The Chronically ill Creative

Look at how many fingers she has! What in the AI craziness is this???

I was very ignorant of just what fibromyalgia was before I was diagnosed. In my ignorance, I thought it was just that folks with it hurt when you touched them. So, as long as you kept your hands to yourself (as you should!), they would be ok.

No. Not even a little.

I had no idea that fibro is what I had the day I was diagnosed. I had called my doctor, who had recently diagnosed me with Hashimoto’s Thyroiditis, an autoimmune disease of the thyroid. It causes massive fatigue. We’re talking 16-hours-of-sleep-and-still-exhausted level of fatigue. After being medicated for that, I was still having bizarre symptoms. I had pain in my joints, but which joint changed every day. One day it was my wrist, the next day my ankle, the next day my hips. When I called my doctor, she said, “You could see a rheumatologist, but I think it’s just age related.” I was 45.

I made the appointment with my rheumatologist. When I went in, I was in a wheelchair because walking distances from just my car to the exam room was too much. My legs would give out after just a minute or two of walking. My old doctor said that was due to damage done to my spinal cord from a prolonged period of low B12. I was diagnosed with that at 44. My health RAPIDLY declined that summer, and I went from waking unaided to needing a rollator and wheelchair in the course of just 1 month. Every blood test you could imagine took place, and it all turned up nothing.

When I explained all of this to my rheumatologist, he said, “I think what you have is fibromyalgia. Unfortunately, people with a severe case of it lose their mobility.”

Oh.

Yay.

And the hits, they kept on coming.

Here is the list of aches and pains that are common with fibromyalgia, in my case.

Persistent, widespread joint pain, joint stiffness (especially first thing in the morning), sensitivity to touch, brain fog, slowed ability to communicate (like your brain needs a few moments to make the words come out of your mouth or think of the word for simple things like “spoon.” I usually stumble through with, “You know? The thing you use to put food in your mouth. Not the pointy one. The round one.” Circuitous, but it gets the job done) migraines, muscle weakness, muscle spasms, costochondritis (pain in the cartilage and tendons that support the rib cage), interstitial cystitis (painful bladder spasms), intolerance of temperature extremes (the changing of just 20 degrees in a day is enough to trigger a flare up), skin pain and redness if exposed to the sun (even through my clothes), fatigue, memory problems (I can forget whole conversations I had just minutes prior, but can tell you what my best friend wore on picture day in ninth grade), inability to regulate body temperature, IBS, Reynaud’s Syndrome, blurred vision (there are days that I can’t see much at all), loss of balance, loss of my voice, insomnia, overstimulation when it comes to noises or the sounds of my environment, depression, anxiety, dizziness, clumsiness, and numbness and tingling.

I’m sure I’ve forgotten some, but you get the point. It’s a lot. And, contrary to anything Dr. Google tells you, fibromyalgia does get worse over time. It won’t kill me, but it will continue to make my life miserable. Medication slows it quite a bit, but it doesn’t cure it. It just makes the pain bearable. Mostly.

To combat all of this, I play little games that are supposed to help keep my brain healthy. I have braces for just about every joint in my body, including walking casts for when my feet hurt so badly I can’t put weight on them. I even have a neck brace for when my neck decides it can no longer support my head. The last time my neck did that, it took three weeks for the muscles to stop spasming and do their job. I still have a rollator that I use when I am out and feeling strong enough to walk short distances but there are no options to sit down where I am going. Daily, I use arm crutches to get around most places as long as the walk isn’t lengthy and there are places to sit and rest. I have the wheelchair for everything else. I can drive on good days, but I won’t drive if I don’t feel it’s safe for me to do so.

I never know from one day to the next what I am going to feel like. Keeping a close eye on the weather can help me plan for the possibility of a flare up of symptoms, but it doesn’t always help. If I did too much housework the day before because I was feeling okay, I could be out of commission for three days regardless of the weather or temperature. It makes planning anything a challenge. Almost every engagement with me comes with the caveat that I might not be able to hold up my end of the bargain, and I won’t know that answer until the last minute.

Flare up days are the worst for me. They can last from a couple of hours to weeks long. I can’t do much of anything except lay on the couch. That makes this creative absolutely stir crazy. I need to DO things. My housework suffers because I can only tolerate so much movement in one day without triggering a flare up. My relationships suffer because I am not always able to be present for birthday parties, school programs, or even holidays. My mental health suffers because I had dreams that are just not able to happen because my body has betrayed me. I feel like a burden to my family and friends because I sometimes can’t make my own dinner plate, shower on my own, or help out with much. It’s a tough day when your husband has to bathe you because you need your hands to hold up your head. He assures me that this is what he promised the day we married, but it doesn’t erase the shame and uselessness I feel because he has to. It doesn’t erase the shame and embarrassment I feel when my relationship with my adored nieces suffers because I’m just not there a lot of the time. It doesn’t erase the shame I feel when my own adult children have to step up when mom can’t wash the dishes, run the vacuum, or potty the dogs.

But, through it all, I try my damnedest to not let fibro get me down. Some days are easier than others.

To sum it up, fibromayalgia is a pain in the ass.

Literally.