My Spondylitis Life Part 4 - the Good Life
Instead of talking what the disease does to me, today we’re going to talk about what I do to help myself.
For the past year (since my diagnosis), I’ve been taking Humira every two weeks. It has given me enough of a boost to get the upper hand on most of the symptoms and recover most of a normal life, but it’s not perfect. I can feel the strength of the medication tapering off, and I currently live my life on two week cycles.
The day after I do my injection, I feel like I have boundless energy and am generally pain free. By 13 days later, I’ll be feeling stiff, achy, and fatigued again. The severity is dependent on how well I stick to my rules below, although it does also have some random variation that I just have to learn to live with.
Another interesting thing to note is that all of my symptoms have a common cause, so while most of my strategies are more effective against particular symptoms, they all help with everything.
Which Kind of Pain?
The kind of pain you feel to get good in the end / good in the end
The most effective way to manage the pain is to seek out different pain. You see, I’ve come to be a connoisseur of pain and learned that there are different types. There’s the bad pain of something that is broken, there’s the constant and neutral pain of spondylitis, and there’s even good pain. Workouts and stretching suck, and are often not something I feel like doing when I start. But they are the most certain way to prevent the bad pain in the future and maintain my mobility, so I try to stay on top of them
The strenuous life is the good life.
But it’s not just doing some stretching in the morning or a workout over lunch. In an ideal world, I’d be moving constantly. Unfortunately, I make my living sitting in front of a screen. So I try to take frequent breaks to get up and go for a walk. My goal is every 15 to 30 minutes, but its usually longer than that.
I try to not sit in furniture, especially the kind that promotes slouching and is comfortable for long periods of time (looking at you couches). The more comfortable I am in the present moment, the more miserable my body will be in the future. And the more likely the fusing is to continue.
This is the simplest one. I set a bed time and a wake up time, and I stick to it. The wake up time is governed by the sun and is helpfully enforced by the cats. I found its much better to have a natural wake up than to be jolted awake by an alarm, which is related to my mandate to avoid stress. For bedtime, I aim for ~ 7 hours before my wake up time. I’ve developed various strategies to help me fall asleep quickly, which work 98% of the time. If something goes wrong and I don’t get sufficient sleep, a nap is an option, though I keep them short and try to be sure it’s due to insufficient sleep and not just fatigue. Napping can ironically make my fatigue worse and I’ll wake up more tired.
Fatigue & Brain Fog
These are trickier symptoms to manage, particularly when they vary from the two-week rhythm that I’m now used to. I address it on two fronts, both of which were counterintuitive for me. My first defense against fatigue is planning my weeks, keeping in mind what my limitations are likely to be on any given day. This works pretty well, except when I plan poorly or life throws me curveballs, such as a power outage or some other emergency. There is also the fact that fatigue isn’t always predictable.
So my second strategy is what I have dubbed “fatigue mind”. Essentially, once I realize I’m having a fatigue day I drastically lower my expectations for myself and focus on just doing the next thing. By only focusing on one thing at a time, no matter how slowly I do it, I find that I’m able to get more stuff done better. It’s still not as much as I could get done without the fatigue, but that’s why I lower my expectations and don’t beat myself up for something out of my control.
To prevent any flare ups of my uveitis, I wear my sunglasses more often when I’m outside and I minimize the amount of time I spend staring at screens. I also try to reduce the amount of stress I feel, because these two seem to be strongly correlated.
In order to keep my mind in a healthy place, I have to do the mental equivalent of everything above. I try to reduce the amount of time I spend on the internet, particularly browsing mindlessly and scrolling social media.
I try to replace that time with reading a good book, meditating, or going for a walk. These are all activities that keep my mind in shape and flexible.
But better for my mood is more direct activities, such as spending time with my family and close friends, even when I might not think I have the energy to do it. And, as inconvenient as it may be, in-person hanging out has a much stronger impact on my brain than texts or even phone calls.
The last thing on this front is to reduce the stress I feel in life. This means planning, reducing the number of commitments I have, and getting stuff done ahead of time when I can. It also means learning how to cope with challenges in life without feeling stressed, which is a hard skill to learn, but oh so valuable.
I alluded to it in previous posts, but I also have a bunch of self-imposed dietary restrictions, largely aimed at reducing inflammatory foods and increasing anti-inflammatories. These seem to vary somewhat based on individuals and their microbiomes, so it is an ongoing experiment. I currently avoid added sugar, most meats (especially red meat and deli meat), dairy, and grains while seeking out fresh fruits and veggies, nuts, and oils. Most of the foods I eat are raw or minimally processed and generally whole.
I’ve also found it helpful for my symptoms to fast, typically 16-18 hours each day.