Changing gears from booky things, I wanted to discuss why I’ve recently had to make a decision about receiving physical affection from friends, family, as well as folks I meet at cons. I have fibromyalgia, and its symptoms are getting worse for me each year. To put it simply, hugging people who aren’t my husband causes me way too much neuropathic pain.
There have been so many times when I’ve felt nerves shoot through my neck, shoulders, and spine from what I assume are regular-type hugs. I’m just too sensitive. And I can feel pain for hours, or sometimes even days later, if I’m hugged the wrong way. (Wrong for my body, that is.)
My husband is a Professional Cait Handler™, and even he knows to listen when I say I can’t be hugged on a certain day. I usually just say, “Put your hands on my bum. My bum rarely hurts.”
But, erm, telling my friends or colleagues to place their mits on my backside is not a particularly appropriate thing to request. (And no, I don’t want you to, either. My butt is dedicated to one pair of hands only. Two, if I ever need a proctologist.)
It would be lovely to receive hugs, but it’s far too ouchy.
So, if you’d like a hug from me, please don’t feel bad if I say no. If we’re good friends, I might ask to hold your hand gently in my two hands. That could be how I hug from now on. Even better, maybe we can do a Jedi Hug, where we pretend to hug from a distance! It’s the thought that counts, right?
I loved hugging, but I love not being in severe nerve pain that much more.
Sometimes withdrawing or not giving consent is because to give consent would hurt too much. And respecting one’s pain is really important. Especially as a woman, since we are often taught to endure physical pain for all sorts of reasons.
Thanks for understanding!
Cait Gordon
Cait Gordon is a disability advocate and the author of Life in the ’Cosmand The Stealth Lovers (September 2019). When she’s not writing, Cait’s editing manuscripts and running The Spoonie Authors Network, a blog whose contributors manage disabilities and/or chronic conditions. She’s also teamed up with co-editor Talia C. Johnson on the Nothing Without Us anthology (September 2019.)
The following article is my personal journey with dealing with fibro and is not to be used as expert medical advice. Please consult with your doctor about how to deal with your health.
This is Gregory, my cane.
I live with an invisible disability. Well, almost. When people see me using my cane, they know something’s afoot. However, there are days when I don’t use it, because I’m trying to build muscle and get stronger. I still experience pain on those days, but no one can see it.
I’ve learned one thing about fibromyalgia–she’s a diva with extra divasauce.
Something was wrong
The diagnosis eventually came in. Fibromyalgia. “Great,” I thought, “No one believes Celiac is real and no one believes fibro is real. I have all that going for me.”
For over a decade, I knew I had an exorbitant amount of chronic pain. I sought physiotherapy to help with some muscular-skeletal issues, but I’d inflame at the drop of a hat. When I discovered I was massively gluten intolerant and connected the dots to Celiac disease (many of my family has it, too), the gluten-free diet helped somewhat in curbing inflammation.
Yet, I was still experiencing quite a bit of pain for someone under 40. “Whatever,” I thought, “I’m able to exercise regularly and am in good shape.” At 40, I was muscular and trim, and looked like I was in my late 20s.
Then came 42. Everything turned upside down. Achy pain turned into shoving burning curling irons into bilateral places on my body and turning on the current pain. What the what? I was also exhausted beyond belief. Cancelling job opportunities and activities with friends became too common an occurrence. I’d wake up each day feeling like I was run over by an elephant.
The diagnosis eventually came in. Fibromyalgia. “Great,” I thought, “No one believes Celiac is real and no one believes fibro is real. I have that going for me.”
Treating a disability no one can see
Thankfully, my hubster Bruce was a believer in my disability. My parents, too. For us, it felt like the final answer to why my body was so messed up. So, at least I didn’t have to push against disbelief from family members. But I was like, “What do I do to treat the thing?”
