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A Different Physio Pain: When NTs Harm Without Consideration…


I went to physio. I wish I hadn’t. Even though it was technically a “good session” — productive, challenging, effective… It was not a good experience.


Mainly, I’m upset because after all my (emotional/ psychological/ mental) hard work, I’ve been thrown back to feeling inadequate, clunky, awkward. It was horrible, making me feel like physically vomiting; the nausea siting in the bottom of my throat like a boulder. I felt shame, resentment, disgust (with myself, and also the physio). And the worst thing—My chair no longer felt like an extension my myself, like it usually did now.

No. Shame.

This was how I felt for years. When my legs were failing, and after they failed. When I had to learn to deal with spending my moving life with a wheelchair. Learning to realise, that — amazingly — I was not “confined” to a wheelchair at all, as people so often expressed. No—The exact opposite, in fact. I was freed by my chair!

The realisation was slow coming, but it was astounding. No longer was there suffering of pain through my hips and back, wobbling on my feet and afraid I would fall. Over time, I became stronger, and then when I also had Neuro-Physio with the previous physio specialist, who was amazing, I got even better. Even stronger. First with Musty (GTM Mustang) and then with Kushty (Küschall K-Series), I become better, more capable, more confident, more accepting. My lovely chairs helped be better, stronger. It becomes my new normal.

Then someone turns up and says… it’s not. Not normal. Not good enough. Not something to be confident about.

As good as physio might be, the new person is not. She’s not like the last one. She hurts my insides, my Feels. Today, she kept going on about using my legs, “waking them up” and maybe walking. “Ooooohhhhhh, you never knowwww…” etc, etc, hollow, disingenuous, delusional idiotic bullcrap, over and over and over again. Seriously, she must have said exactly that five or six times. At least.

It. Hurt.

It felt like the obvious underlying statement was, only that was good enough—having legs. That I should blindly hold out all and any fragments of hope, and everything short of that was insinuated to be —gods-damned presumed to be! — nothing but a pathetic and miserable existence.



This ridiculous notion is what they call “Hope” — but what it really is, is Magical Thinking. And it just makes my heart and soul dissolve and freeze into dark black ice, caught between utter hopelessness and fuming anger and insult, at such horrendous ignorance.

What I prefer is realistic expectations, not stupid “oh, you never know…” utter bullcrap. I could say the same thing about walking on the moon, for gods-and-spirits’ sake! “You never know…!” Gah! It’s moronic, babyish, and, frankly, pathetic.

Oh, and believe me when I say I couldn’t care less if it’s “coming from a good place“, or they mean something nice. If you mean something nice, say something… y’know…Nice..?! Intention means nothing if the result is nothing but harm.

I will never understand the NTs’ obsessive insistence of clinging to blind, delusional “optimism” (aka: Magical Thinking). What’s wrong with Truth? What’s wrong with Reality? What is wrong with being less than Fairy-Tale Perfect…?? 🤬😡😤

I understand “Never say Never” about Unknown Quantity or Unknown Outcomes, especially with people. I fully accept there could be some connective electrical activity re-triggered and re-awakened after the (stress-induced) traumas I have endured over and over again. Unlikely as it is. But there are many, many better ways of communicating this, including offering great support (this is what her predecessor did). Pity is never an answer.

No scientist or mathematician got anywhere by basing their answer (or presumption) on nothing but a premise or hypothesis — Yes, almost anything is technically possible. But then, there’s also Magical Thinking, which involves utter Unicorns-and-Rainbows levels of nothing but fantasy.

Scientists allow for anomalies and possibilities, and yet they also don’t expect the moon to fall down to just 33,000ft above sea-level so we can all have it easy and just fly there on a 747 widebody, or for a black hole to morph into a sandwich, because “it’d be cool”. 🤨🤨🤨

In other words, we can’t just manifest crap because we prefer it.

If that was the case, I’d be using my own 3 wishes to make my natural hair to that of Disney’s The Little Mermaid, for my legs to be her tail, and for the ability to read people’s minds. I would not be wasting one on whether I could walk again…! 😒🤨😤

I cannot even begin to explain how these sweeping statements put my teeth on edge. Disingenuous. Despicable. Fantastical. Delusional. Weak. All things I am not, and refuse to be..

