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March of the Internet Nobody, Day 2: The return of Spoon Woman…

Right then, day two of my self-imposed, for-no-particular-reason, blogging marathon. 

So, I was trying to decide what to do today; a bit of photography, some sort of fiction, a spot of musical composition, or how about some poetry..? 

Then I realised I have some updated news on a previous post, one which generated some very helpful advice and kind words of support for my wife, the superhero.

As I told you in that earlier post, Rhonda has fibromyalgia, which she has been treating with a prescription drug called Cymbalta for nearly ten years. As with all medication, it has its pros and cons, including some nasty side effects and natural immunity, depending on the individual patient, but the choices are limited when treating this under-explored and little-understood condition so until recently she had stuck to the devil she knew, upping her dose slightly to compensate for an increase in her pain levels midway through last year.

Then the inevitable happened.

The continuous long term use of the same medication finally reached saturation point at the end of 2016; Rhonda became hypersensitive to cymbalta and decided that she was going to take herself off it. So you can imagine (except you probably can’t) how much fun her Christmas was, but as I’ve come to expect from Spoon Woman, she took it all in her stride.

Over the ten day holiday period, (when I was off work, but Rhonda had to work several shifts at the chip shop) my amazing wife put up with the unpleasant withdrawal symptoms, the dizziness and nausea, plus the sudden increase in pain as the medication left her system completely, until she was finally free of the treatment that had become a trauma. Then began the search for a replacement, for something Rhonda could use to control the symptoms of fibro, without the harmful side effects of pharmaceutical drugs. 

Surprisingly, we found the solution in our local branch of high street health food emporium, Holland and Barrett; a £20 bottle of CBD oil. Often mistakenly described as “cannabis oil”, CBD oil is the non-psychoactive substance found in many strains of plants in the hemp family and has no recreational properties whatsoever and is completely legal in the UK.

There have been plenty of studies carried out which suggest CBD could have near-miraculous therapeutic powers but my lack experience with fibro hadn’t prompted me to think of it earlier. Rhonda, however, has researched her condition extensively and was already aware of the possibilities inherent in this natural supplement, so we sought it out.
After having partial success with a “crystalline isolate” that we ordered online (a very concentrated form of CBD, extracted and crystallized synthetically) we stumbled upon the real McCoy in the aforementioned retailer, supplied in handy dropper bottles, whilst on a family shopping expedition.

The dosage Rhonda decided on was three drops, twice a day, which she began taking the day we brought it home, which was when she discovered the one downside; the taste. The most memorable description so far was; “Like licking old motor oil off a dog turd”

But the results, well they were something else. 

Within a week of first taking half a dozen drops of this relatively cheap food supplement oil per day, Rhonda told me she already felt better than she had before Christmas. Two weeks later and she was feeling better than she ever had, in the whole time she’d been taking cymbalta, the “official” treatment.

Now, a mere two months since my superhero wife weaned herself off her own personal kryptonite, Rhonda looks happier and less tired, smiles and laughs more often and tells me that she has “some days when I actually feel GOOD” and that in itself is miraculous as far as I’m concerned.

So if you’re a secret superhero and you are wondering if CBD oil is worth a try, take it from Spoon Woman, it’s worth it.

 
3 Comments

Posted by on March 2, 2017 in Blogging, Personal anecdote

 

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So I married a superhero…

By now most of you know that my wife, Rhonda, is American, but what you may not know is that she’s also a superhero.

She is Spoon Woman.

When I got to know Rhonda, over five years ago now, she was just another American I could playfully wind up on Facebook. She was introduced to me by a mutual acquaintance and we soon became good friends, finding common ground in politics, music and literature, amongst other things. 
Even more amazingly, she shared my sense of humour and found my first forays into the writing entertaining, saying nice things about blog posts I sent her and generally coming across as one of the more sane and well-balanced Americans that I’d met, during my initial exploration of the internet in general and Facebook in particular.

She also told me she had fibromyalgia.

Ok, I’m guessing that if you know as much about fibromyalgia now as I did then, you’re probably reaching for a dictionary, or more likely opening a new window so you can Google it. So let me save you the trouble.

Have you ever pulled a muscle, or had cramp? 

Of course you have, everyone has had those “Uh-oh!” moments, the ones that result in you suddenly hopping round the bedroom at two in the morning, swearing your head off and trying to straighten your toes. Or that horrible sensation in your back when you try lifting something just that fraction too heavy and realise too late that you’re going to be wincing every time you bend over or get up from a chair for the next week.

