About Me

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• Gamer, Geek, Techaholic, Coffeeholic •

• Unofficial Tech-Support & Web Admin•

•Former IT Consultant: Data Analysis•

• Former Singer/Songwriter & Performer •

• Occasional Writer & Blogger • Autistic•

• Fibromyalgia Warrior • WheelChair Whizzer •  

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After spending the first 22 years of my life in North Wales, I came to London in 2003 – a birthday present to myself in the hope of actually getting a job and enjoy performing & singing in the West End.

I spent just shy of 13 years there… Before having to leave being effectively Forced Away… because of the Inconceivable PAIN I was then in and the Complete & Utter Lack of healthcare support that North East London Foundation Trust was forcing out onto all its patients.

I now live back in North Wales, within the Snowdonia Valley,  with my dog Soul – a gorgeous Staffy Mixup rescued from outside a pub in Angel, Islington from someone who was badly neglecting him.

I used to be a Data Analyst & Database Administrator

I loved my job, loved computers, databases, systems
& analysing and fixing them.

I really did fall into it accidentally — after abandoning my on-off near-10 year “career” as a Health Care Assistant/Nursing Assistant, I had NO Idea What To Do; my Mother & Friend, however, Had Their Own Ideas: Specifically — Admin. But when I was looking for Job Ads there was one that said “Researcher” — that job was my first Foray into working with Computers, and the valuable lessons learned form that helped my career take off.

I was a Specialist DQA IT Contactor [Data Quality Analyst] for Many Years after that, specialising in Migration Data Sets and New Databases…
Even Very Early On, I got GOOD Job Contracts… I Mean… I pretty much Keeled Over when In One Position, I Realised that things had come along so much, so far, so fast, that I wasn’t Just the Analyst anymore… I was Essentially Lead Data Manager (which was an effective way of saying Project Manager).
I was the “boss” of someone with an actual-honest-to-Gods MASTERS Degree In Computer Science(!).
The CEO of London Branch (awesome guy) emailed me once to just tell me to stop asking him for permissions; that he trusts that I know what I’m doing and have the best expertise — and send him whatever I need and he’ll Just Sign It Off. I Mean — Whoaaaa…. RESPONSIBILITIES Much?!
Not that my work was anything less than the Utmost Precision; I was working with Serious Data that had Major Security Written ALL Over It… Involving Building a New “Bespoke” Database System from Scratch, with Me & my honest-to-Gods MD CS handing the Data & the Builders of it creating the actual “physical” Database over in [sodding] San Francisco!
It got Nothing Less than my most Fastidious Self… And A Lot of Swear-Words!
So Much So, that when I made my One And Only [professional] Mistake; my Boss’ Boss had to Talk Me Off A Ledge. In Person(!).

From BIG International Corporations to the NHS — in fact, I was working for a Prominent London NHS Hospital when It All Hit The Fan)

Unfortunately I had to give ALL that up when I became Too Ill To Work in March 2014. It was a Sick-Joke Birthday Present from the Evil Circles of Soul-Eaters — my last day of work coincided with the Day Before My 33rd Birthday.

All Because I Have Fibromyalgia –
Constant & Severe Chronic Pain. Everywhere. All The Time.

I caught Pneumonia and then my body apparently decided to turn it into Fibromyalgia & Shut Down my entire system. Bit By Bit By Bit…
Until there wasn’t really anything left of it to use.

It took 18 Months To Get Diagnosed.

And Entire 9 of those Months was waiting for the Pain Specialist to see me again, to tell me my MRI Results. After that?
Another 3 months to see a Rheumatologist.

What I was basically told by the Idiot Rheumatologist who diagnosed me with this, was that there was nothing they could do about it. That I couldn’t take the appropriate meds, except for Pregabalin, thanks to being drastically intolerant to everything else they can give, and suffering a rare Blood Clotting Disorder.
That there was nothing more they could offer to relieve the pain… Despite mentioning [with Pity… GAH!!!] that this “was the worst case he’d seen and I was ‘So Young!’ ” [I was 33; not THAT young!].
And there was always the fact that “Fibromyalgia is NOT a Degenerative Disease“. So “It Won’t Get ANY Worse”… So I didn’t need Ongoing Care. [Freaking CHARMING].

Then. He. Discharged. Me.
No Follow-Up. No Real Treatment Plan. No Help. Just No Absolutely Nothing Whatsoever…
I was Devastated AND Astounded.
I Had No Help & I Was In This… Alone.

This meant… Zero Treatment. Zero Pain Relief. Zero Real Support.

My London Life… BUCKLED … CRUMBLED beneath the weight of my Deteriorating Body. I couldn’t Walk. Or Bathe. Or Wash My Own Hair. Or Dress Myself... From the Spasms, From The Pain, The Weakness & Exhaustion, The Way My Hands & Arms Wouldn’t Work, How I was Suffering MORE Paralysis in my legs…

After TWO Long YEARS of This AGONY with ZERO Input (despite MANY attempts)from Health & Social Care, there was np way I was able to continue in this manner. I Just Could Not Look After Myself. So… at the Age of 34… I Had To Go To Live With My Parents — So THEY Could Look After Me Instead… [Again]

“Not Degenerative”, My Ar*e” …

The Day I Left London… My Heart BROKE… My Soul SHATTERED… And The ME I Had Known My Entire Life… Died. Whomever I was… From That Moment I Left… Has Been Some Alien Zombified Twisted Version…And A Complete Stranger I’ve been Loathed To Even TRY To Get To Know…

The reality is that the STRUGGLE the entire time.
I’ve had to search for and fund my own treatments and aids – wheelchairs, walkers, osteopathy, alternative medication like Devil’s Claw, physical braces, an extortionate membership to a spa to undergo my own hydrotherapy…
 
But I continued to get worse. Then, I contracted Sepsis from a “Horrendous” Bowel & Bladder Infections — I was rushed to A&E the day before we were due to go to my first niece’s christening, coming round not in the hotel I’d booked, but in the Surgical Assessment Unit just off A&E… Later reading in my notes I was being treated for “Staph-and-Streptococcus” [aka – Blood Poisoning].
It Took Its Toll… Six Solid Weeks In A Hospital Bed, Hooked Up To Some Serious IV Antibiotics.
Every Cell More Than Well Aware it was a Serious Fight. I Won — But Not Without Consequences and Serious Repercussions. I was Discharged the Day After My Birthday that year.

Eight Years pretty much To The Day of my getting the Pneumonia that triggered this Fibro… I caught COVID. Only I wouldn’t have even Known, if I hadn’t caused myself to Aspirate and create a DOWNRIGHT HORRIFIC Chest Infection. Obviously, my brain first went COVID… but it wasn’t caused by it.
Two Other People in the house had been Suffering from COVID for about Two Weeks (and I was feeling quite fine), I have no idea how long I might have even had it?
Because the “Pregnancy Test” [the LFT] was Negative.

So, the PCR Coming back POSITIVE was a REAL Damned Shock…!

I was also diagnosed as Autistic (back then, “Asperger Syndrome” Type) in October 2014… about 25 years after it would have been most useful. 

There aren’t any good days. It’s either bad day or The Nightmare Ones

 

~ I Am Me ~
~ …Unfortunately… ~