It’s my body and I’ll cry if I want to
I knew I always had chemical sensitivity and assumed that taking medication wouldn’t help as a solution. Prescription painkillers—I couldn’t tolerate any of them. Over-the-counter Ibuprofen took me down a pain level or two, but not enough to work out. And exercise is was supposedly the ticket to managing fibro. How could I get from couch to there? I felt like I was losing it.
Diet: it’s not just die, with a t
Because I saw the dramatic improvement that the gluten-free diet made to many health issues I’d experienced because of Celiac disease, when my doctor suggested checking for other food intolerances, I was on board. It couldn’t hurt. I did the IgG 200+ food intolerance test just over a year ago. It cost over $300, but by this point, I was desperate.
Gluten-free, vegan, and eaten!
It turns out that besides food with gluten, I had 20 severe food intolerances. The dairy results almost went off the page. Because I’m a foodie, I thought I’d try to reconfigure how I cook my meals. (Yes, of course there were still cupcakes. DUH!)
I felt like my immune system improved somewhat, which made sense, since it was no longer fighting against food, but germs. I also noticed I seemed to have less side effects when taking meds I’d had problems with before (an antibiotic that always made me feel spaced out no longer did). I thought it was my imagination until my doc say it could be possible. Hm.
But I’m not depressed. I’m pissed, but not depressed.
Many of the pills for fibromyalgia are based on antidepressants. When I had depression as a very young adult, antidepressants made me worse off than the depression. I think I’d been prescribed medication back then that was wrong for me. In my case, I needed talk-therapy more than meds. (Everyone is different, though.)
When for a completely different reason, a specialist prescribed me a topical cream that had a hint of amitriptyline in it, I nearly had kittens when I realized it was an antidepressant. But, I followed what she said and had amazing results. I found out that in very small doses, amitriptyline can calm erratic nerves.
Hm. Can it be taken orally?
Turning down the pain volume
Walkies!
I had resisted meds for fibro for so long. The new diet made me feel good and when the warm weather of spring came around, I started walking outside. One kilometre became two, then three, then five. I spent April through July of last year walking several times a week. I’d done it! I was whooping fibro’s butt!
August came. The electric-current high-heat curling iron impalement struck again. I was in agony. I couldn’t walk. This went on for two more months and I was completely discouraged.
Finally, after a pain level 9 flare-up, my husband and my mother insisted I get help. I remembered the amitriptyline. I started on a half-dose for one week, then moved up. Suddenly it was like someone turned down the pain volume. I still felt pain, but not the extra layer of I swear I’m dying nerve madness. I thought, “I can live with achy pain. I’ve done that before.”
Hello, treadmill, my old friend…
I said hi, my treadmill said hi. We hugged. It was a beautiful moment, really. But I started to walk. I dreaded the coming of winter, which always meant more flare-ups. Winter has come, and I am still walking. Perhaps there will be a happy ending.
I also had to undergo a pelvic floor evaluation. The results were that my pelvic floor muscles were very weak. With this specialized physiotherapy I’m noticing a side benefit–building my hips and legs and core will help my mobility further.
Could I run again, perhaps?
And then there was today
I almost fell a few times because my knees pooched out. Today I could not walk without my cane. That’s fibromyalgia: a fussy diva who I can sometimes keep at bay, but at other times she’ll dominate me with her fussy divaness.
After all, it’s a disability, not a common cold. It’s chronic and not temporary.
I’ve the mind that a thousand small victories will add up to one huge one. There will be a day I can run. The day after that, I might not be able to walk. But then there’ll be another day when I can run. I have to keep dreaming and not give up.
If you suffer from a spoonie condition, my heart goes out to you. May you have more good days than bad ones. I know you’re a warrior. We all are. Thank goodness we have each other. Spoonies rock!
God bless.
/cg
Cait Gordon has been a senior technical writer for high tech and government organizations. Her first novel is being sent to the universe. She hopes the universe likes it. (The second book has begun and a third will happen, too!)
Cait Gordon—author and editor 