For days… weeks(?)… I’ve been unable to say words in writing. My head aches at the mere thought of making sense of my Feels enough to attach actual words to them…
Dailyos haven’t been filled in (will have to do them retrospectively… Somehow… Using this log…). Even this Journey Journal hasn’t been used for anything much more than a LogBook.
I’ve found this to be a Notably Reliable Indicator of Depression. Not the bad kind… No. The Really, Really, BadlyFucked Up Kind.
What’s been happening over the past few weeks, along with the God-Awful bitter hopelessness of recent times, is ensuring my brain is being cemented into the Wonderland of my Mind… And it seems I am, once again, being packed up and flung down that Rabbit Hole, ready to be destroyed and torn to pieces all over again.
Chaos. Fatigue. Exhaustion. Grief. Confusion. The inability to process complicated Emotional Feels. Not enough time to process Complex Emotional Feels. It all just builds up and up and up, until I’m so completely and entirely overwhelmed…
I am done in… Distressed. Frustrated. Overwhelmed. Frightened. Anxious. Wound Up. Agitated.
I fear sleeping again. I’m not even sure if I know why…
I am am in such a physical mess… And not just the Fibro. Not being able to wash my body, or my hair, or engage in any proper self-care at all is heartbreaking. But it also has an actual knock-on affect in so many other ways, too. You cannwot get properly cleaned with wet wipes. You don’t get properly washed to prevent catheter infections. Taking all your clothes off properly means that heat rash, allergens, creams and oils, groom and backside areas get properly washed, rinsed and sluiced.
I need to get some kind of grip on it… Quickly. Before it become next to impossible to wrangle The Beast back without an all-out war…
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.
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, verywrong. 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.
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...?
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