Still can’t think beyond the pain. My brain is zoned out.
I’m in no shape of, or for, anything.
Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.
Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.
It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺
There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.
I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢
I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔
… I could really do with her right now…
I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…
I’ve been rushing around checking into, and booking, Premier Inns…
Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
I’ve had a good couple of mini-ish Meltdowns caused by other people…
My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.
There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.
NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.
Well, I’d probably say the graph says it all, how my last month went. Seeing it like this, though, is a bit of an eye opener. It’s really no wonder I am a mess, of this kind of emotional chaos is what I am living with… I think this was what I wanted and expected out of using Dailyo — but it’s rather different when it ’s actually there, right in front of you.
The only shame is you can’t sync it through different devices… that part is annoying, but the rest of if it is pretty great, actually… 🤔🤨😎
It’s disturbing how all-over-the-place the peaks are. It’s there, in front of you, undeniable. It wasn’t OK. It was Chaos, Brutal, Upsetting, Difficult, Emotionally Unstable… Destructively Unstable… I realise now how strong, stubborn, I’ve had to be, in the wake of that chaos… The reason I am so, so very Exhausted. Run-Down. Severely Hyper-Vigilant & Easily Startled. Anxious As Hell 24/7.
The last thing someone who craves… Needs… emotional stability, is this… I am ASD, with (probable) Alexithalmya. What I need is is for that to be solid in Green.
Green means Neutral. Not Happy. Not Sad. Not Scared. Not Angry. Not Anxious. Neutral. What I’m seeing is, quite frankly, the exact bloody Opposite!
I am aware there is no ideal, per-se… However, it cannot be too much to ask that it remain at least somewhat in the Green/Neutral area a little more than twice in one month…?!
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
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.
It’s 12.21pm — Sitting in Table Table, heavy nausea in my tummy, not enough food or coffee anywhere near me, miserable because it’s my own fault I’m here right now, and wishing I was still stuffed in my bed, either awake or asleep.
All my fault because, apparently, my brain thought it was a good idea to not close the stopper on my cath leg bag last night, causing it to leak all over my side of the bed. And then, just for good measure — you know, because that’s not quite enough destruction — I spilled half a cup of coffee over the side of the bed too. Whoopee. Yey.
Context — I’m in Table Table with a companion, S. We’re in Caearnarfon Premier Inn, to celebrate our joint birthdays (born exactly one week apart, precisely the same year). Sounds Strightforward, right? In theory, absolutely. In actuality…? Oh, Hell No!
It was all going to Hell in a Handbasket before then, anyway. That was the main reason for going — some R&R. Except, from even before we left, it was all going wrong. It should have been a sign. But since it wasn’t bight, neon, and flashing in screamingly-loud electric-blue… I missed it. And, so, the games began. Nothing has gone right, and this is the latest in the boo-boos list. And relatively speaking, not even that bad.
… I’m sure there are many, many more of them still to come!
So, we have been forced to allow housekeeping into the room. Therefore, I am hiding from them in Table Table, until the coast is clear to return to the room, and the scary strangers are gone.
… Dear Gods and Spirits, I feel like crap. I wonder if this is what hangovers feel like…? If it is, I finally feel sorry for the bastards who have one — although, theirs were knowingly self-inflicted, and mine was most definitely not. I would never knowingly do anything that did this me!
13.50pm…. Finally returned to the room. Only… Nothing has changed. Except a towel that was on the floor for them (so they know it’s to be taken) in the bathroom was removed. I’ve done a better rush-job at making the bed whilst in a super hurry than they did now — it looked like no one had even bothered, to be honest. I’m not sure they had, since I’d also made it this morning.
Cups changed. Towels changed. Bed linnen not changed. Have I been in hospitals too much, or in posh overseas hotels too much, or do Housekeeping just not change bedding anymore…?!
This was a pointless morning; they did nothing useful….!😟 I’d have most certainly been better off staying in bed and not killing myself trying to get out of this damned room before they got to it…
So… that’ll be one more boo-boo to add to the list!
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 … 🤯
Over-enthusiastic Gamer, Goth, Geek, Techaholic, Dabbling Writer & Blogger, and Raging Coffeeholic ~
Loves Gadgets, Games, Tech... And Coffee. Lots and lots of coffee.
~ Obsessively-loving: Dragon Age Series, Mass Effect Triligy, The Witcher Games, Skyrim Special Edition, Elder Scrolls Online, Divinity: Original Sin Series (amongst others!) ~
~ Self-Built Gaming Rig: i7-4970K, 16GB RAM, 128GB SSD, 1TB + 3TB HDD Storage, GTX 1070 8GB OC, 1150 ASUS Z97-A ATX mobo, Windows 10
... Oh, and did I mention I love coffee...?
On the surface, Anthem really does look like a Destiny family-member (or clone)… Gone wrong. But at least I did get to play Destiny… In reality — at least going by this experience — it’s a weak and badly managed, and the demo was a bad one indeed.
I have played 157 hours (over 3 characters) in Mass Effect: Andromeda now – and after all that time and 2 major patch fixes (this is v 1.06), this game is still… weird. For instance – expressive slowdown whilst on the main ship, The Tempest. Everything on there slows down – whether or not it’s […]
New graphics card. New Game. New Challenge: To get Mass Effect: Andromeda to run at 4K on reasonable graphics specs with just one little GTX 1060 6GB graphics card by NVIDIA, built and overclocked by ASUS: ~ PC ~ i7-4790K ~ 16GB RAM ~ GTX 1060 6GB OC ~ High/Ultra Specs ~ 4K graphics resolution~ […]
~ The Joy of Inability To Copy Over 4GB to USB ~ … And queue sarcasm radar to shatter into a thousand shards of agony… Note To Self: Always re-format idiot FAT32 format drives of all and any kind. Fancy having a system that can’t transfer over 4GB! What kind of world […]
I loved my Wileyfox Storm. I really respected their stand against general mobile phone manufactures. But now they have clearly lost the plot – and in this instance a once-loyal customer too. I literally got my Swift 2 Plus handset today (day of writing) and I can’t even get it to charge. Nor did it […]
Using Split Screen Safari in iOS 10 … Including how to get back out of it! Go To How To Geek And how to get out of it…! …to go back to a single Safari window is to tap and hold on the tabs button in either Safari window. Select “Merge All […]
With Mass Effect: Andromeda, it’s a tricky thing to handle when pushing 4K specs on a mid-level graphics card. It’s not a baby, but it’s not racehorse either. It’s getting to be an older rig now, with the high-end Devil’s Canyon Intel i7-4790K processor, 2x 8GB of RAM, Asus Z97-A board, and now a NVIDIA […]
NOTES TO SELF: Mass Effect: Andromeda is fun, exploitative, interesting, and has an immense amount of subtle Easter Eggs nodding to the original ME Trilogy. It even gives you a Space Hamster again – albeit and Andromeda one this time. What it is not, though, is stable. The NVIDIA graphics have been all over the […]
… Come Back, Mako – All Is Forgiven! Project Overlord Oh, Bioware – there are no words… I had forgotten just how awful this was. Not the thing in and of itself – but that damned M44-Hammerhead. The flying Mako. Making the Mako look like it’s the best thing ever. The controls are not terrible… […]