C.A.L.L. FOR Wales
Category Archives: Isolation
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 head. Depression, 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 brain. Shaking, 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.“
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 worked, they 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…!)
Queue: Hatred, 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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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.
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 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/and) Alexithymia. 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.
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.
Today is the anniversary of when I first was taken into hospital…
On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.
Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖
My brain is trying to process it, rather unsuccessfully, to be honest.
However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.
To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯
A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…
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… 🥺😟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.
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…
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.
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 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…?
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.