I Am A Chronically Ill, Chronically Pained, C-PTSD & Anxiety-Filled Agoraphobic, Social-Phobic, People-Phobic, Paralysed, Wheelchair-Whizzing Autistic Person (she/her/Meh/Whatever).
I ended up Paralyzed and Dealing with Extensive, Severe Chronic Pain, Numbness & Paresthesia, as a result of having Severe Fibromyalgia — mixed with Hemiplegic Migraine (yep, that’s literally what the Neurologist told me & as far as I know… It’s Unique…[!])… Apparently, that's what caused the Numbness & Paralysis. Contracting SEPSIS in the form of Staph-and-Streptococcus, between 2017 and 2018, made things a Lot Worse.
And in 2021, I contracted COVID & had a severe Chest Infection from Aspirating food, leading to Permeant Long COVID - which has now utterly flattened me.
I Really Miss... Putting On & Experimenting with Make-Up as an Art. Being able to Get Dressed. Wearing My Fabulous Victorian-Gothic Outfits I used to love So Much. Going to the Shower whenever I wanted. Being able to wash my hair. Dying my hair. Just being able to get out of bed when I want to (rather when my 2nd or 3rd set of meds kick in). Move Around without being breathless, exhausted, winded & Just Plain Dizzy with PAIN. Go out with my dogs, or even "Chariot-Racing" with Soul [he'd pull my chair like a chariot, running full-pelt, and loving it!].
I Am, Quite Frankly, STILL Lost, Grief-Stricken, Reeling, Upset & Disturbed by the situation I've found myself in... Which is as a Disabled Adult living with her [technically "older/elderly" - but don't tell the that!] Parents, and requiring near enough 24-hour care for Just About Everything -- Parents who were both already in their 60s by the time I had to come home to be looked after, in 2015, aged 34. [In fact, in 2021 my father turned 70 - and he's in better shape than people in their 50s!]. I was In Shock for a Long Time about it for YEARS -- and, more recently, am struggling with Acceptance -- and, also, the Guilt that sits Heavily for my parents having to house me, take care of me, and Look After My Physical, Psychological & Medical Welfare. In return... All I can offer is... Tech Support (and nearly half of my meagre Finances I get from Disability Welfare to try & cover at least some costs, oh, and free car tax for my Dad, because he does everything for me outside -- and he'd take me places too, IF I actually ever went out anymore.).
Admittedly, it does and does not help my confidence and state of mind that they're both FAR more healthy, capable, fit, physically active and physically capable than I currently am -- and my father's 30 years older than I am! They even look after the dogs; they've hugely bonded with my parents, and my father loves taking them out for walks - he even used to take them on Cycle Rides, with them running alongside him (till they all got a bit older and they're not able to manage this, now). But....As someone who used to be Advanced-Level Horse Rider & Yoga Practitioner, as well as a Classical Singer, Dancer & All-Round Stage Performer, this... Hurts Me. This is the time I should be helping them -- Not the other way around. On The Other Hand, the other side of that is that it means they are also able to offer me the level of Support that I, very unfortunately, Still Require, as well as helping me with Medical appointments, travelling, getting prescriptions, talking to to medical personnel on to sort things out, and so on. They're the Dragons At My Door. I am even tentatively friends with my parents now -- something unimageable when I was a child being Traumatised by them.
Obviously, they're older now, as am I -- And they STILL have to look after me, like I am a child again. I must rely on them for everything, and -- this kills me -- I am, now, prolifically Disabled... And That HURTS. It Is A Fact, I Actually Find Repulsively Disturbing & Completely Devastating.
From Bad To Worse...?
It's made worse by the fact I was Finally Starting To Overcome the Sheer Amount of Damage the Sepsis had left behind -- and a couple of Extremely Traumatising Incidents Just Before First Lockdown, in early March 2020 -- had created. I was Getting Better & Coming Out Of The Car-Crash Wreckage that they had left me in.
Then -- COVID, followed by Long COVID Thereafter. Getting Worse & Worse, until I Struggling with Hyper-MEGA-Exhaustion, which was also Contributing to More Major PAIN for Fibro.
What pushed that Over The Edge was a Bunch Of Hospital & Medical Incidents that happened from November 2022 through to [at least] March 2023. After that, Long COVID turned into Nightmare Forever COVID -- turning "difficulty in managing moderately-annoying symptoms" to Nightmarish Unable-To-Function Levels of Physical, Psychological & Cognitive Medical Disaster.... Rendering me Bedbound, Exhausted & Suffering Paresthesia Pain of levels that are the same as when I was Admitted To Hospital With Sepsis. Where literally Sitting Up In Bed is a Herculean Effort (with no neat hospital bed to help me up) and, if I manage to get out of it, it takes literally HOURS to get enough energy back to DO something with that.