Maybe it’s the ASD. Maybe it’s just (or/andAlexithymia. But all of that delusional stuff just… Sends me into a tailspin. I’m here, I’m *Me*, and *I. Can’t. Walk*. I have a pretty chair with cool wheels to make up for it, and the physical strength to help me function and manage it. There’s nothing wrong with that. Is there…?

What I *do not* have is Mental Strength, and I’m Traumatised and Fragile. I cannot bear being told that basically I should do nothing but “hope” I can walk “one day”, because nothing else is good enough, and anything else is entirely… Pitiable.



So… What, then? I genuinely do not understand… Why is it so not OK to be like this, like me, that I’m being pitied and told to invest in false hope by a physiotherapist? One who dismissed what small (or huge, to me…) progress I had made, in favour of sweeping statements of disingenuous pity and false hope?

Am I supposed to twiddle my thumbs in the Lobby of Life, waiting for the 0.000000000001% chance I *may* feel or move my legs again? I have a better chance of winning the lottery… and I never play it. Am I now just some-thing… That I’m not worthy to do anything else, I I have no use of my legs? Am I just to sit around and be Pitied? Is that supposed to be it, now? That “walking should be the bee-all-and-end-all of life and everything” is… life-limiting. Debilitating. Disabling.


Pathetic.

To me, it’s a rediculous notion for anyone to have… And for it to be utterly despicable in a damned physiotherapist.

I’ve spent a long time trying to build up to having confidence in being in a chair. This made it all come crashing down. Swept away, destroyed, what little confidence I had started to develop in myself as an active wheelchair user. I cried — and I do not cry easily, if ever. I’d worked so hard to feel some self-worth in being a wheelchair user and physically incapable. Now, it was gone.

I do not wish to sit in Limbo, waiting for some fantasy “Maybe” (which isn’t real at all). I’m not putting things on hold anymore — I’ve been pushing myself to go ahead and be Me, which includes having Wheels and getting on with things. Even if its small things.

I don’t know if I have the… verbal sophistication?… to fully explain what I mean. Why it hurts, damages, so much. Nothing I’ve written here, or could write, could convey, that is accurate to how much this affects me and hurts me. Harms me.

I feel Depression inside, with its special brand of Extreme Anxiety & Sad. They’re playing their part well, and strongly. Inflicting their “Bad Feels” upon me, and more than occasionally drowning me in them. Making all these things worse, communication and processing longer. Meaning this “incident” with the physio made everything 10,000 times worse.

It’s all become a bigger mess now. This has been added to my brain as yet ONE MORE TRAUMA to deal with. It shouldn’t be like this.

There really is only so much that a person can take… and I passed my limit a long time ago.


A Victim. A Survivor. A Warrior.
Keep Fighting.

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The Hair Dye Rollercoaster

Dying Hair.

I rather imagine that to most people, it’s not that big a deal… Or maybe it is, because, well, it is their hair. But whatever that truth may be, mine is that of… well, if it goes wrong, it’s a Mega Disaster of Exreme Proportions. What am I talking about? Hair dying going very, very wrong. Not the “it’s gone accidentally green” kind, mind you — for me, all it has to be is the wrong shade (especially if it’s too dark). It’s a very, very real concern for me, when I have to start using a new hair dye, because my usual one is somehow available no more.

The very words new hair dye just fills me with dread. It could mean anything — a wonderful new find, or a complete disaster of epic proportions that scar my red-hair-loving sensitivities. There have been more than enough disasters. I’m too old and too experienced, and far too Aspie now, to cope with anything other than perfection. And I cannot guarantee that if I have to use a completely different kind of hair dye, and just do more than basically hope for the best…

As an Aspie (ASD/Asperger’s), I find any change incredibly distressing… Add to that, my finding out my favourite hair dye was now unavailable and had ceased to exist. Not only that, I’d not long had to go and find it as “the new hair dye”, because my former favourite dye had been changed just enough so that it was now unreliable, even had an unstable and unseemly colour to it… and I had been using that one for years. It was not good.

