My massage therapist warmly greets me and asks how I am doing. I respond by thrusting out my hands, placing them on her desk and inquiring if the bumps on my hands mean I have arthritis. She responds in the affirmative. I was hoping they were just some weird bug bite, but after over a month and a half I had to accept that the raised red bumps alongside a couple of my knuckles, and some of my fingers going a bit crooked might mean something else.
The good news she informed me is that at this stage she can help treat it. She pulled out her anatomy books, flipped to the pages that had cross sections of hands, and described what is happening to me. “See this tendon that runs along your forearm? It goes straight down to your ring and center finger. The tendon is tight and pulling, making those fingers go askew, and the resulting pressure causing the bumps to build.”
For the next hour and a half she methodically treated both hands, alternating moving back and forth along the forearms and hands. At the beginning of treatment, my hands were mottled in colour. Now with blood freely flowing healthy colour was restored. I also had ease in moving my digits.
A conversation between myself and my physiotherapist that does one on Pilates with me.
“I’m broken.“
“No, you are not.”
“I feel as if I am an old jalopy with bits falling off or apart, and being held together by duck tape.”
“You are injured and healing. Words matter. Changing thought patterns is important. You have the right mindset for rehabilitation, you do the work, you show up. But you need to change the perspective of yourself. Yes, you have an underlining connective tissue disorder. People’s bodies age. I am of the firm belief that people can heal. You need to be positive. We can all be depreciating.”
I have food for thought. I can work on changing my outset.
But
I think I am developing arthritis in my knuckles . . .
Do you have a filing cabinet in your home office or work? What would you do if the drawers started jamming, files were misplaced, or God forbid that the lock was rusted shut?
You walk by a filing cabinet and on first glance it looks fine. It is only when you start rattling and rummaging through the drawers that things appear out of sorts.
I have come up with an analogy that my brain is currently like a filing cabinet. The information is there, somewhere in the depths, but sometimes I just can’t find the exact file I need.
Welcome to my brain – a brain that was formerly solid and reliable. A brain that could quickly retrieve facts, information, or that just right word. Now it’s like it is all trapped behind a firewall, which occasionally grants access, fickle in nature. Unnerving, exasperating and irritating.
A physiatrist I recently saw for my concussion explained that a concussion effects the software of your brain. With medical support, I hope that this software updates.
In the interim, don’t mind me standing beside my filing cabinet, rattling the drawers.
Yes, I am special – a medical anomaly of sorts. Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
Why do I bring this up in today’s Slice? May is EDS and SPD awareness month – the zebra is our mascot. So, I am doing my bit by sharing my journey with you.
In my early twenties, while at university, I was constantly shuffled between the campus sports medicine clinic and physiotherapists. They couldn’t quite figure me out – if there was a joint to sprain I did it. I was sent to a Rheumatologist – he was equally baffled. No one could give me a concrete diagnosis.
There was the time I fell down and dislocated my right shoulder. It hurt like the dickens so I reached over and slurped it back into place. I didn’t bother making a doctor’s appointment and just phoned my physio for an appointment. Doctors already told me they aren’t sure what is going on with me, so why bother seeing them yet again?
I fortunately started seeing a massage therapist who advised me that my joints are hypermobile leading to a lack of proprioception. That made sense. If I don’t know where my body is in space, no wonder I kept injuring myself! She advised me to take Iyengar Yoga classes – this form of yoga uses props and focuses on forms. This was a turning point for me. I gained awareness of my body in space and consequently reduced injuries. My body is quirky and I still had other issues, but I was able to work full time.
Fast forward two decades and a car accident later and my world fell apart. I became deconditioned and experienced a cascade of symptoms which prevented me from working. I attended a pain clinic where one of the doctors had an interest in chronic pain and hypermobility. He asked me, “Have you ever heard of Ehlers Danlos Syndrome?” I said “no.” “I think you have it and need to be seen by a medical geneticist.” It took two years for the referral to go through. My family doctor first referred me to a Rheumatologist, who told me that I don’t have EDS because it is rare. He informed me, “You just have to exercise more. It’ll be a challenge but you’ll get better.” I looked at him as if he had his head screwed on backwards. I was seething inside. At this point walking was even a challenge for me. How the bloody hell was I supposed to exercise more? I informed him that I respectfully request that he refers me to a geneticist because the pain doctor insisted I be screened by one. He acquiesced, thank goodness.
The geneticist and her resident spent the morning assessing me. It was a fascinating experience, especially overhearing tidbits such as “I just read a research article that a marker of EDS is that individuals lack a frenulum.” They had me stick my tongue out and voila – no frenulum.
After all was said in done, the geneticist sat me down and the first words out of her mouth were, “You are not normal. You injure easily and require life long physiotherapy, massage therapy, and OT services.” It was such a relief to be validated. It all made sense now.
The physiotherapist that I was seeing at the pain clinic subsequently referred me to a colleague that is a specialist in Thoracic Ring/Connect Therapy modality. My new physiotherapist gave me hope. She increased functionality and decreased nerve pain.
I slowly was able to return to full time work. Pacing is key for me in all aspects of life. If I don’t listen to subtle body clues I flare up. I look normal but symptoms constantly fluctuate. I’ve accepted that I have an invisible disability.
Next time you see someone accessing a handicapped service, but they look normal – suspend judgement. They, like me, may have an invisible disability.
Wordsmithing 