Coming Back to Life
Pain: Physical & Emotional
Throughout the day, I experience the sensation of flu like tenderness throughout my body. I also experience moving in slow motion, feeling like I am in a fog. The day also has on and off, sometimes nagging, other times breath stopping, tear (and curse) producing pain.
Years ago, when this started, I interpreted the pain as run-of-the-mill arthritis and the fatigue to my busy calendar. It became more and more difficult for me to drive for any length of time as well as play my guitar or Harp for any period of time. Sleep became challenging with the nights dragging on and on. All of this occurred post menopausal so many of the symptoms lined up with menopause and post menopausal changes in my body.
Nagging hip pain from a pretty significant fall on black ice during Covid led me to physical therapy. I spent most of my physical therapy working very hard to strengthen muscles around the hip joint. When I was on the tens unit or getting a massage from the therapist, I sobbed. Thankfully, the therapist, a female, wasn’t put out in the slightest by my emotional response to the treatment.
At the same time all of this was happening, pain, aggravation from an injury, AND menopause, my dad was rapidly declining in his physical and mental health and eventually passed away in June 2024. This was a complicated relationship. I was not prepared for the grief that is still present. After years of therapy and trauma work, I assumed all of that was neatly tied up in a box somewhere in my psyche with a checkmark ✔️
Sleepless, I would roam my dark house at night in my nightgown, shuffling my feet, sobbing, sometimes keening out loud ( downstairs where my family couldn’t hear me).
That same summer of 2024, I was diagnosed with fibromyalgia after lots of testing to rule out other potential disorders.
Fibromyalgia
As a professional wellness practitioner, and someone who has largely been a lifelong vegetarian, non-smoker, very physically active and healthy, this was completely unexpected. And discouraging to say the least.
in case you don’t have a clear understanding of what fibromyalgia is, here is an excerpt from the Mayo Clinic website. I did not have a clear understanding so this was helpful.
From the Mayo Clinic- Fibromyalgia is a long-term condition that involves widespread body pain. The pain happens along with fatigue. It also can involve issues with sleep, memory and mood. Researchers think that fibromyalgia affects the way the brain and spinal cord process painful and nonpainful signals. That increases your overall sensitivity to pain.
Symptoms often start after a triggering event. Triggers can include injuries, surgery, infections or emotional stress. Or the symptoms can build up over time, with no single event to trigger them.
Women are more likely to get fibromyalgia than are men. Many people who have fibromyalgia also have:
- Headaches.
- Jaw and facial pain due to temporomandibular joint (TMJ) disorders.
- Irritable bowel syndrome.
- Anxiety.
- Depression.
There’s no cure for fibromyalgia. But medicines and other treatments can help control the symptoms. Exercise, talk therapy and techniques that lower stress also may help.
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Hip Replacement Surgery
By the end of the year 2024, it was becoming obvious that my right hip was going to need replaced. it took longer than expected to get in to see a surgeon and get a procedure scheduled. I didn’t think to inform the surgeon about fibromyalgia. It possibly was a combination of internalized shame, as well as not knowing the relevance of fibromyalgia complicating my recovery, and an growing awareness that most medical professionals are not generally informed about fibromyalgia.
I also put off consulting with the surgeon as I thought I would be able to strengthen the muscles around the hip joint to prevent needing the surgery. At the time, I didn’t know that there was literally no blood flowing to the hip socket joint and the head of the femur was almost completely disintegrated.
My surgery, which happened mid August, was successful in replacing the joint, but my body responded to the surgery as it would respond to a traumatic event. I didn’t sleep for two months, had tremors and spasms constantly, and my pain receptors were off the charts.
Dark Days
I was blessed beyond measure to be supported by my community financially as I couldn’t work for three months, as well as having expenses from the procedure. Gratitude here felt so expansive but it didn’t touch the darkness in my psyche that pain kept feeding.
This body that I had worked so hard to heal and find refuge in, felt alien to me. I understood on an intellectual level that I was having a trauma response to the surgery, but I wasn’t able to think my way out of that black hole. Things that were previously available to me, like dancing, which was a huge part of my life, playing the guitar and knitting, as well as other activities of daily living, felt disconnected like there was a gap between my brain and the execution of those tasks through my body.
After rounds of new testing ruling out Parkinson’s and multiple sclerosis, and a handful of other neural motor dysfunctions, I still have yet to complete another series of test with a neurologist.
Thanks to a chance conversation with a friend who has fibromyalgia, I am in the care of a tele-health clinic that specializes in fibromyalgia and is supporting me in navigating living life with this disorder.
In my darkest hours, I wanted to just disappear. I wasn’t contemplating ending my life, but I couldn’t imagine existing in my current capacity without being both a burden to those around me and being able to make a meaningful contribution to the world. What stopped me in my tracks in this devastating train of thought, was the thought of my oldest grandson Anthony and his giant eyes that are so expressive. I thought that even in my limitations, he would still want me here. I also realized that he would not be the only one.
The Way Forward
I am constantly learning that acceptance is different than resignation. Acceptance has a tinge of hope. Releasing my attachments to what I believed this season of life would look like is extremely challenging, but necessary to move forward. I keep thinking of a teaching from one of my teachers, the late Joanna Macy, NO MATTER WHAT- We tend to our core values and that which is important to us, even if the world is shifting and changing around us. I think of the yoga teachings on non-attachment, working with the shifting tendencies of the mind and cultivating the qualities of the heart. I sit with the awareness of the necessity of both lightness and darkness in the Celtic cosmology. Darkness here is not to be feared, but can be a fallow time of inner growth and revelation.
I contemplate a God who is so big and loves us beyond productivity and ability.
I don’t know yet what this season of life will bring. I recently returned from a small yoga retreat in Toronto where I led a workshop. It was an act of faith to go, and I am grateful that I trusted my capacity as well as my ability to ask the group for what I needed in terms of time and support.
I spent time the other day with my very wise friend Kimberly. We have spent the last 6 years, walking together (a lovely practice established during Covid and continued now) and uplifting one another during times of challenges. We have been friends for a very long time and our walks and talks have sustain me in these times of challenge. She told me the other day to not claim fibromyalgia. It is not mine. I am living with this disorder. But it does not define me. I respect the limitations of my body without blame, shame, or resentment.
Honestly, one of the things that has been a sense of relief for me is noting that the dysfunction of the hypothalamus is not a result of anything that I have done. Although trauma, particularly childhood trauma, is implicated in fibromyalgia it does not negate the years of healing and recalibrating my nervous system and finding refuge in my body.
I’m slowly emerging from this season, not free from this disorder, but also not held captive by it either.
I am, once again, Coming Back to Life.
