Trapped Inside A Cage Of RA - Literally

Many times, if you ask someone with rheumatoid arthritis, or really any chronic illness, what it feels like to live with this wretched disease, they will tell you some version of, "I feel like I’m trapped inside my own body," or, "I’m trapped in a cage of pain and fatigue," or even, "If it wasn’t for this stupid illness, I’d definitely be a supermodel billionaire inventor." (You’d be surprised how many times that last one comes up.) I had avoided that feeling, for the most part, until now, but all good things come to an end, and I am now literally trapped in a cage.

An external fixator for my ankle

Yes, literally, and I don’t mean the Gen-Z/Millennial, "O-M-G, I’m literally burning alive, I’m so hot," nouveau definition of the word. I mean the actual, real, old-school, grumpy neighbor,  "Get-off-my-lawn" definition. My ankle is currently locked inside an actual cage, an erector set of discomfort, a made-of-steel-and-iron Lego-style cage. Or, if you prefer the clinical name, an external fixator.

For those that aren’t familiar with a fixator, it pretty much looks like exactly what I described. I’m sure you’ve seen it in TV and movies before, usually when some character breaks their arm or hand really badly. It consists of 2 rings of heavy steel that are secured to my leg using thick metal screws that go through the epidermis and the dermis (read: skin) into the actual bone - the fibula, the bigger of the 2 leg bone pieces.

Then, there are smaller pins that go through the foot, from left to right, and those are the ones that really hurt. Especially the trio that goes right through my heel cord area.

It will take about 4 months to realign my ankle

Yeah, it’s as bad as it sounds, but I digress; all of those foot rods are connected to a u-shaped metal bracket. The whole thing is connected from top to bottom with something akin to shock-absorbers, which are adjustable, and each and every day — morning, noon, and night — I extend or shorten these shock absorbers by 1 to 2 millimeters. Eventually, this will result in the now-crooked ankle aligning straight and pressing flat and even on the ground. It will take approximately 4 months.

Four months. 120 days. 16 weeks. It sounds like nothing in the grand scheme of things, but, unfortunately, no one told my ankle that.

I feel trapped by the pain

I would guess I don’t have to describe the pain of living with metal screws jutting out of your bone and then pushing against those screws more and more each day, but just in case, let’s do. Imagine a toothache, then add in the feeling of getting your braces tightened, and then mix in a pinch of nerve lightning and the sting of a deep laceration. Then, finally, let an angry raccoon maul it before gnawing on it for a light lunch, and then for dessert, dump gasoline on it and light it on fire.

That’s about what it feels like, give or take, and I feel trapped. Unequivocally, irrevocably, frustratingly trapped, and it’s horrible. It’s the same feeling of inescapableness that I get when inside the MRI machine when my hands are strapped down, and just like then, I want to rip this off and run away from doctors, surgeons, nurses, and helpful family members and friends.

A panicked feeling

Up until now, the feeling of being trapped inside a body that is actively rebelling against you was foreign to me. I sort of knew what people meant, but I never felt that urgent, overwhelming desire to rip my skin off and crawl out of it. Now, though, it comes on a daily basis, and it is intolerable. The pain and pressure make me want to tear off the fixator and just live with whatever angle the foot is at now.

I would even describe it as panic — I have to take deep breaths and tell myself that there is an end date, that it won’t be like this forever. If that doesn’t work, they even gave me some sedatives as a lest resort, but those just basically put me to sleep — which I suppose is one solution, but I’d rather not just sleep away these next 4 months.

When your body is waging a war against you

So, even though I am literally trapped in a cage here, it doesn’t make the metaphorical phenomenon that many RA patients deal with on a regular basis any less strenuous. In fact, it may even be worse, at least mentally.

At least I have something to focus my anger on, and there is a definite end date in sight. Not so with may RA patients.

Living your life when your body is waging a war against you with no way to control what happens takes a huge mental toll. Anyone who doesn’t live with chronic illness, and especially RA, can’t possibly understand what it’s like, no matter how vividly we describe it — but this article should at least serve as a loose guide to anyone looking to grasp what living with the daily pain and fatigue of RA is like.

We all have to find a way to cope

Not knowing what your body is going to inflict upon you when you wake up, or even if it’s going to do anything at all, is a heck of a way to live. All of us have to find a way to become comfortable with the unknowing, the pain, and most horribly, the fact that there’s no escape, and that can take years. Some of us never find it fully, and those billionaire inventor supermodel dreams, well, they’ll have to wait a little longer, unless one of you invents a time machine to go back and make sure we don’t get RA. DM me if you have one. Talk soon. Or maybe we already did...