Tag Archives: exhaustion

JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

This just about says it all… 😞😖😢

When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…

It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.

I’m not holding my breath or anything, though… 🥺😞

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TMI

| 9°C |

Overwhelmed. TMI’d up to the hilt. My Mind has been blown to pieces… and then those pieces have been blown up too.

I can’t even… You know, I am buzzing on the inside… I mean literally, like every cell has its own TENS machine or Thumper Wand.

Too much everything. There’s no time to think. No time to wind down. There’s no time to Sleep – and they come with Nightmares anyways.

I’m blacking out – because All of This is just Too Damned Much. I am dying inside. I don’t want to know about any of this. The Pain is Ridiculous. The Emotional Turmoil is Overwhelming and Pathetic.

I need Space. Headspace. Peace – from the Chaos, the noise, the constant haranguing. Something always has to be done. Or noted. Or talked about. There’s always a Ping. There is always someone talking. Then there’s people walking in and out of my room, as they please, talking about stuff they could message me with.

Things keep happening and going very, very wrong… A continuous chaotic cacophony of Mind-Blowing, Brain-Breaking Stress, that just seems to never, ever end

Nothing goes right. Nothing goes easy. Nothing I do is *enough. And worse of all, is that I can’t stop other people from messing with my head, giving me Meltdowns, frightening me, Badly Shocking me, or breaking The Rules and Harming MeDestructive, Harmful, Destroying.

I haven’t stopped. I’ve been going, going, going, and haven’t even barely taken a breath for myself… Everything takes time away from me. There is no rest. There is no peace to steal. There is no respite. There is no Mercy

The Agony… The abundance of TMI… It has me blacking out into hallucinating unconsciousness; one that is uncomfortable and frightening.

Physically, I can’t move. Breathing is difficult. I am “imprisoned” in my Room again. I am Resentful, Frustrated, Hateful, Forced into this… The Agony is Unbearable.

These Feels are… Heavy… And I don’t like them. I only want them to go away.

#pain #chaos #drowningfeels #sensoryoverload #agony #despairing #stressed #drained #dragondisappointment #anxiety #asd #tmi #fatigue #helplessness #aggitated #exasperation #exhaustion #frustration

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A Futile Fibro Flare-Up Day…

Temp| 8°C

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.

Before 8pm, food has no  chance of happening. 😖🤕😣😔

 

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Storm Hannah… Storm Horrible…

Temp: 5°C

Well, Storm Hannah has well-and-truly landed here… My entire body feels like it’s being crushed and outside the wind has been playing up something terrible…

Oh, the lovely Horrible Hannah

😖😩🌧🌧🌧💧💦☔️☔️☔️💨💨💨🌬🌬🌬🌊🌊🌊🤨😒
FECC7D51-E69E-4FFE-8003-338AAC3ABB1A

I truly am in a boatload of pain. Now, between the big storm and the bed that was supposed to help my back but is now hurting it, I’m not even really functional. And my fingers are on another planet of horrible, with all kinds of Paraesthesia running rampant in them. Numbed. Achey. “Buzzy”. Severe Paraesthesia. Difficult-to-Impossible to move.

They can’t even type on the iPad screen keyboard properly, for here. Not just through function, but also because the electrical stimulation in the fingertips is what actually makes a touch-screen touchable. And when fingers are numbed they have a hell of a lot less of it, to make it work. 🙄


Today is clearly as frikked up as yesterday, and I don’t think anything is going to be right with this day, either.

Yesterday was all planned out… Until something went snap. We were going to flip the mattress, change the bedding, and make the bed not try to kill me with pain. I had a huge bag of beanbag beans come specifically for that day, so I could sort out the giant beanbag, and beanbag pouffe, to go with the nice, fixed-up bed.

I even had a Loot Crate box come. Although… I’m mad at them right now, for losing one of my boxes, then being an annoying bitch about it, going around and around, trying to wheedle out of any responsibility for it. I also asked to skip this current month’s crate, but they sent it anyway, probably because I bought a 3-month “subscription” from them.

So, the “skipped” one received is currently shoved in a far corner of the room, because I never really wanted one with a bunch of IPs that I’ve not even played, let alone a fan of, in the first place. And, to make it worse, the box is diddy.


