The pandemic has changed everyone’s lives. For me, it’s changed my life in ways I never thought it would. My chronic migraines and headaches, which I’d been suffering with for over a decade, worsened. They were interfering with my life in every way possible.
One minute, I’d be fine — walking around, doing chores, working — and the next, I’d be curled up in a ball on the floor, writhing in pain. I continued going, pushing through until it was impossible.
My tics, chronic pain, and mental health all deteriorated. No matter what I did, no matter the medication I took or how much exercise I did, it worsened.
In early 2021, I found out my mother had been suffering from similar symptoms. Not for as long as me, but it was a red flag. Especially considering she ended up with a diagnosis less than six months later, while I’d been told for over a decade that it was “all in ‘my’ head”.
I was happy knowing that my mother found out what was causing her symptoms and that she was able to get treatment. But it frustrated both of us knowing that the doctors couldn’t find anything wrong with me and still can’t.
We’ve been looking for answers, actively, since January 2021. It’s now been over a year, and I’ve done every test they’ve asked me to do.
- Eye Sight test
- Eye Health test
- Eye Pressure test
- Eye Nerve test
- CT Scan
- Multiple Neuro Exams
- MRI with Contrast
- Two A&E visits during and after a drop attack
- Recordings of drop attacks (Video, Audio, and Journal Documentation)
I’ve even recorded my blood sugars, temperature, blood pressure, pulse, and food interactions for weeks to see if there was any correlation.
I went from running a mile a day minimum, doing regular weight lifting exercises, and cooking for my entire family to being unable to get out of bed in the morning due to the pain and fatigue.
But now, I’m stuck in a wheelchair if I leave my house to prevent me from collapsing in terrible situations.
The worst time I had a drop attack was only a partial, but I was stuck in the middle of the road in a busy city centre, and a driver went through a red light and almost hit me. I couldn’t get up, but I was still fully conscious. It wouldn’t’ve happened if I’d been in my wheelchair. I would’ve been able to move due to my electric wheelchair. Instead, I got a lot of verbal from an angry driver. This wasn’t the last case of me collapsing in the street. On multiple occasions, I’ve dropped in situations where people have almost hurt me because of it. So, the wheelchair was the only solution. It allows me to continue moving around even when I’m unable to walk.
While I’ve always considered myself disabled — due to my mental health issues, my mental capacity not being 100%, and my chronic pain — I never thought I’d be in a wheelchair. And of course, there’s nothing wrong with being in a wheelchair. I just didn’t think it would happen to me.
And the illogical reasoning for this is, my Father is in a wheelchair — he’s completely wheelchairbound. So, my thought process was: One Per Family. Kind of like the “One item per person” moment at the store. I should’ve known better, considering my Aunt is also in a wheelchair.
I should’ve known better, and I should’ve been better prepared for the suggestion to come about. Especially after the amount of damage I’d done to myself and the danger I was putting myself in.
It’s not being in a wheelchair that has affected me most; it’s needing to rely on people. Especially in the first couple of months of using my many mobility aids. Now, I don’t need as much help. I know how to twist in my wheelchair to get into my backpack. I can now walk on crutches, or a cane, at a decent pace instead of walking ten steps a minute.
But feeling hopeless, alone, and helpless — is the most horrible feeling for me. Notably, because I used to be my parents’ carer. I started being a carer for my Father when I was six. And less than two decades later, I’m unable to take care of them.
Anyways, that’s me having a midlife crisis.
I’ll let you know what happens as and when it does, if it ever does…
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