Where Fibromyalgia & Hemiplegia Meet Head-On…
& Cause One Unmitigated Disaster
How on Earth to describe what has become known to Me as
FIBROPLEGIA… was a Name [that HAD to be] Invented By Me because there is Literally No Word/Words/Names for what I Actually HAVE To LIVE WITH….
I Technically Don’t Have A True Or Full Diagnosis for What My Body Has Done To Me — because it technically doesn’t exist. Except in me… apparently. It Can’t be Explained… It Doesn’t Fit Any “Real” or “Known” True Condition [in its entirety]… At Best, It’s Been Described To Me As “Probably” [basically] Two Things That Co-Existed Inside Me… and the Head-On Crash… Crashed My System.
It’s Co-Morbid Fibromyalgia & Hemiplegic Migraine.
But… For My Formal Diagnosis, It’s Been Downplayed To
“Just” Fibromyalgia in my Notes.
But “Just” using “Fibromyalgia” Does Not Cover What’s Happened To Me. People don’t generally get Paralysed by Fibromyalgia. Nerve problems, yes. Difficulty walking, and feeling drained, and in too much pain to walk, absolutely yes. Pins & Needles, limb weaknesses, of course… But Outright Paralysis(?!)… No, Not On It’s Own(?). I’ve yet to find that in any Diagnostic Material, either.
The Fibro Part Is A Nightmare — Much Worse, Much Bigger than the Can’t-Walk-Or-Feel-My-Legs Part.
Jeezy-Peeps…. THE. UTTERLY. ABSOLUTE. MIND-BLOWING-EXPLODING. AGONISING. AGONY. OF PAIN…Is EXCRUTIATING…..!!! The SHEER FATIGUE & DRAINED LACK OF STAMINA Knocks You Flat… Internal Temperature Fluctuation… Zero Focus…
It Affects My Eyes. My Ears. My Nose. My Clotting Disorder/Bleeding Condition. My Head. My Fingers.
It REALLY Affects My Poor Brain… And I don’t even get Just “Brain Fog”… Because of the Psychological BS I’ve been through, The Traumas Sustained over the last 30 years, the UTTER AGONY and the psychological effects it has on me… I Get Severe [Traumatic & Otherwise] Amnesia, Short-Term & Long-Term Memory Problems, Alongside the FibroFog — And I got the memory issues that may rarely come with taking Pregabalin (it didn’t take too long for it to start, and it never got any better), to add to it, too.
But. There’s. MORE…
I Can’t Move My Legs (and you know That’s True when there’s a Gods-damned Arachnoid on the floor and you can’t move, or move them, till you Physically Move them With Your Hands and pull yourself backwards or onto the stupid bed!)
I Can’t Feel My Legs (I figured that out when I found fresh (as in hot, just made) lemon tea all over them, and never knew till I saw the carpet was wet around me — the water was HOT when I touched it with my hands… But — My legs, the skin, all of it Hadn’t a Damned Clue… Even hair doesn’t grow there anymore…).
Can’t Feel Or Move My Hips — Except One Small Section of Glutes on the Left Hand (non Hemiplegia) side. (see also story of eight-legged monster above…[!])
I Cannot Feel or Control My Bladder, or Bowel – I’ve ended up having to have a Suprapubic Catheter, in the end. The Bowel thing is just… Literal Random Cr*p — Takes several days to go, and even then it takes Gravity to do anything cos no peristalsis or other muscle control to help it along.
I Lost My Core Muscles & Anything from the Upper-Chest Down, including the ability to properly control my Diaphragm (myself; consciously) — So. There. Went. My. Singing. … I literally want to sob all over again just writing that down… (This Was After I was Hospitalised & Treated for Strep & Staphylococcus [aka The Ocuccuses”]- as well as “Horrendous” [Hospital Doctor’s Words] Bowel & Bladder Infections)
I Lost Almost All Ability to Feel Touch from Others /Things … And This Is As Well As Being Able to feel myself touching others and other things. (Also from the same time as the Ococcuses, and seemingly continually getting worse, exponentially)
The SPASMS I get, though… OFF. THE. CHARTS. AGONISING. Well, they are if and when they reach the parts that actually Register — going up my back, around my chest, and upwards. Though why THEY get to have at least SOME say over my muscles and I do not, is just Utterly Bizarre and freakishly Absurd…
So. I Got A[n] … Opinion…. From a Proper Neurologist.
Well, it couldn’t be a “Second” Opinion, because I’d never had one in the first place. Just some idiot Rheumatologist poking at me with his finger and afterwards going, “Yeh, Fibromyalgia, worst case I’ve seen, especially in someone SO YOUNG…“. Then Leaving It At That. That’s not Really an “Investigation” into the Extent of my Symptoms, is it?… Just. Poking At Me…??
& Nothing further, your Honour……
After spending a LONG Time Conversing with the [Walton Centre-based] Neurologist, his confused expression finally cleared as he came a a conclusion that he felt might be The Only Logical Conclusion That Could Be Made, with the information of my ENTIRE LIFE that was given. (I’ve seriously told less to my therapists over the past 30 years – and I’m NEVER at all shy to let them know precisely what my life is like and been like!).
He asked me when my Migraines stopped… Which was about the time I left school, or just before (I don’t remember having any migraines in the last 6-ish months of my stay in the Adolescent Unit and onwards, approximately age 16). And he Pointedly asked when I’d had my first Paralysis. I was Just turned 17.
