take pain killers to cope.
I was lucky. A few months before, a friend had been nagging me to go see a holistic chiropractor who was also a naturopath. In my first session with her, she told me that she didn’t really know what was actually causing my problems or if she could actually help me get better but that she would like to try. As it turned out, it was the most hopeful anyone had been about my ability to recover to any extent so I decided to stick with her, and without going into too much detail, it was working with her that eventually helped me get to a pain free state.
It took me almost four months to get to a point where I experienced a completely pain free day. This was the day I had been waiting for. This was the day I had been working hard for. It was nothing like I had imagined it. When I woke up the morning of my first pain free day in years, I was convinced at first that I was paralysed and then when I could see that I was actually moving, that I had lost all feeling my body. It was as though I couldn’t perceive where my body was in space or that parts of me even existed. It took me a good half hour to figure out that this was my body without pain, that this is what it was like to be pain free. When it dawned on me that that is what it was I was overwhelmed by the possibilities of what I could now do and what my life could be like. I spent a whole afternoon researching CrossFit because just the thought that I could start to exercise to become fit again was just so exciting.
The challenge didn’t end there though. I really wasn’t prepared for what came next and there aren’t a lot of people talking about it. I wasn’t prepared for having a body that seemed to be completely unaware of its size or place in space. I wasn’t prepared for having a brain that had been rewired to perceive everything through the “noise” of the pain so that when the pain wasn’t there anymore everything was too loud, too bright and just too strong. Light touches felt like I had been punched. I would tell my daughter to stop shouting when she was almost whispering. I was lucky to happen across an occupational therapist who explained to me that it was normal, and that it would take a few months for the brain rewire itself again. All in all my recovery took eight months, not the planned three to four months.
It is interesting that this flare-up comes right when I had decided to tackle what’s probably the next phase in the recovery from being in pain for a longer period of time. I knew that prolonged time in pain tends to have you live in your head a lot as a way of avoiding dealing with the pain in your body. I was very disconnected from my body and it wasn’t only because I had tried to avoid the pain but also because my body had changed since before the fibromyalgia really set in. My next step was going to really starting to get down into my body again and to really ground myself in it, to really get a feel for what it feels to fully inhabit that space again and what my body likes and doesn’t like, what causes it discomfort and what it finds pleasurable.
We’re back in first phase, at least for the time being, and I can’t wait to get back to where I can get to know my pain free body again.