Today is already going the same way. So much Pain. Cold. Storm Horrible outside. Back, Spine (Skull To Sacrem), Fingers, Hands, Head, and Left Arm, all hurting and aching and being horrible a lot. My left arm being in such pain is different, and a bit of a Big Deal, as it does a lot of things… and I can barely lift a coffee cup with it. Not Good

And on top of all that, Dad is out in the storm (with the dogs, if course…), rushing around trying to get emergency Tramadol for me from the Out of Hours system, because Mam accidentally ran out, and only realised last night that there was only enough for this morning in her box.

It was Friday night, so OOH was the only place to turn to.

Thankfully, they ponied up a prescription that could be picked up this morning, so after waking me at 10:30am, Dad left to go pick it up from the Hospital and take it to Boot’s to fill it. All ready in time for next Meds at 1:00pm.

Last weekend, it was my face. This weekend, it’s the Tramadol. I wonder what we’ll bug OOH for next weekend… 🤨😒😒😒

#medication #isobars #anxiety #dismal #weird #exhaustion #miserable #fatigue #weather #storms #healthcare #sad #exasperation #upset #outofhours #fibromyalgia #frustration

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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.


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…?


Keep Going…

Has anyone ever been through this before?! It’s not on the Internet if it is… or very well hidden! My catheter issues are exhausting me and causing even more pain than I already have… but without it, I can cope even less.

That point was proven yesterday, and part of the day before. And today, I’m really suffering for it.

Twice in 24 hours! I can’t believe it came out within just 8 hours… and I thought it coming out 24-72 hours was unnecessarily awful…! It’s caused unbearable pain, in me, who usually can’t really feel anything. I had no choice but to agree with them that the bladder and urethra required some time for R&R… even it it was just for a day, or a night.

After agreeing to leave the catheter out for as long as I could bare it, for at least 24 hours if possible, I did it. I tried and fought and it was horrible. Emotionally, physically, psychologically, it completely messed me up – which was something I did not require during a massive Fibro Flare-Up. Now I’m broken into even more pieces and too exhausted to barely move  – and don’t get me started on the fibro pain and even less moving parts than normal.

I lasted until 5pm yesterday, which is over 24 hours. It was a struggle, and… disgustingHumiliatingExhausting. Shaming. When you’re struggling to manage to change your own paper Grown Up Huggies Pull-Ups every 2-3 hours (if you’re lucky), struggling to move from a Fibro-Flare-Up, when there is no one to help you, when you’re stitting in your own ick because you just can’t move and are unable to – too exhausted to – change, and you don’t sleep. At all. Except for a short catnap between about 8:30 ad 9:30am… if that counts at all…

Eventually, I caved. I had to have it put back in. But it wasn’t happy from the start. As usual. By 1:00pm, it was already seriously trying to wiggle its way out. It’s pressing against… something, I don’t really know, I presume it’s something like the pelvic floor area, maybe?… and it’s setting off this pain like electric shocks and strange body-wide pins and needles and tingles – especially when the bladder spasms and pushes out more water.

At 5:15pm it was pressing so hard it wouldn’t take much more of a hard Release flood to take it out. It was at the 24 hour mark, so it seems inevitable. I don’t win, either way. I need that Suprapubic Catheter ASAP. Except the Urology Department doesn’t seem to be taking much notice of it.

It’s in Retention-Release, despite also slightly draining as well. During the Release, it leaks (bypassing), and creates an immense amount of that pain mentioned just before. It’s so overwhelming I can hardly breathe and makes my eyes really water badly, as well as making me feel quite lightheaded and disorientated. It’s not nice at all.

It’s hanging in there but not my much. One big Release is probably all it will take now…  😦

*

Also I’ve had enough about the OT and social worker. I cannot get anywhere with them, and they won’t talk to me (despite my dad and I leaving messages with them since last week), and thus I have put in a complaint against them with Conwy Services. I’ve also had to call what they call single point of access to request a referral to a new OT. My fourth one now.

This is also along with the fact one of the district nurses thought it was perfectly OK to go and call the incontinence nurse to ask about getting me medication for bladder spasms, and then take that request to the GP all without informing me or getting my consent. I’m hopping mad about it, and she’s not even in today… Naturally. I wouldn’t have even known about it if the GP surgery hadn’t call me to tell me my prescription was ready. So, confused, I obviously ask, What prescription? And apparently it had all been done and dusted for me without my knowledge, my input, my consent. I don’t even know what it is. Or if I have sensitivity or allergies to it, or whether it will conflict with my von Willebrand’s.

Now I have to wait until tomorrow to see what this is all about, and, frankly, expect an apology from them. I’m a very tired and grumpy Lel right now… you really don’t want to get on my sulky side… It’s not pretty, and I will say what I think!


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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