All this, along with everything else, was making things not too easy to live with, when it came to my hair. My hair means everything to me, and dying it red — no matter what shade of it that I’m after at any one time — is the biggest part of it. Without it, I wasn’t me. I couldn’t self-identify in any way if I didn’t look down as see red tresses. If I looked in the mirror and saw even a small amount of “Badgering” (where the regrowth is a mixture of heavy grey and nearly-black hair that is showing well enough to be obvious), then I started getting a little anxious it was no longer red.

An Aspie’s Dilemma — Fear vs. Roots

It might sound silly, or dramatic, to others, but so much swapping and changing was all starting to feel like Trauma. It can be downright traumatic to endure any changes when you’re ASD; but something that beloved [as my hair] being forced to undergo so many of them in a relatively short space of time (for me) makes it too, too hard.

This felt like Trauma, on top of Trama, on top of Trauma. This current rollercoaster of hair colour was emotionally exhausting, always having to go and find a new one that would suffice, and then having to use a whole new dye, forced to repeat the scenario over and over again, when this recently “new” one is discontinued or no longer available for some other reason.

Not only is all of this going round in my head to deal with, but there is also the part where I’m trying to come to terms with the fact that a replacement is required at all... My mind simply cannot comprehend why it’s necessary to discontinue or change something that just works. That fact is also difficult to comprehend. When it does happen… It’s always a split second moment of being hit with the feeling of utter grief and despair of the loss (yes, honestly, that is how I feel!), soon replaced by a sense of just freefalling and panic. What to do now? What am I supposed to do, what am I supposed to use, to colour my hair? Where do I go? Who [in the hair dye universe] do I turn to now? How could this happen? Why me? … Seriously. 😐 🤨

It runs through my head, over and over again, like a mantra of pure terror, of utter panic. It usually sends me into a frantic, fevered hunt all over the internet for something to replace it. Quick. This super-fast pandemonium is only halted by finding something that will… suffice… at being my answer.

I do hate doing at that though… It’s a sensation that I would rather never experience. Ever. I was saved from it for many, many years — but then the company went and changed it, somehow, and then I had to go to find different ones. Then a few months after I managed to find its replacement, that ended up discontinued without a word of warning. Leaving me with absolutely nothing with nowhere to turn. Just Charming...




This is how I have ended up with this choice — Garnier Olia. It has some lovely reds on offer; the one I chose (after some long pondering), was 7.40 Intense Copper.

My hair was dyed a very similar colour from my last one — therefore, to me, this felt like it showed the most promising liklihood to be an adequate replacement.

So, terrified and with great trepidation, I chose it and waited to find out the fate of my hair with this one.




New Beginnings. Again.

Starting the process of using a new hair dye was a Big Step. I had to try hard to convince myself to do it. In the end, it was the Badgering — at least 2 inches of the that damned regrowth by now — that did it in the end, and pushed me over the edge. I just couldn’t take it staring at me anymore.

The process wasn’t a complicated one, about the same as all the others, but it was more elegant and better thought-out than any other one I’d come across. It was rather clever and thoughtful to make it so you could use the box itself as a steadying stand for the applicator whilst you poured the Developer Creme and Colour into it.

For someone with dexterity issues and weakened fine motor skills, who is now very clumsy from it, this Hair Dye Set/Kit was the easiest one I have come across. For me, it is the most “fingers-friendly” of them all. I really liked using it, and I was constantly surprised as to how different (read: “easy”) it was to use to the others.

It also certainly didn’t hurt that it all came in some lovely packaging, too. The box itself is very elegant, sophisticated and eye-catching, with most of the front of it showing just the hair colour, not a model with it on, allowing you to have a better idea of what shade is to be expected when using it. The bottles and tubes within are pretty and easy to use — not to mention the tear-shaped bulbous applicator that is a fantastic shape to use it, and makes applying it, even with my rather struggling hands and fingers, easy to manage.