Now... I miss being able to --
Put on Makeup... Go out - if I wanted to... Eat What I Wanted To... Wear Clothes That Used To Not Hurt When I Put Them On... Staying Awake Longer than 2 or 3 hours maximum, before Blacking Out from Sheer Exhaustion... Have Energy To Manage, well, ANYTHING...
... Nothing seems to go well or stay well anymore.
Thing is, I wasn't always like this.
I was a [relatively] healthy person, independent with my own life, my own [rented] home, a career I was Proud Of.
I was a Professional IT Geek, Specialising in Database Admin & Data Analysis, mainly to pay for coffee and games (and the rent, I guess…?!). I worked around London as am IT Contractor, working for various Large Companies, and even the NHS — which I was very proud of. Going back to the NHS felt good, having worked for them for some time earlier, but in a different guise.
Before being an IT Specialist, I was an HCA for about 10 years (on-and-off), working care homes first, then in London Hospitals. Care Assistants (aka HCAs, Nursing Assistants & NAs, depending on where you work) are overlooked, underpaid, and mainly ignored by everyone -- well, everyone but the Patients themselves. You do all the work for them, but then you also do all the work for them. It's a thankless job if you're looking at it from getting seen by the Bureaucracy -- but if you look at it from the point of getting seen by the patients, it's extremely Rewarding.
I lived in London from 2003 to 2015, having moved down from my birthplace of North Wales. It was a Birthday Present to my self, to FINALLY Escape the Turmoil, Trauma, Pain & Suffering of my home-"life". And for those 12 Years I Prospered.
...The Problem Was...
It Just Wasn't Ever Going To Last.
~ CHILDHOOD TRAUMA ~
~ ADULTHOOD TRAUMA
~ SEVERE CHRONIC PAIN ~
~ SUDDEN DISABILITY ~
~ LATE-DX AUTISTIC ~
~ Completely LOST ~
I Used To Be Me…
'til I Just Wasn't.
* ~~~ *
I Was A MEGA Coffeeholic & Starbucks Worshipping, London-Loving
Data Analyst & Chronic Bookworm (particularly crime novels),
Gaming Obsessive Geek, Nerd & Tech Mega-Geek.
* ~~~ *
Then. I Just Wasn't Me Anymore.
* ~~~ *
I contracted Pneumonia in 2013, and that somehow turned into a Severe Version of Fibromyalgia… So severe, it affected my nervous system to the point I ended up virtually entirely Paralysed from the sternum (chest) down. It took about 4 years, slowly deteriorating, whilst literally the entire Medical Service of NHS North East London & NHS Wales (Betsi Cadwaledr) ignored my plight and just… Let Me Get Worse.
I was forced to return to North Wales to live with my parents in November 2015. I could no longer take care of of myself and Souly, and there was no help or treatment being offered to me in North East London [Foundation Trust — under Heavy, Severe Budget Issues AND JUST In Special Measures At the Time… For Good Reason…], anyway.
I had been Discharged from everything with the Classic “We Can’t Do Anything Else For You” line. Even The Rheumatologist [who Diagnosed the Fibromyalgia] stated it was the Worst Case Of Fibro he had seen and was sad I was “So Young“… I went to see him in a wheelchair, with my father, at the age of 32. I couldn’t walk properly by then, and when he so much as even tried to poke at me, I flinched and near-screamed outright from the PAIN.
And Yet. After All That… He. Did. Absolutely. Zero. Zilch. Nada. Dim Byd. NOTHING… He. Just. Simply. DISCHARGED. ME… And That Was That. There was No Choice in the matter. And My (wonderful, brilliant) GP back then was half-livid about it, bless him. But there was nothing else for it. I was on Pregabalin, and nothing else because the rest were SSRIs & Other Anti-Depressant Style Drugs (known a LONG time I Absolutely CAN’T Take Those!) and NSAIDs (which may or may not outright kill me because I had Von Willebrand’s Disease).
After Precisely Two Years Of All This… The Person I Was Living With for 10 years — never came home one day, after ignoring messages, and I had to Find Them to see what was Going On… At which point they told me they no longer wanted me there, couldn’t carry on living with me because of how ill this thing has made me, that they wanted to give up the apartment, and that I needed to get my Mam and/or Dad to come and get me and my stuff… And they would return to say goodbye [and make sure I left — unsaid but clear.].
