When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible. Including my mental health ones.
A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.
One of my conditions is called Thoracic Outlet Syndrome. It was diagnosed following an MRI, along with my degenerative spinal disease diagnosis. I’m going to go on record and say I HATE MRIs!!! It’s like being squished in an aggressively squeaky toothpaste tube.
The NHS list of Thoracic Outlet Syndrome symptoms is:
pain in your neck and shoulder, which spreads into your arm – this may be constant or come and go
temporary loss of feeling, weakness or tingling in the affected arm and fingers
temporary inability to carry out fine hand movements – such as doing up buttons
For me, before lockdown, it was mostly in my left arm, with the rare bad day in my right arm; now, due to working lots more on my laptop, having had to adapt my business to being online, it’s now worse in my left arm and not so good in my right arm.
Usually, it feels like I have a sharp pencil stabbing my elbows; my forearms feel as if a heavy weight has been dropped on them; the two outer fingers on each hand, and up to the knuckle on my middle finger, feel like they have cramp; there’s also a constant stiffness in my left shoulder. I’ve gotten used to my hands and arms feeling like it, though it’s not comfortable.
Then there’s the days where I long for the stabbing and heavy feelings.
On those days, my elbows feel like they are being crushed; my forearms and wrists feel like they are being crushed in a vice; nearly the whole of my hands feel cramped and pained. It feels like I am being hit across my neck and shoulders with a cricket bat.
When it’s bad like this, doing anything feels like I am fighting against setting concrete. Many years ago, I was a bodybuilder, and, at my peak, I could deadlift more than my body weight; on the days when my thoracic outlet syndrome is bad, it feels like my arms are the heaviest weight I have ever lifted. This means that even using the body puff in the shower, seems heavy; lifting a kettle is agony. One of the most embarrassing things, though, is, if I am out for a meal and the cutlery is too heavy, or it has any bumpy edges, not only is my EB exacerbated (see part one of this series), I have to ask whoever is with me to cut my food. It’s things like that, that make me feel my independence is threatened.
As they were diagnosed at the same time, I shall talk about my degenerative spinal disease, too, although, really, medically, there’s not too much to tell: my spine is slowly crumbling.
Whether it’s because of the spinal disease, or a result of holding myself awkwardly due to all the other conditions, I always have a backache. It’s mostly tolerable, thankfully. Then there’s days like today (and yesterday, and the day before…), where moving is excruciating. If my back is rested against something, like the back of the sofa, moving my limbs doesn’t cause my back extra pain, but, as soon as I move away from that support, it’s a searing pain that makes me feel nauseous (By the way, I have a phobia of vomit; apart from hating not feeling in control, if I vomit, because of my EB, the acid in it tears my mouth and throat apart. Feeling nauseous makes me anxious). And the back pain is why my Thursday blog, usually out reasonably early in the day, won’t be released until 10pm. Better late than never, though.
As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.
Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.