If the Kit itself was well-made, the product — in my own opinion — was just as much so. It was easy to use the dye, because instead of it being a form of… sticky, goopy, watery, well, goo… it’s a thin but creamy-esque texture that was easy to put on. It went much further than the average bottle of dye. It covered pretty much all of my hair quite well (and I have really long hair) and I only used the one bottle to complete my hopefully-not-too-different transformation.

I leave dye on to marinade/cook way too long — but I find that it works a treat. It’s not 30 minutes, like on the box… Oh, no. Mine is more like, 3 hours. Oh, yep! But afterwards, I get a pretty great colour, better than I did before.

To add to this, I also wrap it up in a plastic shopping carrier bag, tied around my head. This helps keep it from drying out, helps keep it safe — and things safe from it! — and allows it to marinade better under there. They’re quite the rarities now, but I end up getting a few of these plastic carrier bags from some places, and mainly Subway sandwich stores, due to requiring to carry multiple items on the back of my wheelchair, and of course, I hang onto them all to dye my hair with!


Shiny. New. Hair!

The rest of it now, even for me, is a piece of cake. After the required Marinating Time, it’s into the shower and the dye comes streaming off.

The rest, as they say, is history!


Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?


The Past Collides With The Present…

 

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Today, I found an old (former?) friend on Facebook (…where else?!). I haven’t seen her since she left for Australia with her family when we were 12 years old. I happened to be looking through old photos and wondered if she was on there. And she was. And I saw her as she was now… 25 years later.

Married. Three boys. High School Graduate. Still close to her family. Her sister shared the same (birth) name as I did, and she was also mentioned on there – married also. Looking almost exactly the same as she had done, just older. I recognised her picture… That smile was always so bright and infectious, it was instantly recognisable, if nothing else.

My instinct was to say Hi. Naturally. Since she would never be able to find me on Facebook (I deliberately ensured that no one from my previous life could find me first), I thought it would be nice to get in contact, because before she left we were the best of friends and fellow Beatlemaniacs. In the pictures we looked like we were having a great time. But after that initial thought… another feeling came over me.

My reaction to finding her wasn’t quite what I was expecting at all.  I ended up with that now-familiar shockwave I get when I realise that what “normal” people with their average lives take for granted, I never can. When I see what other people my own age are doing… in glaring comparison to mine. And I was left feeling… Sad. Inadequate. Pathetic. Lost. Forsaken. Broken. Pointless. A Nothing; A No-One.

She had a husband… I had Fibromyalgia. She had three boys… I had what felt like a hundred pills a day to take. She looked like she was doing well… I had a wheelchair and a catheter that refused to stay put. She was living a good life… I was barely alive and broken into too many pieces to even count. She lived in Australia… I lived with my elderly(ish) parents (and don’t tell them I said that!) who have to care for every damned need I have, despite my being the very wrong side of 30 (and I used to think saying “the wrong side of 20” was a tragedy…).

What on earth was I ever supposed to say to her?

All I could ever offer was the possible bad news (or unfortunate news, at least) that her former [best] friend was a wheelchair-reliant, mobility-impaired Fibromyalgia sufferer, who could no longer do anything, nor remember much of anything, and lived in constant and consistent agony. Was I only to simply talk about what I used to do – what I once was?  I had no conversation, nothing to offer, and what use could there possibly be from bothering her with a G’d Day from me?

And no, it’s not about falling for some “perfection” boloney that most people put on there (there is surprisingly little about her life on here, except some recent pictures of her boys, who look adorable anyhow), and then putting my life up against them. I don’t do that anyway. It’s about the fact that what other people have, and take for granted, was never mine to enjoy, or have. There is almost no one I know, if anyone, that is in the same situation as me. Immobile, in agony, with a life lost at age 32, now living with and being taken care of by my parents for almost everything,  as if I’m some kind of overgrown toddler (sort of, I’m not exactly that much taller than a child!).

