Category Archives: mobility problems

“You Don’t Know What Damage You’ve Done…”

There Should Be No Shame…

But… There. Is. 

So. Much. Shame.

I can’t work. I can’t breathe. I cannot seem to stop it running around in my headDepression, Panic, Hopelessness, Despair… All claiming me. Claiming my attention. I cannot relax. I can’t even take a deep breath — both literally and figuratively.

This idea has burned up my brainShaking, Shaken, Shame, Horror, Sickened Disappointment, all running rampant, until now I can barely move, I’m so frightened.

I read today on Twitter one single Tweet that stuck in my mind, saying:

 
If you’re living with this illness and functioning at all it’s something to be proud of, not ashamed of.
 

Carrie Fisher

This is what she has taken away from me. That physiotherapist.

Every Hacker, even every kind of Fighter, knows it takes one tiny flaw, one minuscule hole or weakness in the armour, and you can wriggle in and destroy what you’re going after. My armour was nowhere near strong enough to take this. It was new, vulnerable, still setting in its place. I am not sure if I ever even had a glimmer of a chance to survive such an onslaught of horrific demons and emotions from that one simple curse laid upon me.

My mind feels… Dead. Hopeless.

I’ve been trying to play Skyrim. No avail. Between my head’s cacophony of daemons, and the dogs’ constant barking (which dad ignores until I yell at him over text to fix), I’m in Emotional Hell. With Alexithymia and ASD. Meaning, I got no way in all hell’s universes of getting through this or managing this alone.

The constant barking screams it all home — if I was OK, if I wasn’t trapped here, if my legs workedthey wouldn’t be barking. I’d be there, telling them what to do until they figured out it wasn’t in their best interests not to make a peep. Dogs hate lectures. A lot. They love huggles and praises. So, it works like a charm to lecture their ears off, and they really think hard before doing it again. (Go on try it…!)

QueueHatred, Resentment, and Breaking Inside Till I Shatter & Die. Because I am not a good Mother. I am not a Good “Dog Owner” (hate the term). I am letting my babies down by not being there enough for them. All of this right now, once again, just Feels Wrong.

Not “OK”, like it did before. Like I fought so hard to feel. No. The horror inside I endured for nearly 5 years is back again, and doesn’t seem to anything but cruelly relentless and suffocatingly strong.

 
Utter Shame. Overwhelming Resentment. Clawing & Churning Despair Inside. Extreme Self-Hatred. Suffocating Feelings of Pointless & Being Troublesome. Disturbing Thoughts of Death.
 

I got them all to go away. I chased them out… But they apparently only got as far as a holding pen outside of my consciousness. And a fickle one at that. Now Queue Dragon of Disappointment to come and join in, and sit on my head again. All having a party in my brain, destroying it like it is a hotel room and it’s the band’s last night.

I’m trapped inside it, being tormented by it all. Imprisoned in my head, as well as everywhere else.

I’ve done this. I’ve done this before, and I’ve gotten away. I’ve done this before… so, so many times

… So, why do I have to go it again…?

#depression #quote #drowningfeels #suffocatingfeels #trauma #ptsd #imprisonedfeels #fibroplegia #lost #fibromyalgia #dragondisappointment #despairing

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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.


Dear Chronic Illness/ Pain/Conditions Sufferer…

A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…

I’m so sorry you’re having to endure this — it’s difficult enough to deal with one condition, let alone several and at a severe and heightened state too 😦

The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜

I think I may have some understanding of the awful situation you’re having to deal with — I have had  Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟

As an Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.

Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.

img_0893

I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.

The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….

Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…

The harrowing [emotional] pain, the physical pain, the anguish, the despair, the panic, the desolation, the desperation, feeling like absolutely NOBODY understands, the loneliness, the isolation (whether or not there are people around you), and also, finally, that hollow and numb-feeling of depression that eats away your insides that causes even more anxiety and panic, making the PTSD flare and get even worse.

It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.

*

I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?

I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERY white-hot terrified and desperate you really feel inside.

Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.

The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.

Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.

The next is to put into your mind to not being a “Victim” of any kind to your condition/illness — not having access to treatment or a clinician/GP is going to make you possibly also feel like a victim of circumstance, of the Post Code Lottery; but it still doesn’t mean you have to FEEL like one… It sounds so trite, I really do know. But you *should / hopefully might, eventually* feel entitled and rightful indignation that no one is helping you, that no one is taking you as a person that matters and deserves to have their space and be heard, and helped.

I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?

Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.

💖💖💖💜💜💜


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…?


Does Nothing Ever Change…?

