I live with Ankylosing Spondylitis (AS), or Axial Spondyloarthritis (AxSpA) – the two names represent the same disease. AS is a systemic disease, which means it can impact multiple joints as well as organs. Fatigue isn’t an organ or a joint, but it is a big part of living with AS; a part that doesn’t get a lot of attention.
AS is characterized by inflammation throughout the body, which causes pain. Our bodies are busy fighting this inflammation and pain all the time; when we’re at rest as well as when we’re active, which is exhausting to say the least. Fatigue is a result of our bodies working overtime to fight constant inflammation; our body’s response to its own attempts to save us from ourselves.
Note: that paragraph above is my hypothesis as someone with the disease – it’s not something I have researched or proven.
I managed to write the following during one of the worst fatigue flares of my life. I focused all my attention on channeling the fuzzy thoughts in my head through my fingers to the keyboard on my phone instead of allowing myself the rest my body was begging for. I felt it was important to get the experience down in the moment so I could look back later and understand what I was really feeling. I wanted to document the truth so I would believe what I truly go through, because it’s so easy to question and dissociate from such things after the fact.
After writing it; and trust me, it took much longer to write than it will take for you to read it; I nearly lost consciousness because I had pushed too hard against the fatigue to write it. I wrote it not just for me, but also for a friend to understand, never expecting I would eventually want to publish it for others to read.
The reminders of that night are why I chose to share it here, with you. Why? Because I want more people to know what goes on when our chronic bodies collapse. And because I want others with AS to be able to share this with their friends and family so they can understand more what we experience when the world isn’t watching.
To my AS family: sometimes the words of a stranger – someone who’s not close to you – can make a big impact in how your loved ones understand the severity of what AS can do, and it takes the impossible feeling away from you trying to explain all alone. And reading someone else’s words who’s going through the same thing can also make you feel less alone.
Note: I have edited this by fixing misspellings, adding punctuation and spacing, forming paragraphs, and adding clarifying words to make it readable. I have not removed or added content or meaning. Other than that, it remains exactly as it was the night I wrote it.
None of it is exaggerated.
I become chilled as if I have the flu and my muscles stop working, so I’m limited to being stationary and in a comfortable position in bed or a reclined position elsewhere. My body puts all its energy toward the one thing I’m doing in that moment, like right now all my energy is focused on my hands typing; every other part of me is immobile.
I can feel each heartbeat throughout my body and I am lethargic. My top layers of skin kind of tingle with energy and warmth.
Also, it happens very suddenly. I have no control over it when it starts, so I better be near my bed or home.
And I move extremely slowly. And it’s difficult to process incoming information or put words together to explain what’s going on. It takes so much energy to think. I feel as if I’m existing in a shell I have no control over, as if I’m paralyzed and have the ability to make just one wish at a time about which part of my body I want control over.
When I take a breath it’s as if someone else is breathing.
I can look at my cat and just see a shape and it’s almost as if I can no longer see in 3-d accurately, more like an alternate reality somewhere between flat 2-d and 3-d. My consciousness is there but really weak. And I have to fight to understand anything I visually see.
Even if I know I’m in a position that is usually uncomfortable I have to stay there because it takes so much energy to move.
It’s beyond brain fog. It’s fatigue fog. It’s f*cktigue.
It’s body preservation by shutting off other systems, in the same way that a smart machine – like a computer – shuts down a problem area so it can function long enough to be repaired. Or how an airplane that loses an engine can fly on another engine for so long, but isn’t fully functional.
But being in a body as it shuts itself down, puts itself to sleep, hibernates while the owner is still awake, is a humbling feeling.
Couldn’t talk if I wanted to.
Too weak to lift up my phone to take a selfie to show my exhaustion. If I try my hand trembles and tingles with attempted energy.
Can’t lift my head up and sometimes it falls backwards without warning and I don’t have the strength to catch it. So it stays there looking at the ceiling with my neck at an odd angle. I better hope I’m near a pillow.
I hope I don’t have to pee because that would take moving mountains. Where’s the diaper?
The cats are hungry.
Every five seconds my eyes roll up to look listlessly at whatever’s in front of me, but nothing registers.
I’m just trapped inside this body that I can’t make do anything.
Pain. I don’t have pain relief. And when I’m this weak the pain vibrates more intensely.
I want to sleep but I can’t – my brain is desperate to keep working because my body won’t. It’s where I have my most ‘Aha!’ moments, while my brain is trapped inside a broken body.
And I can’t sleep because of the vibrating pain and overwhelming fatigue.
I want someone to come hold me, carry me to bed, tell me I’m still human.
If you are able and would like to share some excess with me this season, I’d love a $3 tip at ko-fi.com/beingcharis. You can count on it going towards my survival, as I live in extreme poverty.