Every small thing brings home what I’m not. How broken I am. What has been lost. What nothing has been left behind. I hate the self-pity… But after nearly five damned years of this, I still yet have no idea how to process all of this. Because there is no How or answer to Why… It’s something that exploded from nowhere and no one can ever explain it. Leaving me struggling to do the most basic of things, and dignity be damned! I haven’t had any of that for a while now…

This woman is a memory of what could have been, what may have been. When I knew her I was a young child with endless possibilities. Before the serious bullying (it turned out that it was she who was inadvertently keeping me safe from this, as it started up almost the moment she was gone…) that destroyed my childhood and teenage years, as well as the first half of my 20s. Before umpteen illnesses and allergies – not to mention the Fibro. Before I was killed inside and a zombified vampire of a soul returned to attempt to survive and cope with whatever little that was left of me.

She left just before the shit hit the fan… so the (rather spotty and sporadic) memories, the seemingly unending amount pictures of her or the two of us, the girl that I had been and that I was back then, all are shadows long lost to the older, destroyed woman I am now. Seeing me then, with her, innocent and ignorant of the hell that was to come for the next Quarter-Decade of life, was a shock. I don’t remember those times – I don’t remember most of my entire life – so I have no recollection of who I was before. But in those pictures I was introduced to her. This person I was. Alongside my friend. I was smiling. Having fun. Clearly being silly and enjoying it. Being Beatlemaniacs together. Being in the first year of high school together (before that school played its part in pulling me apart). It was a relationship full of fun, hope, and playfulness. Without a single clue as to what was going to come next…

And thusly, contacting her would achieve nothing but encouraging the Ghost of Life-Once-Was to haunt me again. They’re haunting me enough as it is. This woman isn’t really the same person who was my friend. She’s no longer CE but Mrs. H, a mother, whatever else she has become. The only thing that is still the same is that infectious smile, and her kind and sparkling eyes.

I do not remember the past, so it must be best to let sleeping dogs lie. I was long traumatised by everything that happened to me, and probably the best thing is that I have forgotten. Retrograde Amnesia happens in PTSD for a reason, after all – and I’ll kind-of thank Pregablin for deleting the rest. I may not have much Short or Long Term Memory, but although that is annoying and unfortunate at times, it’s a good thing most of the time, and it’s best not to go rooting around what’s there in my mind.

Therefore, Mrs. H, née CE, I think it still best you still don’t know where I am or how to contact me. I ensured my old name is not linked to my online footprint or profiles for good reason. My past should stay where it is. In the pictures. In memories. In the past.

 

 

 

 

 

 


Beginning Of the End (of the year…)

Already yet another Fibro/Fatigue flare-up… and just before Yulemas (as in Yule / Christmas). And just when I want to see Star Wars: The Last Jedi, too…

More fever, more pain, more exhaustion: I’ve been up all night for days, I’ve barely slept in nearly a week. Needless to say it is not going well. It’s a good thing I have my new mattress and catheter… I know exactly how much worse it would have been if I didn’t have those.

The worst feeling is that I still cannot reconcile how much absolute control this/these condition(s) have over me, how it dictates my personality, how the pain and exhaustion prevent me from even leaving my room or sometimes even my bed. During a flare-up I can do virtually nothing, and it seems that no matter what precautions I attempt, they’ll turn up whether I like it or not.

So you might not be surprised to know I would rather Yulemas disappear and I couldn’t care less about it this year. I can barely muster the energy to even want to see The Last Jedi  and I’ve been so excited about this for two years. My friend and I were supposed to go to  Christmas thing at Lyme Park too, and after a whole load of flare-ups, one after another, after another, that now is too off the table, amongst many other things. It better not take Star Wars away from me…

There’s so much I had plans to do, now it’s Yulemas, nearly the end of 2017, and I’ve  achieved precisely nothing from this year (unless you could finally finishing PC edition of Dragon Age II…). Instead of achievements, it’s been yet another year of loss. Even losing my best friend to a year or two travelling around South America (although, bless her, she still makes sure she’s there for me if I need her).

The weather has destroyed so much of my health (whatever flimsy amount of it there was), everything from severe storms and torrential rains, to terrifyingly low isobars and bloody snow. Plans have been destroyed. I lost the remainder of my mobility this year.

It’s been quite the Annus Horribilis.

And I doubt it’s going to get any better in its final week.

 

 


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