I’ve been to hell and back. I think maybe I’m still there… but at least my life isn’t on the line anymore.
27th January I got taken into hospital, half-conscious, and apparently in a bad way. They found streptococus and staphylococcus in my blood, along with a “horrendous” UTI and a bowel infection. I’m not quite sure how much longer I would have been saveable for.
Luckily, I’ll never have to find out. They saved me. It took 6 weeks of being under their care, during which I also contracted more UTIs and a mystery infection that sent my temperature to 40.9˚C. I hate to think how much Tazoan [sic?]they actually pumped into me, but I’m almost convinced my blood is now mainly made up of that and coffee now…
Sheldon–What Fresh Hell
It is completely disingenuous now to wondering it if was the right call… And, after all, I’m not in as much extreme pain as I was – is was about 1000/10 by then. Now it’s down to 9.9 or 10/10 … so there is a big difference.
However… To what end does it really matter, when you’re half-dead anyway? A brainless zombie who is still in the utmost of pain, lost in the system, broken beyond repair, not even the ghost or shadow of a shell of what I once was?
I have a catheter because I can no longer control my bladder – or feel it. And it doesn’t even want to stay in. I cannot walk or dress or wash myself. I can no longer drive, or shop, or go out, do chores, tidy up. I have no control over my environment because I can barely move.
I have difficulty eating, moving, functioning. I have zero quality of life.
No one would ever keep a dog or a cat in this state. The humane thing would be to let it go. And yet, because I am human, there is no humanity given. Instead, I must just somehow “put up with” being tortured every second of every minute of every hour of every day… for years. Five, to be exact. Well, it will be in a few short months.
Nothing ever changes. Fine – yes, I have painkillers now that make it a little better. But now the new storms have hit (Thank you, Storm Hector…), again. I’ve been rendered completely buggered once again. There is no mercy here. Just tragedy and trauma everywhere you look around. Unable to ever comprehend, never being able to correlate, just whathas happened here to me. How far I’ve fallen. How much has been lost… destroyed… 
Being eaten away, drained of everything I am, by a condition no one seems to know anything about. By one that took away everything I worked my entire life to achieve. That took away everything that I was. Who I was. What I was.
 High Pain DayI fought my way to the Summit of the mountain I climbed, and in one fell swoop I was thrown off, plummeting to the bottom of the deepest mine beneath, crushed, broken… and no one heeded my screams nor saved me on my way down. Now, I am a nothing… and I was so close to being a something… something I really wanted to be.
I was about to achieve what I had wanted my entire life – I was about to join a career-making opportunity, based on skill alone… despite not having a single official qualification for IT, and based entirely on my own brain and ability. Just a brush away from a proper salary, a permeant contract, a proper job. With one of the most incredible NHS hospitals in the country.
All gone because of something no one wanted to stop.
That plummet, bouncing, crashing, falling, spinning, all the way down past the ground level I began at, straight past it and crashing – broken into too many fragments to ever count – onto the bottom of its deepest mine… Looking all the way up… Wondering how in all Gods’ name did I get down there, and how in all Hell on Earth I was even going to attempt to get up, let alone get all the way back up there…
Holding On
Now it’s nearly Five Years hence. It’s been a living nightmare. A waking Hell. Walking the darkest horrors and enduring torturous months and years that Satan himself would balk at.
And I am genuinely wondering why I am here… How I came to be here… How was I ever supposed to be OK with the trauma of being left and ignored for all those years, until I was broken beyond repair. Listened to only because I came close to very nearly not being here from blood poisoning… and only then given a little help. Where were they when I needed it, before I got here? 
Before I was left crushed to dust with nowhere to go, unable to move or walk or even go to the bathroom… Before I needed a wheelchair and my parents to even begin to do anything?
I can’t have a shower unless it’s at a Premier Inn – who have amazingly easy to use img_0904shower wet rooms, and cute, comfortable bathtubs too. I went over 2 months without a proper shower – barely struggled, badly and horribly had one just after leaving the hospital. I only had one when I went to the Blackburn Premier Inn a couple of weeks ago. And I had my properfirst shower since I left hospital on 8th March. And I actually felt happy and relaxed after a shower for the very first time in a very long time.
Funnily enough, I can’t say anything like that about home. It’s not suitable for use. Yes, I’ve told them. I’m not holding my breath that they’re going to actually do anything about it…
That’s the world I live in… From being fully in control of my life, of my existence, of my choices, of everything… I am now at the Mercy of everyone. If I want to wash, if I want to change my Tena incontenence pants, if my catheter comes out, if I want to eat, if I want coffee, if I want to get dressed, if I need medication, if I need something from downstairs – or even from the other side of the room, if I want to use my own goddamned shower… You get the picture. For pretty much anything.
And the most insulting thing? I get paid to be ill. That’s what Disability welfare – stupid PIP and ESA – is … and it is pittance. It’s not even enough to be classed as pocket money. That’s your job now. To be unequivocally unable to do anything. And getting a tiny amount of finances to supposedly help you whilst you walk through the shadows of the Valley of Death alone, frightened, and without hope you’ll ever, ever leave again.
And the Government has the freaking impudence to think that not only can they put a price on that, that the price they choose is nothing compared to what you really need…
Somehow they think it’s enough… And if they think that, they’re either insane or delusional. Certainly certifiably stupid and ignorant.
Back to whence I came… Back to being trapped as a prisoner in my own body. Back to being imprisoned in my room. Back to not being able to wash properly. Back to struggling with agonising and debilitating pain that refuses to allow you to actually even move. Or even breathe.
Storm’s Calling… And Hell Is On Fire Once Again…
  

 


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