My Spondylitis Life Part 2: My Every Day
First, thank you to everyone who reached out after my first post! You are all great, and it meant a lot.
Second, I apologize in advance, this one may not be a very fun read. But it is a necessary one to understand what day-to-day life is like for me and — more importantly — the next posts about how it has changed me. Trust me, stick with it and the pay off will be worth going through this. (I hope)
There are good days, there are bad days, and there are flare ups. Let’s think of flare ups as a prolonged series of bad days. They suck. Sometimes I’m able to figure out what caused them and sometimes I’m not. But after all this time, my bad days now are better than my good days during The Dark Times, and about the same as my good days during The Battle.
Pain & Mobility
No discussion of spondylitis is complete without discussing the pain, even the song Believer by Imagine Dragons. The pain is a constant, even on good days I have a little. And on the bad days it is an incessant throbbing ache. Except when its searing or causing muscle spasms, but that hasn’t happened since the Dark Times. 🙏 For years I prevented myself from sneezing because the flash of pain was so intolerable.
Despite being constant, the pain is surprisingly unpredictable. It is often in my lower back, but can also be in my hips, knees, wrists, shoulders, neck, and even hands.
When in my spine and hips, it is also associated with a lack of mobility. Over the long term, the inflammation causing the pain and the lack of mobility may lead to my spine fusing.
My own personal sword of Damocles.
Have you ever tried to sleep after an injury? Online, I’ve seen others refer to “painsomnia”, and I think that illustrates the idea well. But it’s worse than that, inactivity exacerbates my symptoms, so even a good night can mean a rough morning.
On a bad night, I sleep fine until ~2–4 AM. If I wake up closer to the 2AM mark, I’ll toss and turn for a while, eventually falling asleep hard around 3. If it’s 4AM, I’ll usually just lay and wait for morning, or phase in and out of a light consciousness for a while.
Luckily, most nights are good right now, so I sleep until about 5. When I get up, I get about my day quickly, because the sooner I start moving and grooving, the sooner I’ll be through the morning stiffness and pain. I do need to be mindful during those first minutes though, while I listen to my body and see what kind of day the next symptom has in store.
The most popular metaphor to explain fatigue to people who don’t have it spoon theory, so I recommend you read that.
You know when you get sick and you’re tired? Tired to your bones? And you just can’t bring yourself to move. Picking up your arm takes concentration and a force of will.
That’s something I experience for a couple hours several times a week these days. It used to be my all day, every day.
From the outside, it looks like sloth, laziness, or — worse — apathy. But no matter how much people encourage or criticize me, it doesn’t change the fact that sometimes my body won’t do what I ask of it.
This is sort of like fatigue of the mind. Thoughts move at the speed of air bubbles in honey. Memories get dropped or rearranged.
As a person whose job and hobbies have always revolved around thinking and creating, this was a challenge for me to accept.
There are just some days where I will work less than half as fast as other days, and after work my brain will be too fried to do any creative hobbies (such as writing this).
This is what sidelined me before our daughter was born. The inflammation got into my eye and constricted the movement of my iris. Changes in the iris due to changes in brightness caused the worst pain I have ever experienced. It felt like the interior of my eye was tearing.
A prolonged regimen of steroid eye drops resolved that episode. But there’s a 50% chance it comes back. So that’s cool.
My vision in that eye is permanently worse than it was before, luckily by only a tiny amount. That eye also gets dry more easily, as well as red.
And when I’m stressed, I can feel some of the early signs return.
People with ankylosing spondylitis have a much higher incidence of depression and anxiety. Who wouldn’t? Imagine your body being so clearly out of your control. Constant pain, an unstoppable degradation of physical and mental capability. And before getting a diagnosis I was certain it was my fault.
Research is ongoing, but there also appears to be a biochemical component associated with inflammation.
At this point, I’m more inclined towards depression on my bad days. Everything turns grey and nothing matters. Except for things that make me sad, like loneliness or frustration. Those things matter a lot.
And as anyone with depression knows, it’s real hard to just think yourself out of a loop.
This is a big category, and one I haven’t fully understood in my own body yet because I’ve been too focused on all the other areas.
On a bad day, I’m not interested in eating. I have to force myself to eat more than ~50% of the calories I need.
But there’s also sensitivities. I’m still experimenting, but careful observation and playing around I’ve noticed that different foods have different effects.
Sugar and red meat will increase my pain and fatigue the next day. Dairy causes bloating and stomach aching. I’m beginning to suspect lots of bread or pasta can cause bloating and increase my fatigue.
There’s a lot more to explore here and this is something I’m actively working on understanding better this summer.
Again, my apologies for the downer of a post this week. Next time, we can talk about how I’ve tried to manage these symptoms in the past and how they’ve changed me. For the better.
Because I fully believe that my spondylitis is one of the best things to ever happen to me.