Norb Aikin – My Roadmap To Fibromyalgia: Everything, or Nothing; and sometimes both.

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Norb Aikin – My Roadmap To Fibromyalgia: Everything, or Nothing; and sometimes both.

When I was growing up, we had a clawfoot tub- no shower- and while it was inconvenient at times, it became very comfortable to relax in. After a long day of wrestling practice, or biking across town to play pickup football with my friends, a nice long hot soak was the perfect remedy for my taxed body.

 

And my mother would occasionally warn me: “You’re overdoing it. Your body needs a break.” Or something like that.

 

Did I listen? Hell no, because I thought I was indestructible! And playing various sports and busting my ass was the best way at the time to prove I was worthy as a person. I earned respect from people who’d previously derided me for one reason or another based on my personality. I gave them a reason to take another look at me.

 

Fast-forward to 2012…after suffering through a bad breakup and finding myself homeless, I moved halfway across NY, where a friend was able to secure me a place to live and access to the Mental Health care I truly needed. It was hard to find in Buffalo, based on my lack of resources and energy. I was alone…too alone. So I moved, lost an abundance of personal possessions along the way, and ended up in Cortland…where I promptly destroyed my ankle being stupid at a party I’d never be invited back to.

 

I dislocated and fractured it, and tore all the muscles around it. I had a plate and seven screws inserted and spent plenty of time with a plaster cast, crutches, and eventually a boot. Three surgeries later, I still have a slight limp from it. Couple that with basically being alone in a town full of strangers, it made perfect sense to address my MH needs and concerns. Depression (which I believe I’ve suffered from as a child), Insomnia, and Anxiety were promptly medicated by a great doctor who really took time to get to know his patients- and that’s crucial in my opinion. Find a doctor who cares; you’ll be set.

 

Once I got out of the boot and could finally wear sneakers again, I was ready for my life to change back to the normal me I was before the accident. But there was a burden I had to get over…being basically bedridden and ashamed about the state of my body meant going out in public for actual things like buying real groceries instead of living off of drugstore foods from across the street meant mental preparation for the true outside world. And that’s when it hit me…not in a mental “aha!” way, but a physical wake-up call by my body rebelling against my intentions and itself.

 

After convincing myself I’d be ok to take a bus to the other side of town to the supermarket for some dietary staples I couldn’t get in my immediate vicinity, I came home satisfied that everything I purchased could fit in my backpack and one canvas shopping bag. And for the first time in a while, I slept well. Waking up was a different story…I was cramped up everywhere. Starting with the slight fog I experience each morning from my Insomnia meds, both sides of my neck and my lower back were practically locked up. My hips felt achy and fragile (as if putting weight on them would turn them into dust), and forget about leg usage. My thighs, quads, and calves were tight beyond anything I’d ever imagined. All I could do, as a late-30’s man, was lay in bed and moan for a little while until I could get myself to feel like I’d be ok standing just enough to go to the bathroom. It was terrifying; so little an amount of movement could lock up my entire body.

 

Luckily, I had an appointment with my psychiatrist that week, and my muscles eventually eased up enough to be somewhat functional in public. I mentioned to him my situation, and he said “You’ve been out and about, so it’s not Atrophy. You do probably have some Arthritis issues, but Fibromyalgia is very likely in your situation…ask your primary doctor about it.” So I did.

 

At the same time, I was fighting for Social Security Disability benefits for my mental health issues as well…a Fibro diagnosis would only increase my chances of winning. How sad and miserable is your life that you’re rooting for a chronic, sometimes painful, affliction to render you basically useless and worthy of the government paying you back all the lost wages for five years and the money you paid via payroll taxes for Social Security benefits? But my PCP had my back…he said straight out he didn’t know much about Fibro, because no one knows much about it. He went through the paperwork drawn up by whoever decided what the standards for it were, and he tested my main trigger points. Again, I’m not proud that I passed the Fibro test with flying colors. Then came the med adjustments, the trial and errors that come with it, and the mental acclimation (which, no matter how much you prepare for it, does not come easy).

 

My SSI/SSD hearing was interesting, to say the least. After bussing from Cortland to Syracuse (a city I’d only been to as a bus conduit to Buffalo, spending time in the Greyhound hub), I had to find the proper building. I was by myself and somewhat lost, which acerbated my feelings of anxiousness. By the time I got in front of the judge and panel for my hearing, I was a sweaty and shaky mess with a voice only slightly above and more coherent that more recent Tom Waits’ gravelly growl. Yay Anxiety and my tightened-body Fibro!!…I guess.

