We all have good and bad days, but have you ever wondered what mine are like? If you have, read on….
My spastic quadriplegic Cerebral Palsy makes me feel like my muscles are stuck in a vise and they aren’t attched to my body.
My hydrocephalus, even though I have shunts, still causes headaches and unpleasant sensations any time of day or night, like as if someone is pressing down on the sides of my head or there’s pressure on different areas of my scalp.
My vision impairments cause headaches and dizziness.
With my disabilities, a “good day” can easily turn into a “bad one”, depending on what my body decides to do, so instead of a “good” or “bad” day, I prefer to think of each day as a series of good and bad moments.
In my good moments, I will have slept better. I won’t have as much of a headache or nausea when waking up. I will be smiling more. I will be more comfortable in my wheelchair. I will be warm instead of cold (my ability to maintain my body temperature is impaired, and I feel the cold easily. The medical term for this is “impaired thermorregulation”, and it can affect people with CP, spinal injuries, MS and more).
During these. I won’t have slept well, will have a headache, nausea and more aches when waking.
I will be more sensitive and possibly cry. I will want to nap more because the headache I had when I woke just won’t go, and I will feel almost hung over. I will be thinking “when can I go back to bed?”
Bad moments are when spasms won’t let my muscles relax despite Baclofen, Tramadol, exercises and massages or when seizures and involuntary movements make me injure myself. During these moments, I will lie in bed and hope to feel better. My muscles will be throbbing as well as have their usual stiffness.
Bad moments can have me experiencing acid reflux, nausea or vomiting because of fatigue
I’ve never wished for a new body, or a cure for my disabilities, but a bad moment will take all my energy and make me be in a bad mood scared and emotional.
Bad moments are when my husband wants to take me to the ER, or when we end up there.
I try to be as calm as possible in the bad moments when my body is not cooperating, Often, sleeping is the only way to feel better. Extreme fatigue will make me not be able to move, think or communicate.
Some people wonder when I first started wearing glasses.
My eye conditions were first noticed by doctors when I was in the NICU. I’d have recurrent bouts of conjunctivitis. When I was being held by a doctor there, they noticed that I couldn’t focus my eyes well or track things, and thought I’d probably need glasses. “Probably” was the word back then because they had no idea how a premature birth at 29 weeks, birth asphyxia and a long list of infections and a long time in the NICU on life support was going to manifest itself in my body.
They knew I had hydrocephalus, and extensive damage to the left and right sides of my brain the movement center and the occipital lobe (the area controlling vision).
They knew my body was too stiff and my reflexes were too quick. They knew about my CP.
They were right about the glasses, and at age 2 after a lot of testing, I had my first pair of glasses.
I’ve had so many different styles and colours of glasses over the years: dark red, magenta purple, and even multicolored ones with blue, pink turquoise and yellow frames when I was around 12 or 13. At that time, I was into the book series, The Babysitter’s Club by Ann M. Martin, and admired Claudia Kishi’s wild and wacky clothing style.
Now, the glasses I have have rectangular lenses with black half-frames. I remember when I was being helped to pick new glasses by the lady at the optician’s shop, and she said “how about these? You haven’t had any like these.” It was love at first sight.
All my lenses have broken or the frames have been bent. I sometimes fall asleep with my glasses still on while listening to an ebook or audiobook.
I’ve never had sunglasses that were right for me. Sometimes in the past, a friend would help me try sunglasses (I’d try them over my glasses) and they would always fall off, but that gave me a good idea of what styles were out there.
To end this post, I want to remind you to raise awarness for Cerebral Palsy by wearing green, for Hydrocephalus by wearing yellow (blue in some countries, for example the US) and white for sight loss.
I wear eyeshadows in the awareness colours when it’s an awareness day or month.