Well, imagine that feeling, but all over your body.

All the time.

You can’t, can you? You literally cannot imagine it, because your brain quite rightly won’t allow you to synthesize that experience, any more than you can really remember just how bad toothache is. There is a failsafe in your brain which stops you experiencing pain, except when it is received as the kind of emergency warning signal that it’s designed to be.

If you put your hand in a fire, your brain tells your hand that it’s in pain, because that’s the quickest and most effective way to get the idiot who put it there to take it out.

Except that isn’t quite right. What’s actually happening is the nerves in your skin are telling your brain that your hand is burning and your brain, in reply, is telling your hand that it’s in pain.

But what happens if your nerves tell your brain that your hand is burning, even when there is no fire? What happens when your nerves tell your brain that your whole body is burning?

Put simply, Fibromyalgia (or “fibro” for short) does basically that; it causes neural transmitters to constantly send false positive pain signals to your brain, resulting in permanent, chronic and sometimes seriously debilitating pain, everywhere at once, all the time. The very idea of it is terrifying to me.

When Rhonda first casually mentioned her condition to me, during a chat on Facebook,  I didn’t quite know how to take it. I mean, here was a woman who looked after her daughter on her own and ran a special needs residential care home and seemed to work eighteen hour days, almost every day; that didn’t seem like someone who was in constant pain to me.

Maybe, I thought, you can just have “mild” fibro, perhaps it wasn’t all that serious after all. But that only went to show how little I knew of Spoon Woman’s abilities.

Rhonda once told me; “There are three ways fibro can affect you; you can let it take over your life, just lay in bed and give up; you can moderate your lifestyle to alleviate the impact it has on you; or you can just get on with it. I decided that I was going to just get on with it and I wasn’t going to let it affect my life.”

I was awed by her attitude at the time, having never met her in person and only having known her a short while, but I just accepted it and thought no more about it.

Fast forward a few years, she and Audrey are here in the UK, we’re married and Rhonda is working full time at the local chip shop. A dream come true.

Except that isn’t quite right. Dreams-come-true don’t usually feature constant pain, at least mine never have.

You’d never know to look at her, that Rhonda was anything other than the perfect loving wife and doting mother. She cooks, she cleans, she does laundry like there’s no tomorrow, anyone would think she was addicted to housework. You’d never know she’s in discomfort, that her myofascial tissue is screaming blue murder and her skin itches so badly she wants to scratch it off. You’d never know the muscles in her back are locked into solid knots, so bad she has to lie on a deep tissue massage roller in the evening to release the pain, or that she has hypersensitive pressure points on her skin that can deliver bolts of agony if touched.

You’d never know, because she is Spoon Woman and she knows how to best use her spoon supply 

When I was going through one of my regular fibro Q+A sessions with her the other day, Rhonda asked me if I’d ever heard the spoon analogy. Funnily enough, I hadn’t.

Imagine you have a finite supply of spoons and you need to “spend” a spoon in order to have the energy to do everyday activities: 

Get out of bed – one spoon. 

Take a shower – one spoon. 

Get dressed – one spoon.

Get the kids off to school – one spoon.

Drive to work – two spoons. 

Find somewhere to park – one spoon, etc etc…

The secret is, to portion out your supply throughout the day, so that you don’t find yourself out of spoons when you still have stuff you need to do. And, like the energy boost tokens you pick up in video games, extra spoons may be obtained through napping.

Naps are sacrosanct in our house, I’ve learned to respect the power of The Nap. And I collect spoons, too, in my way. 

If I see laundry that needs doing, or if I can take Audrey out and leave Rhonda to nap in peace, if I have time to do the housework before she gets home from work and insists on getting the vacuum cleaner out, then that’s one more spoon I’ve saved for her, so we can enjoy the times we have when we’re all here together.

I’m still awed by her, my superhero wife, now more than ever, as I learn more about what she has to deal with, every hour of every day. Because, like all of the other, secret and silent superheroes with “invisible” illnesses, to look at her, you’d never know.

{To read about the origin of Christine Miserandino’s  Spoon Theory in full, GO TO THIS LINK}

 
27 Comments

Posted by on December 2, 2016 in aardvark, Blogging, Personal anecdote

 

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