Today, I want to talk about something deeply personal: ankylosing
spondylitis (AS). It’s a type of arthritis that primarily affects the
spine. In my case, the vertebrae in my spine are fusing together—that is what
the “ankylosing” means. The result? Pain. Stiffness. And a very different way
of moving through life.
AS doesn’t look the same for everyone. Some people
experience little to no pain. For me, it comes in waves. I was diagnosed around
2008, after what we initially thought was just a pulled muscle. But the pain
got worse—so bad at times that I would literally pass out from it.
I haven't had a severe flare since 2015, when a five-hour
surgery forced me to lay flat on my back. That position triggered a brutal
recurrence. Since then, I can't sleep on my back without days of lumbar spine
pain.
My History with Treatment
Back in the day, opioid prescriptions were handed out like
candy. I was told to take 4–5 opioid pills a day, along with very high doses of
Gabapentin. I didn’t follow that plan exactly. I took the opioids at lower
doses, three times a day at most, and they didn’t make me feel any kind of
way—I was careful to use them only when I truly needed them. The Gabapentin, on
the other hand, was prescribed at very high levels, but I found that much lower
doses were enough to calm the neuropathies. Even so, it started affecting my
memory, and some of those issues have lingered. I’m grateful I listened to my
body and adjusted things, especially now that we know how dangerous and
addictive some of those medications can be.
Now, things are more complicated. I take Xarelto for blood
clot prevention, which means I can’t take NSAIDs. Tylenol is technically
"safe," but for me, it might as well be a sugar pill—it does nothing.
Recent Flare and Modifications
For the past two weeks, I’ve been in a pretty severe flare.
I don’t know what triggered it, but the pain hit hard. I had to adapt my
surroundings. My bed is on a platform, which makes it easier to get in and out
of—but it still requires sitting up and bending, which has been tough.
Blessedly, I found a lift chair recliner on Facebook
Marketplace for just $25. My youngest son picked it up, and a friend helped fix
the minor issue it had. It’s been a game changer. I can now recline and stand
without straining my back.
I visited the doctor, got a steroid injection, and it helped
quite a bit. I'm going for lower spine x-rays soon to assess how far the
disease has progressed.
Other Symptoms: Vertigo and Neuropathy
On top of the spinal issues, I’ve been dealing with vertigo.
When it hits, the room doesn’t spin—I just get deeply nauseous.
Sometimes it feels like I’m standing sideways when I’m upright. I’ve avoided
taking meds for it because they make me too sleepy. Instead, I use peppermint
essential oil, which helps. I have little vials placed around my house—by my
chair, bed, desk, kitchen, and bathroom.
Then there are the neuropathies. The extra bone growth from
AS can trap or pinch nerves. Sometimes, it feels like my face is on fire. Other
times it’s a burning hand, stabbing arm, or a foot that feels electrocuted.
It’s unpredictable and exhausting.
I also have degenerative disc disease. The last time I was
checked, I had two vertebrae with no disc left—just bone grinding on bone.
Living with Invisible Illness
Here’s the most important thing I want you to understand: This
is an invisible illness. People look at me and maybe think I have bad
posture. But it’s not just posture—it’s fused bones. I often stand or move in
ways that minimize pain, even if they don’t look “normal.”
It’s not that I don’t want to do things. It’s that I can’t.
Every day is a choice:
- Can I
stand in the kitchen long enough to cook?
- Should
I batch meals for the week or just try to get through today?
- Can I
go to the store—or will I have to pay for delivery (which isn’t easy where
I live)?
Even something like carrying groceries requires careful
planning. Because of my aortic aneurysms and AS, I can’t lift over 10 pounds. I
either use reusable bags with just a few items or get 10 plastic bags for 10
items.
Dog food? That’s another project. I can’t lift a 50-lb bag. So,
I use a scoop and a wagon to move it bit by bit into bins and feeders. Friends
and family help when they can—and I’m so grateful for them.
On Gratitude and Grace
Despite everything, I’m thankful. I’m thankful that I’m not
in pain every single day. I’m thankful that I have support when I need it. And
I’m thankful for the good days when the pain is manageable.
Generally, I live at a pain level of about 3-4 on a scale of
10. For the past couple of weeks, it’s been closer to 9. Thankfully, things are
easing up after the injection—but it has affected my ability to work,
especially my gig work and hustles. I’ve had to pause things like mystery
shopping and inspection jobs that require driving or walking. Sitting has been
unbearable and watching a computer screen
Please, Don’t Judge What You Can’t See
If you take nothing else from this, take this: Just
because someone looks fine doesn’t mean they are. Your friend who used to
be the life of the party? They still want to go. They just can’t.
Be kind. Be patient. Offer help when you can. And take care
of your body. Stretch. Eat well. Go for walks. Hug your loved ones.
Because one day, you may find yourself facing invisible pain
too.
Want to Learn More?
Here are some resources I recommend:
- 💙 The Spoon Theory by Christine Miserandino – A great way to understand chronic illness and energy management
- 📘 Spondylitis Association of America – What is Ankylosing Spondylitis?
No comments:
Post a Comment
Your comments are most welcome.