for those Wheelchair Tango Foxtrot moments in life
WTF moments: just walk up the stairs
“Well just walk up the stairs” was not the response I was expecting from the hotel employee, who was obviously hacked off I’d dragged him from his post ‘supervising’ the restaurant to tell him there was an issue with the disabled access lift. “Shout for help if you can’t make it work” was another WTF comment he gifted me with. At one point I even had to ask him to stop talking over me and listen.
OK, so I wasn’t in my wheelchair that day. Regardless, I knew anyone with an ounce of compassion would have seen how close I was to collapsing right then, having to lean on any handy furniture or wall to stop myself keeling over.
I’d travelled to London for work, for the first time since before the pandemic. I was beyond excited, so there was no way I was going to let being in a flare-up get in my way! The hotel I had booked was just across the river from Canary Wharf, an exciting 10 minute walk and ferry crossing, or a boring 40 minute Uber from the office. Taking an Uber every time felt excessive, so a few times I tried to take the ferry and walk it.
Despite having fibromyalgia for over 20 years, I’m still learning about it, just as the researchers are. I’ve recently learned fibomyalgia can include a mitochondrial disorder. Mitochondria are the body’s power stations, generating energy for everything, from brain cells to your gut, to your heart muscle.
In ‘normal’ people, the power station works well, producing energy for running for a bus, carrying shopping and all the other things we do without really noticing. It’s not until we go to the gym, do a Park Run or try to carry a sofa when moving house that we go beyond what our power stations can cope with. Back up generation kicks in, which is inefficient and produces lactic acid — the substance that gives you a stitch when you run, or heavy legs after hauling that sofa.
Unfortunately, those of us with a mitochondrial disorder have poorly performing power stations. In my case, having a shower or sitting upright at my desk is the equivalent of hefting that sofa, so my body is constantly working on backup power. Lactic acid does what it says on the tin — acid damages the muscles and makes me feel like someone dropped that sofa on me. I ache, from head to foot, for days after.
This was my final straw. I’m determined to have a work life and a social life, and I want to go back to doing the stuff I love, despite the fibro (and suspected Ehlers Danlos Syndrome). I took the plunge and decided to go for an electric wheelchair. I can’t wait for it to arrive! And maybe with a visible disability, the restaurant manager will take me seriously next time.
