June 7, 2021

Head Writer

When I logged in to this blog for the first time in over a year, I read through a couple of posts and thought, wow, I used to write regularly. What happened to this satisfying habit of mine? The answer is a bit of a saga, and potentially a boring one depending on your perspective. Some people simply do not want to know about other people's health issues. If that's your perspective, that's okay, go back to whatever you were doing before. I get it. 

 If you do want to hear my saga, read on. I'll try to keep it brief and to the point.

I had kept up this blog for nine years when I ran out of steam. I had told all my stories worth telling, and although some notable stuff still happened in my life I didn't yet have enough perspective to write about it properly. I was also busy working, and keeping fit enough to keep working, at my physically demanding job as a baker. My daughter had major spinal surgery late in 2019 and the lead up to it, and the recovery from it, took a lot of energy, physically, mentally, and emotionally from her, but also from me as her mother, advocate, and caregiver post-surgery. She was starting to recover well by February, 2020 and had begun to be able to socialize with friends. She was even able to help with a theatre production doing the lighting cues from the booth. Life was starting to feel normal again. Maybe I would find some brain space to write and post on here, or perhaps even in a new format.  And then, the pandemic hit. 

I was laid off from my job March 19. I slept hard for a month, my body taking a much needed break. My mind, too, I suppose. I felt anxious much of the time with no job to focus on, so I came up with a schedule for my day. Part of the schedule including writing out my anxiety about the pandemic in a journal most mornings, followed by a walk or run. I began to do solo creative projects, drawing and collage, which I had not done in years. Life settled into a bearable pattern while I tried to figure out what I was going to do with the rest of my life.

On May 21, 2020 I drove to my massage therapist's house for my monthly appointment. I have struggled with back and neck pain for many years, due to minor scoliosis, a skiing accident and a fairly serious car accident. On the way home I decided to stop at my aunt's new house. I was not going to go in. I simply wanted to say hi and drop something off for her. I'm always a little foggy after a massage, and it would have been better to head straight home, but I wanted to see my aunt. She asked me inside and I thought, okay, I will sit at her table for a few minutes, have a glass of water and go home. She showed me around the new house, pointing out things she and my uncle would improve and change. I spotted a nice-looking back deck off the kitchen, so I walked out to it to see the back yard. I didn't realize the plate glass patio door was closed because it was crystal clear. I smacked, nose and forehead first, right into the glass and bounced off of it. I felt a bit dazed. My aunt felt terrible. I sat down for a few minutes until I felt okay enough to drive home. 

Over the next couple of days I developed a dull headache in the area where I had smacked my forehead. I thought the pain not serious enough to call the doctor about, so I took it easy until it subsided and  carried on as normal. The morning of June 10th I awoke with a low-grade fever and a pain under my left eye. I called my doctor, wondering if I had Covid19, of course. He diagnosed me with sinusitis over the phone and suggested Tylenol and rest. After four days I started to feel better. On the evening of  June 14th the fire alarm went off in our building. My daughter and I went outside, me clutching a cup of tea, and sat under a tree, chatting with a neighbour until the fire department cleared the building for re-entry. As we walked back into the building I stopped to talk with another neighbour. I felt something strange, like a light 'clunk' in the back of my head. The next morning I awoke with the worst headache I had ever had in my life. Pain and pressure pulsated relentlessly. I woke my daughter and asked her to take me to the hospital. Because I could not have anyone in the ER with me due to Covid, I struggled to explain my pain to the doctor. He examined me, confirmed sinusitis and prescribed antibiotics and a nasal spray. The only symptom of sinusitis I had was the headache and some facial pain. I had no excessive mucus, no issues breathing through my nose, just a terrible headache twenty four hours a day. the next weekend I was back in the ER. The doctor there changed my antibiotic. Still, the pain did not subside. I tried everything. I stuffed so many pills down my throat hoping something/anything would take away the feeling of a bear trying to chew the top of my head off. My husband took me to the ER again. The doctor was baffled. The intravenous migraine treatment just made my nose ache excruciatingly. He ordered a CT Scan. The CT Scan confirmed sinusitis, but everything else looked normal. The pain carried on, and on, and the doctors could not figure out why. I think I visited the ER six times in total, just begging for help with the pain. I silently hoped they would admit me and deal with whatever this horror was, but no. The doctors were kind, but I think some of the nurses wondered if I was a drug addict. Some of them definitely thought I was a drama queen. After four weeks I was sent to an Ear Nose and Throat doctor who prescribed a more specific antibiotic, even though he said my case of sinusitis was minor and he was also baffled by the severity of the headache. He ordered another CT Scan which, two weeks later, showed the sinusitis had cleared up completely. When we went for the consultation he looked at miserable, exhausted me and called the hospital. He got me in that afternoon to see an Internal Medicine Specialist.  

