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.
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.
And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.
You can read the first in this series here.
I’ve had pain in my hips for around twenty years.
It was several years before I got diagnosed with bursitis.
The NHS definition of bursitis is:
Bursitis is when your joints become painful, tender and swollen. It can usually be treated at home and should go away in a few weeks.
Bursitis happens when the fluid-filled sacs (bursa) that cushion your joints become inflamed.
You might have bursitis if 1 of your joints is:
-painful – usually a dull, achy pain
-tender or warm
-swollen or red
-more painful when you move it or press on it
-It can affect any joint, but is most common in the shoulders, hips, elbows or knees.
Yeah. It “should” go away in a few weeks. As I said, I’ve had pain in my hips for around twenty years. According to the CDC: Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.
I’m also one of the “lucky” ones, in that I have it in more than just one joint; I have inflamed bursa in both my hips, groin, and buttocks.
For me, most days, the pain feels like I have an angry, demanding toddler, continually thumping me, wanting my attention; on bad days, it feels like someone is shoving some kind of trident fireside poker, scalding hot, into each inflamed bursa. Sometimes, because my body loves a jolly jape, it will be the manageable angry toddler, then, angry toddler suddenly turns demonic, thumping with fists of flames and spikes that unbalance me, then they’ll smile sweetly and go back to the persistent, non-flamey, thumping.
This all adds to the difficulties with walking. And standing. And, sometimes, even sitting. It’s hard to get comfy when it feels like you have giant marbles in your posterior.
Over the years I have been given medication that, unfortunately, didn’t work; to add to my curious cases of conditions, I am “delightfully” drug resistant; most of the time, the drugs don’t work (wasn’t that a song?) or I become that one in a million on the prescription information leaflet; previous incidents include me going from completely fine to as if I had been drinking gin for twelve hours straight, slurring my words and unable to stand straight, in the space of ten minutes, and being able to give a drunken lecture to my partner on fascinating facts about spiders because there was a spider on the wall; this is extra odd as, usually, I am arachnophobic.
I have also had steroid injections in my hips. Again, no joy. And physio. And acupuncture. And massage…
I have been told my only option now is surgery, but the specialist I see has told me that the success rate is low and, right now, I don’t want to put myself through that. There will come a time when I’ll feel that’s the best option, though. Just not now.
I had intended to talk about a couple of my conditions in this blog but that will make it quite long so I will add another one to the series very soon.
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.