 

But I won the case and was declared officially Disabled. I’m still processing those feelings and the wonder of it all. It got me off of Social Services protections, where I was living in basically a boarding house room for no charge, to a public housing high-rise one-bedroom apartment. Great! But the physical and mental acts of furnishing this place have often been a struggle. I only have so much energy. I only have so much patience (which has been a lifelong problem for me). Some days I look around and think about all the things I still have to do, and it’s been nine months in this apartment. Other days, I’m content with getting out of bed almost symptom-free.

 

Speaking of getting out of bed, that’s another Fibro Fun Festival! I usually lay there once I first wake up, trying to assess if it’s too early to get out of bed. And if I’m lucky enough to fall back asleep, it’s usually easier to wake up and determine after a few minutes which parts of my body hurt the most and need the most attention. Some days it’s my neck and shoulders; others it’s my hips…and I’ve had mornings where I strained both calves just rolling over to get out of the damn bed. That’s definitely not cool and not conducive to a good day, lemme tell you that.

 

But having this disability has given me an ability. I’m more able to focus on the present than the past, and when I’m able I can devote more time to writing and doing the things I love. I have better access to stress relievers, I can plan my days to how my body feels, and I’ve been lucky enough to be selected as a published writer by Eliezer Tristan Publishing…my book, 100, is available everywhere basically. And that has changed my life for the better, no doubt. Everyone has been great to work with, and the responses I’ve gotten have truly been incredible.

 

It doesn’t cure me or make me whole, by any means. I’m still a troubled guy who’s been though a lot and has a lot more to add to this story of my life and living with Depression/Anxiety/Insomnia/Fibro. It’s been just over a year now since my proper diagnosis. I’m in the learning stage…what my limits are, and what I can and can’t do.  And I’ve always been a limit-pusher, but learning to deal with the consequences of Fibro is something I’m trying to work my way through. With so little information and not many accessible books about it, the average Fibro patient is on his or her own. Doctors try to figure it out, but they’re too busy curing common colds and treating things they know. It takes a truly compassionate doctor to understand your words and your pain and your struggle. And know that you’re not alone…I can’t do a lot of the athletic things I used to do. I long for those days, but I have to be smart and know my body isn’t gonna support me the way it used to. I’m trying not to let it get to me, and there are times when I think I’ve beaten the mental drag-downs…yet it still comes up with one more. It’s a game of one-upsmanship sometimes with this mind, and I know It’s not healthy. I know now that I have to do what’s best for me.

 

My whole life, in anything I’ve ever been involved in, my brain reverts to an “All or Nothing” state. With Fibro, it’s more like “Everything or Nothing”. You can do it all…but it’ll cost ya some days. Or you can do nothing, and then people wonder why you’re not around or aren’t able to do things for them. That’s the unfortunate gamble my body goes to the casino with for me.

 

Perhaps it’s fitting, living the life I did growing up, that I ended up here, arms tired from typing and knowing tomorrow I’ll wake up feeling like they’ve been squeezed by vice grips. My head will feel the same, but with something else to contemplate. The things I still have to do to furnish my apartment will sit and wait until I’m ready to do them right. My original psychiatrist was like “You’re all or nothing”…and that’s been my life’s theme; I’m either all-in or not interested at all. My body’s catching up with that, and I’m figuring out how to be ok with that.

 

Chronic Trip

 

My body is a road map of natural disasters.

Hurricane hips, shoulder mudslides,

calves of drought, and a head

that doesn’t know if it’s comin’ or goin’

in whiteout blizzard conditions.

Along the way I stop at tourist attraction pills

to gas up the tank and fix the flats

but the luggage rack’s a little shaky

and locals never seem to like me.

The journey of a hundred trigger points

starts with the first flare-up,

where every day is a new discovery

of what hurts the most.

 

Norb Aikin was diagnosed with Fibromyalgia at the age of 41 after years of random chronic pain doctors didn’t have an answer to. His first book of poetry, 100, is available now through Norbaikin.com and Eliezer Tristan Publishing. He’s a diehard supporter of everything Buffalo even though he’s been displaced in Cortland, NY.

By | 2018-08-10T19:21:13+00:00 August 10th, 2018|Categories: Uncategorized|0 Comments

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