In late summer 2018, I took a trip with my mother to Entwistle, Alberta, in Canada where her mother was born. It had been over a year since I had been injured by an antibiotic prescription and at the time I was diagnosed with a frozen shoulder, but I loved the drive with my mom and the two dogs.
On our way to and back to Washington from Alberta, we wound our way through multiple forest fires, not realizing how much smoke we were inhaling. I had a few masks in the first aid kit and we used them where possible, but when we returned home, my asthmatic chest felt full.
After we returned home, when the anticipated normal time of recovery had ended, and my mom, 23 years my senior had fully recovered from the trip I was more than frustrated that I had not.
I was diagnosed with pneumonia and wasn’t having an easy time of recovering. It felt as if the fluoroquinolone toxicity from the previous year was attacking with a new vigor. Not only couldn’t I breathe, but walking was near impossible and my feet were worsening.
I never knew whether I was going to stand on emptiness, not able to feel the ground beneath me, or my feet would feel like they were stepping on broken legos on fire. It was never normal. It was never an okay feeling to stand, so standing became my enemy.
I fell over and over again. The day before my 52nd birthday, I was finally prescribed a wheelchair. Only it wasn’t the ultralight I had hoped for in January when I first mentioned to my provider I felt I needed wheels. That ARNP had laughed at me, and I transferred my care to University of Washington to be taken seriously.
I had injured myself so many times in falls between January and October that I now qualified for a powerchair.
The other referral that was made was for a medical caregiver to come in until I had caregiving set up through normal channels. I had no idea there were many different channels of prescribed caregiving.
I was 52. My presumtive diagnosis of hypermobile Ehlers-Danlos Syndrome was made a few months later.
It’s only been three and a half years since that event, but it remains cemented in my mind as the point in time when I could no longer pretend to manage my symptoms alone.
How do I manage my symptoms?
I surprised myself in a recent video tour around just the front room of my home, when I realized just how many things around my home that my caregivers and I’ve adapted to ease the symptoms I deal with daily.
Primary number one is my powerchair. Many people do not recognize that mobility aids measured and built to fit the dimensions of our bodies actually reduce a considerable amount of pain and fatigue.
The second primary way I control my symptoms is by humbling myself and asking for help. My caregivers make my life possible.
This may seem a little graphic, but disabled people may understand: Without my powerchair and my caregivers, I’d be stuck in a living room chair or bed, wetting myself and in pain.
But that isn’t the case. I have wonderful helpers and a fabulous robot chair!
Let me share with you a few more things I use to control my symptoms: IV rehydration infusions (self-pay), heating pads of all shapes and sizes, cold packs, including one for my eyes, my dogs which dispense oxytocin that helps control my pain, as well as some tasks that assist with other symptoms.
I use oxygen therapy to help my low oxygen at night, and KAFOs (Knee Ankle Foot Orthotics) knee braces to help stabilize my knees when I am able to be on my feet.
I have more braces and wraps than I know what to do with and I usually wear clothing with a mild compression to help the constant feeling my body is coming apart.
I eat more than my share of cough drops. They help with my dysphagia (trouble swallowing) and help a little with the constant nausea that plagues me when I’m not properly cannabinated.
Speaking of cannabis, that’s my go-to. I use canna-caps from a recipe I’ve been refining for over ten years. You can find that recipe here.
The other thing I do to ease my symptoms is I validate them. I do not listen to those who would do the opposite. They aren’t in my body.
I know what my body needs and I’m strong advocate for those things. I seek to be a strong advocate for myself and to encourage others to do the same.
There’s nothing easy about waking up every morning in pain and going to sleep every night in pain. Sometimes the pain is worse, sometimes it is better, but there is always pain.
I hope for those who come behind me, there can be a relief of that constant pain and fatigue. I hope they can enjoy their bendy bodies without incuring the pain post-party trick.
I love being a zebra- I love those things my body can do- I just want it not to hurt.