The Intense Betrayal… Sickens Me To This Day… And it’s been… Years & Years & Years Later.
THEY Made ALL MY Decisions FOR ME – and I never got ONE SAY In The Matter.
In One Day — One Single Minute — They Had Stolen My Future & Destroyed It.
My Heart Broke — my Everything was London — Belonged in London — and now what Independence I’d had left, was Snatched From Me.
I was Gutted & Torn…
And I Ended Up In The Clutches Of A[nother]
MAJOR Nervous Breakdown…
I was forced to live with the [aging] parents that had tormented me, haunted me & traumatised me as a child. I was once again with them in a VERY Vulnerable State living under the same roof and having to be cared for like a child again. The VERY THIOUGHT of it had Always TERRIFIED Me & Sickened Me.
I had ALWAYS Declared I Would NEVER GO BACK HOME… That Person Knew It WELL, Too...
But — Here I Was...
Literally Living My EXACT WORST NIGHTMARE.
The Sheer Traumatic Devastation of All This, The AGONISING PAIN & The Meds I Was On — alongside the Immense Nervous Breakdown I Experienced, left me with almost Complete Amnesia, Regressed Me to the State of a Three Year Old, and I literally couldn’t remember how to move or crawl, or speak properly — let alone walk.
For Years, I was in Immense Agony… with no real Pain Meds and Zero Medical Intervention to help. It was a Living Nightmare — unable to get any respite from the abject Screaming Agony whilst my body failed me more and more… Until I could not walk or stand or feel my legs anymore.
And Then… That’s Really When My life As I Knew It Was Over.
It took Contracting Lethal Blood Poisoning to actually
get proper treatment for the Fibro — how dumb is that… ??
There was a U.T.I. (Urinary Tract Infection),
Which became a Bowel Infection, which became…
Staphylococcus & Streptococcus Blood Poisoning…
~ Sepsis... ~
It took Six Weeks of constant IV Antibiotics to get rid of it, even included being in hospital for my birthday. I was rushed in barely conscious by my parents to A&E, and I woke up there without a clue as to what happened.
I was supposed to actually be in an Accessible Room of a hotel because it was my baby niece’s christening the next day (my only sister's first child, no less) — so I was immensely confused to be looking at the familiar bright lights and ceiling of a hospital when I opened my eyes…
My parents rushed me in on a Saturday in January 2018, and I'm recorded as being admitted at 12:04pm. I didn't open my eyes till just gone 5:30pm; so only after HOURS of IV Fluids, Drugs, Painkillers & Antibiotics had been Poured Into Me, did I actually regain consciousness and some Lucidity. It doesn't bear thinking about how ill I actually was. Or how close to anything worse I happened to be.
Incidentally... This is the ONLY reason I ever found out that that there were painkillers I could take that would work, and work relatively well, with the Fibro I screamed more for than the Sepsis itself. During my stay I was given Morphine (Oramorph form) and Tramadol, with IV Paracetamol. I don’t know what it did for [forevermore known as] "The Occocuses", but it Really Helped me deal with the Fibro.
The medical staff couldn't work out why I was still screaming with agonising pain when The Occucuses were being successfully treated, with markers coming steadily down over time. After trying to explain several times about the Fibro and my prior "survival for a vague existence" lifestyle, the penny finally dropped - and they were horrified that the Fibro was that out of control and being ignored by GPs.
They immediately put in a request for me to be seen by an on-call Rheumatologist (because they’re the ones who deal with Fibromyalgia; go figure in This Day & Age where we Know it's Neurological [!!]) gave me permission to keep it all once I left hospital… and It’s the only time I’ve ever seen one, except for the day of my Diagnosis. The only exception was Oramorph, because they can't do that with Controlled Drugs, but he told me to get the GP to sign me up for it immediately upon Discharge.
Zomorph has been added since (Morphine pills in higher doses than Oramorph), and the Fibro Agony is at least kinda-sorta under control now. And I have a Super-Awesome Chariot (Kushtie The Wheelchair) to also help me now, too -- having a custom-made wheelchair made a Massive Difference, too.
THE TIME BEFORE NOW
I have been a lifelong sufferer of “Depression”. Until 2014… Diagnosed aged 12, unfortunately no-one looked any further. I lived with it for over 20 years, without any idea what was really going on. I thought I knew – I was put through pure Hell for the better part of two decades, made me descend into a living nightmare of hysterical anxiety, eating-disorders, agoraphobia, painkillers addiction, self-harm, retrograde amnesia… and other things too.