I had been in contact with an old friend, Dawn, whom I had not seen in nearly thirty years. I had sent her a message when I heard her mother had passed away after a battle with cancer. Dawn had heard I was dealing my own health issue and kindly asked me about it. When I described my symptoms she told me about a friend of hers who had a sudden onset of similarly debilitating symptoms, and suggested I find someone who could assess me for a similar diagnosis because her friend was doing so much better after being treated by a sports medicine doctor for concussion. I was glad the hospital let my husband come in to the appointment with the Internal Medicine Specialist. We waited three hours in her waiting room and I literally leaned on him for support. My husband and I had been discussing the possibility of the smack into my aunt's door being the root cause of my trouble. My wonderful daughter and main caregiver (my husband was dealing with the stress of running a busy resort during Covid and a Province-wide travel allowance) had written down the details and timeline of my case for the specialist, which was incredibly helpful. The IMS diagnosed me with probable concussion and ordered two weeks complete rest in a dark room (and also blood tests for everything from AIDS to vitamin deficiency). What a miserable time that was, but I endured it in hopes of recovery. Reading was a no-go, and I was ultra-sensitive to noise. After the two weeks in a dark room the pain had not subsided, and I was still barely sleeping, even with a sedative. I felt like I was in a rocking boat all of the time. My GP referred me to a neurologist and I finally got help for the pain. By way of a diagnosis which he took some time to reach (He ordered an angiogram in the meantime, which showed nothing abnormal), the neurologist decided I had a neck and shoulder soft-tissue injury probably caused by the head smack, which was causing nerve pain in my head. He prescribed physiotherapy, including IMS needling which is similar to acupuncture, massage therapy, and allowed for the continuation of my chiropractic treatments as long as they were gentle. The IMS needling physio decided I had whiplash. My massage therapist had additional thoughts on my injuries and treated my whole person. On Dawn's advice, as well as my sister's, I sought out and found a physiotherapist in our city who specializes in concussion and vestibular issues. After our first consult on September 25th, she said I had enough symptoms to be treated with concussion therapy. She gave me tasks and exercises to do that had nothing to do with lying down in a dark room. I soon saw big improvements and gained the confidence to keep pushing myself. The idea was this: "Neurons that fire together, wire together." She had me walking around the block, reading a little bit, doing word searches and colour-by-number pages within a month. Without her and without my three other therapists (and of course my amazingly patient family) I would not be typing this today. It has taken a village and a lot of discipline to get me this far. I still have a few miles to go, but I was able to go off the medication earlier this spring. I continue to have pressure in my head and stiffness in my neck, but much, much less pain. I still have to watch my screen time. I can't listen to music for hours like I used to. I need lots of quiet breaks between social visits. Driving is tiring, but I can drive. Grocery shopping is tiring, but I can do it. I still cry when overwhelmed emotionally. Sometimes I forget things I should remember. But, I am 'getting there'. I am mobile and operative, and incredibly grateful. 

After meeting my concussion physiotherapist and starting her exercises, as soon as I could manage to pick up a pen and focus on the page I started writing down to-do lists and schedules at the beginning of each day. The reward of this daily effort was to track my progress, but I also admit to a slight obsession with documenting events in my life. Recently, when I realized I could write a decently long email I decided to try a blog post. I believe writing is great brain work, too. This post has taken several days to compose and edit, and it's probably still full of mistakes, but it's a start. The purpose of publishing this post is to share my story in hopes of helping someone else - like Dawn helped me by telling me her friend's story. I know this sounds trite, but if I can spare even one person the pain and suffering I went through for the length of time I endured it, my post will have been worth it.

4 comments:

  1. I am glad you shared your whole story. For a lot of reasons ... I care about you and if my shared strength and prayers can contribute, I want that. Like you, I believe sharing knowledge is hugely important. And, simply, we are better together, it’s a truth that never gets old. Thanks for your words.

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    1. I just realized I had failed to moderate my comments. Thanks so much for this comment. Thanks for caring, too. xo

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  2. Rebecca I had no idea of what a struggle you have been through. Wow, you are a warrior to have gone through all of that. And telling this story will help someone for sure. I am so glad you are doing better. I love you.

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