“Ever heard of Hemiplegic Migraines?” … And he goes on to tell me All About Those. Well… Wasn’t THAT a Freaking REVELATION…
The first time I’d had that Paralysis attack, I got told by That [old-fart grumpy arse] “Neurologist” I had… Hysterical Paralysis… Yep. a Freudian-Nightmare Imaginary “Diagnosis” that Doesn’t Actually Exist [WTELAF Dumbass Hospital?!!]. Because I’d only been “released from the Adolescent Mental Health Unit a year” (give or take the odd word and excuses). And Then They Cheerfully Threw Me Out with a referral to the [utterly laughable] Adult Mental Health Services. At Just 17yo.
Turns out… Not so much Hysterical as Hemiplegic…
I Didn’t Even KNOW of or Ever HEARD of, Let Alone Known I’d Ever HAD, Hemiplegic Migraine. I thought My MULTIPLE Occurrences of Temporary Paralysis [over the previous 20 years, as it was by the time I saw the Neurologist] was somehow maybe caused by some kind of nerve damage I’d probably inflicted on my spine (and maybe my brain) when I had a Serious Horse Riding Accident at 16yo – Just about only a month after my birthday, no less.
It happened in the Easter Break of my last year at “School” [read: Adolescent Mental Health Unit’s On-Site Education “Department”]. It was an Accident where I actually Wouldn’t Let Them Treat Me Properly For at The Hospital. By this time, even at 16yo, I’d had more than enough share of being Mistreated by Doctors. The Previous Five Years Alone Had Been Beyond Hell On Earth… I NEVER Wanted Doctors ANYWHERE NEAR Me Again, if I could help it.
I didn’t think it was Serious.
Not that anyone else took it seriously, either, mind you. It’s only NOW [well, as an adult with Common Freaking SENSE] I realise HOW BADLY the situation was handled, and it was never presented to me as it should have been – A Serious Horse Riding Accident.
The Horse Took off at a Fast Canter around the ménage during a lesson, because a Bunch of Gods-Damned Chickens were out in the bloody Yard! I was Too Shocked To Think Or Even REACT.
I Fell Off the Horse (15h or 15h 2-ish if I remember rightly) backwards — First onto the Back Of My Neck. Then, The Bottom Of My Spine (where I’d already had damaged discs diagnosed at age 13). And I Lost Consciousness – Maybe for a minute or two, maybe more. Not very long, though.
But I WAS in A HEAP on the floor of the Ménage, in PAIN. With a Skull Cap on but No Body Protector. What did my NURSE Mother and the Instructor do? No, Not call an ambulance. Not tell me to stay still till the Paramedics came. They got me to GET UP. See HOW I WAS Managing. DEBATED taking me to Hospital A&E.
OF, FREAKING COURSE I had ABOLUTELY NO IDEA I was actually in A Serious Horse Riding Accident.
Time Would Tell The Effect This Would Have. And It Was A BIG One.
I Discharged Myself as soon as they threatened to Keep Me In for observations – they could see I had a Concussion [minor as it gets] Head Injury. They got a gritted-teeth promise from me to wear a foam collar almost bigger than I was, for two weeks straight. All hours of the day, except sleeping. I wasn’t even really 5ft standing up really straight, and “rehabilitating” anorexic, so there wasn’t much of me, and I don’t think that collar was a paediatric one, whatsoever. It was a nightmare, but I did it. But it didn’t make my Concussion any better.
In the end, had to suffer that Severe Concussion for TWO Months… An AGONISING Amount of time to Wait to Literally Get Back On The Horse. Any Horse. I even got back on THAT horse. More than Once. People say you should get back on right away – but not only did I have to wait to do that (again, literally), I was itching to get back on; I’d not gone that long without riding a horse since before I started doing it(!).
There was specific things like Severe Back Pain I’d Never Had Before, even though I’d suffered with them already for the three years before the Accident Itself. It easily raised those pain levels from about a 5 or 6 at worse, to an 8-9 Permanently, which was my constant growing up, but then got much worse as an Adult (enough to get me hooked on painkillers for several years).
It was either About, or Just Under a Year Later when I had my First
Paralysis Hemiplegic Attack — and I did think it might have been a long-time coming reaction to that Accident, even at the time. And it probably Was — Just Not The Kind I Was Thinking Of.
I’ve been like this for More Than Five Years Now (probably closer to Six) – Paralysed. It’s been about 4 1/2 since The Ococcuses Took the Rest Of It Away.
On the other end of the Scale there ARE…. Some [Small?] Silver Linings:
The First Time Since then that I didn’t really have Pain in my Lumbar Spine… Was when the Fibroplegia got its evil paws on it and deadened it For Good. Haven’t felt it — or anything else — since (Silver Linings…!). It was the First Time in 20 years those discs hadn’t left me in bucketloads of pain — So, at that, I have to definitely concede that there are definitely Swings & Roundabouts to this Paralysis thing… [!]
The requirement to use a Wheelchair Means I don’t have to endure the pain of walking I ALWAYS had, from I was 13yo, right up until I was about 36yo and I lost the use of my legs entirely.
It also means I can go faster than pretty much Every One else (with feet), get the “good” parking spaces, and the discounts & freebies when going places (well, it’s not like PIP Pays Well, anyway!). People Do Listen A Lot More, Give You Leeway, Are Generally Too Scared Of Being Seen As “Discriminatory”.
I literally Chased Medical Personnel around half the ground floor of A&E when they Tried To Ignore Lolli once, when she needed Emergency Brain Surgery at a [different] Specialist Hospital… I chased them down and sat outside their offices [guess who doesn’t get tired feet or back anymore] until they spoke to me, then they didn’t want to say “no” to the Girl In The Wheelchair (Yep, I am FINE With Milking It Like A Cow, if it gets me what I Need…!).
I can wear HEELS and they’ll never hurt…! [Hello, Platform Goth Boots!].
I can sit in Queues for long periods without really having to care.
I bring my own chair everywhere, and my Kushtie is THE BEST in the house, wherever he goes!