Bad Things happened. No one bothered looking any further than that diagnosis, though. They never realised it was more complicated than that, but unfortunately fixating on that allowed them to miss other vital things that would have made my life easier if they had spotted it.
Twenty years later, I was finally diagnosed with what was really making my life miserable –
I was Autistic.
Worse:--> Autistic & Undiagnosed –
& Made Miserable By people treating me
badly because of it & refusing to understand me
Unfortunately, because this was missed, the first 30 years of my life was excruciatingly difficult to cope with,
particularly with all the Bad Stuff that happened.
All That Bad Stuff That Happened pushed Autistic Me to Panic Attacks, to Living In Fear & in Terror
Causing Meltdowns & Finally To The SHUTDOWN that CAUSED the Severe Depression.
I’ve tried to come to terms with the horrible things that brought the depression on… I don’t really think about it that much anymore. I can feel Overwhelmed and hopeless sometimes, and it brings that yawning terrible black hole consuming me, taking me Down the Rabbit Hole and into Hell itself. But now… I know a lot more about being able to stop it consuming me too much, and how to climb back out if I do fall in…
It is actually how I ended up getting really into music, singing and performing – it was a virtually life-saving passion that gave me a great outlet for my feelings and enabled me to be strong enough to fight the demon that lived inside my mind, and ruled not only my thoughts but my life.
More Bad Stuff has happened, but the worst thing I generally feel is a bit of pathetic self-pity, and a LOT more frustration. But… There’s no real depression, now, not really. I can see the black hole looking at me, but now I realise what it is that causes me to fall in – so I now mostly turn my and walk away from the edge.
I became a Classically Trained Soprano (Qualified to Grade 5 Classical & Grade 7 Musical Theatre Singing), and then studied Performing Arts & Musical Theatre. In total, have been singing, song-writing and performing since the age of 13, and even performed several times on the West End stages of London.
I originally moved to London specifically for Singing & Performing Arts, and I was extremely fortunate enough to be a part of the once-significant Musical Theatre Company Star EFX, who put on regular Sunday Night Live shows on in the Highest Echelons of the West End Theatres. I am proud to say I appeared within the elite cast of 50 performers, in Five of their West End Shows — Twice at the London Palladium, then at The Palace Theatre (Shaftesbury Avenue), and Twice at Her Majesty’s Theatre (Haymarket). For the first time in my life, I was surrounded True, Immense Talent all around me - finally a skilled & talented fish in a small pond of equally & more talented fish. It was fun, frustrating, overwhelming, hard work, challenging, and Immensely Amazing.
In Performing Arts I was ignored and shunned - starkly just short of outright bullying - for one of the main reasons I Was Bullied in School: I was better - and I took my Vocation seriously. My fellow students were more interested in preening in the mirror, fooling around and showing off. They wanted the main parts and sucked up to the teachers. They were "luvvies" who played it up and didn't have the skill to do the job right or well. They were kids playing in the dress-up box and putting on skits for kicks. They didn't like it that I could already do it -- that's the Students AND The Teachers. Especially The Teachers.
Living in London was fun -- and not just because of the shows. I lived in a myriad of places overall - Borehamwood (just about scraping into the Greater London Area!), Hampstead, Belsize Park, Camden (Mornington Crescent), Finsbury Park, and lastly, Leyton.
The performing gave way more into the return of my true Singer-Songwriter self, and I wrote a lot of music on my laptop with the software REASON and a little 2-octave keyboard. That, unfortunately, got stolen from my studio apartment in Camden, along with all of my music - because I still hadn't learned to Back Up My Work. Next time I started writing music, on a white Macbook G4 using Garageband, USB Mic & same keyboard, I had by trusty USB Flash Drive at the ready... Shame it wasn't good quality and didn't really stand the test of time (it fell apart), though. But at least I tried -- and I managed to get at least some of it backed up into early-level Cloud Services coming up.(!)
I also finally let out my Goth Soul & became True To Myself... And for the first time in my life, Unmasked Myself, for a lengthy amount of time. Unfortunately, Things transpired that Forced Me to put it All Back On Again -- and took my life in a BAD Direction, once again. Instead of listening to sense and reason, I listened to Fear and Upset inside as a result of it. In fairness, the 2005 London Bombings of 7/7 affected everyone either Involved or Too Close - physically, mentally, emotionally. I was one of those people - and it affected me BADLY. I was Traumatised by it. So was my Best Friend & Camden Roommate Maz. We went through it together, and supported each other through that trauma.
But... It left its mark on both of us, and it spiralled our lives in VERY Different Directions to what we'd had planned out before that day. After it, though... Nothing was the same again, and our lives and our ambitions vanished into a cloud of Dark Smoke... Never to be seen again.
Maz couldn't really deal with being in London really, after that, and she very soon returned to our original home-base, the town next to mine back there. For myself, I moved to Finsbury Park, where I then lived with Izzi & Staffie doggy, Soul. Izzi saved him (June 2013) from outside a pub and we adopted him from the horrible man who tied him up outside in the cold, so tightly, he couldn’t even sit down.
We used to have a beautiful pussy-cat Spooky. Unfortunately, our lovely Spooky passed away in March 2012… I still miss him. He was a Failed Foster cat – we were supposed to foster him only until someone else adopted him, but we adopted him instead - about a few weeks later! We had him for four beautiful years, until one day when he seemed to quite suddenly become really ill and we rushed him to the emergency vet. After tests we were told he had a huge abscess in his belly… and it was too late for him. He was crying in pain when we left him, and even on painkillers he was still crying. In tears, we agreed to end his suffering, as there was nothing more that could be done to save him. He was only 6 years old. It was heartbreaking.
Izzy even helped inspire and influence me to change career direction - from Healthcare to I.T... Where I found my niche and my Heart's Desire of a Career. I had no formal qualifications. Not even a little diploma. I was a Skilled, Experienced & Qualified Care Assistant in Nursing. I was a Skilled, Qualified & Experienced Performer & Singer. And I had nothing in Admin or Computers, in any way. Yet, I was inspired to try.
I'd been a HCA/Care Assistant/Nursing Assistant for years... Since I was 15. Apart from singing, it was the only proper job I'd ever had (picking up week-long Christmas Retail gigs for extra money just doesn't count!), I had trained and Qualified with my (G)NVQ in Health & Social Care to become a Health Care Assistant in college, and that's all I knew. Even my A-levels were based around working in healthcare - Psychology & Sociology. And I also did English Lit for fun(!). I even tried studying for Human Biology & Physiology, but I had to drop out halfway through.
However... In my own time, my passion was with Music And Computers. I learned how to work computers from when my Dad First got our first Windows 95 PC, and it just went from there. Then I started learning how to do Music with Computers, and I learned a hell of a lot more...
Computers, Information, Data... They all gained more and more momentum in my Brain. Particularly after my first laptop fried itself stupid on..."Something"... and I lost everything on there. I wanted to know more about how that worked, how it got like that and whatnots. I read about UNIX and coding and DOS-programming within one of my favourite novels and found out there was a lot more computers than anything I'd actually imagined. So, as time went by, I learned and I became more understanding and better about this.
My Mam had always said I should have been studying Computers at college instead of healthcare. Hindsight definitely says 10/10 to Mam.
Because from the first time in trying anything like this, I not only found my feet in it; I Discovered My Wings.
In this career I was successful, was even specifically requested for to do jobs. I was always doing way more things than I could on paper. Even - accidentally! - Lead Data Analyst/Unofficial Interim Project Manager with a MAJOR International Data Exchange Business in their Massive New Database Project - involving building the damned thing from scratch and migrating Excel & PAPER inputs into it.
The Real Project Manager left me literally holding the [Database] baby when he f**ked off to go work for Google about two weeks into my starting there; it was terrifying. But, it was Justifying, too - proving to me I absolutely had made the right decision turning my career towards IT instead of Nursing.
The CEO of London office was a fantastic guy, and after I showed him what I could do - despite flying off the seat of my pants! - he decided out of nowhere he was quite happy to defer to me for my "expert knowledge" about what I needed, and "I knew best" (...um, what now?! yells Brain) - and I basically built the damned thing myself with the Coders over in San Francisco - with temporary help from a bloody MSc in Computer Science, who was my Data Analyst assistant. It was... Intense!
I was working with NHS Brompton Hospital in Kensington & Chelsea for my Last Gig. I was Lead Data Analyst - again - for a Major Data Migration Project. The Patient Database, known as PAS, for this hospital had been sitting on an Ancient DOS Platform since 1986 and they hired someone who finally saw fit to update it... in 2013. And she is the person who chose me out of a head-to-head Second Interview against another person.
The Woman Now In Charge was fabulous -- unique, clever, insightful, pro-active, and loved what she was doing -- the passion poured out of her -- and I so wanted to be like her when I "grew up" [whenever that was going to be...!].