Tag Archives: weather

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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Physi-Oh… Lordy…No…

The isobars are on the floor again (1000mb tomorrow, and I’m feeling it…).

img_0896I’m wearing arthritic gloves just to type this. My hands are aching horribly (well, they’re crackling, buzzing and being mini-shocked, like their on that electic ball at the science museum, and “clawing”, but “aching” could be shorthand for it).

My legs are even weaker and buzzing and my back in on another planet of wrong – and my abdomen is in constant spasm.

So, in other words, it’s a normal day for crappy air-pressure day. Naturally.

However, what I had hoped for – when that damn physiotherapist finally turned up – was that I would be able to be taught how to help deal with it. To have massaging exercises, or movements, or just help to deal with these day.

You know what I did get? A frickin’ printout that I could (just about) manage 3 of from it. On a really good day. That were already incorporated into my usual practice on my (fun!) DVDs. They could have just saved her time (and damn salary) and just emailed it to me.

stupid-people-shut-upShe poked a couple of times at my leg, asked me to move whatever I could. Then promptly ignored everything I told her and gave me the most basic printout I think she could find, made for people who could move things. It was for stiff and weakened people, maybe older, maybe who have been a little bedridden. It was not suitable for what I had, which was something for perhapse lower-body paralysis or stroke or MS (which is everything that this emulates, and often all at once…). They clearly have nothing specific to Fibromyalgia or Hemiplegic Migraine. It seems they may not even have something for the others either, which is strange and confusing – and entirely unhelpful.

The worst thing is, if they had come when they were supposed to, six months ago, these may have actually been relevant… a little. But now, that ship really sailed. Off into the distance, beyond the horizon, and far, far away…

I’ve done more for myself – found actually appropriate exercise DVDs and a great YouTube yoga video – all of which are both helpful and fun, all from my chair, with some on the floor. I found better stretchy bands than they were going to give me. I have hand weights. I wanted help going further, going forward, with better things, more intensive things. But… no. Just stuff I’d already covered, if I could do it. God only knows what help people with even more debilitating conditions or paralysis get from these people, they just don’t seem to have a bloody clue.

I don’t know whether it’s severely OCD “Heath & Safety” rules that I don’t know about, or whether they’re just idiots, but they’re really not helpful. Just next time, don’t bother me and email the damn printouts instead…

About the only thing I got that was useful was that she confirmed that it was not safe for me to even attempt to walk (and oh, I am so not making that mistake again now…!) – which will be handy if the PIP thing gets awkward again (but I’m fairly sure there will be no lying this time, at least). Otherwise, I’m not sure what use they are to me…

Carry Me

 

 


28 June 2017

Completely exhausted… Got an hour, maybe and hour and a half of sleep. That’s actually better than some nights where I don’t sleep at all and stay awake for 48 hours straight, but nevertheless, I still feel horrible.

The isobars are minuscule. As of now BBC Weather app and AccuWeather, they sit at 1000mb, which is devastating. And I’m pretty sure it’s not just to me.

I can barely think or function on days like these. It strips of everything… frighteningly so. There is no functioning – physically or mentally – on these days, and there’s nothing for me but staring blankly into space whilst the telly talks to itself. Usually crime things now I have TVPlayer on the Amazon Fire Stick. The buzzing deep and electrifying “achy” type pain is horrible and at least 9.5. The exhaustion is about 1000. I cna’t really be upright – shuffle-walk or stand. Everything that involves being alive is horrible, actually unbearable. Almost as unbearable as t he advert infomercials I’m being overwhelmed by and attacked with right now…

There’s the hot-and-cold, the heavy flu symptoms, heavy cement in everything cell of by entire being – including hair, which feels like a dead cat is spilling on my head. I’m in a stupor. Crawling to the bathroom isn’t fun (particularly when also incontenant) and especially when you’ve got one [right] leg that just doesn’t have a clue.

I  wish there was something I can do about it, but everything thought up just doens’t go far enough to make isobars this low feel like nothing, It’s about putting up with it, at least for now. Unfortunately.

 

 

 

 


25 June 2017

 

The weather strikes again… It’s June, for crying out loud – surely I deserve a break at some point? The isobars are down to 1011mb today (thus far), and will be falling all the way down to 999mb by Wednesday. What on earth is going on here?

Summer was apparently a few days last week. That might probably be it – but even then, the high isobars were only a couple of days in total. I feel like I’ve been made out of electrified cement.

I didn’t sleep last night (Again). I’m so exhausted. My sleep patterns have been all over the place – so much so I’ve been passing out from exhaustion into (yes, literally) unresponsive unconsciousness for hours. In all honesty, right now, there’s probably a good chance this will happen again – despite trying to stay awake at least just long enough to watch the Queens Club Tennis finals. I missed the entire Quarter Finals because I somehow passed out and didn’t wake up until around 7pm… I’m not missing the end game!

It’s annoying having all this energy to waste that I can’t do anything with anyway, then the Isobars drop so much that you can’t even move at all hardly, making things even worse. I’m going stir crazy, all pent up, climbing the walls, being unable to move let alone expel energy, and now just staying conscious is becoming an issue. I’m actually buzzing inside, and I’m getting ready to start chewing the furniture at this rate.

Because of this, I also find it pretty much impossible now to do anything that involves relaxing and lying back or down. Not just sleep, but reading, writing, even playing games, gets to be impossible, because you just want to go outside and run about – or in my case, wheel really fast around everywhere. That’s if the Isobars agree, that is…It’s so hard to move when you feel made out of cement. I also don’t have an appetite anymore because I’m not burning much of anything off. Imprisonment is not fun.

I have no idea when the chair is coming, but quite frankly it cannot come soon enough. I’m literally being rendered unable to do much of anything because of all of this, and watching TV doesn’t count. At all. I need burn off all this excess energy before I chew through all the furniture and move onto carpets and shoes.

 


Never Rains But It Storms…

On 14th February 2017 I received a text message to state that a PIP update form I sent them two weeks before had been received. Today, on an already-terrible Summer Solstice day, I received a letter package from them – over four months later – to go and see them next month.

I’m scared about this. I’m barely managing as it is, and this is terrifying. You hear on the news of these so-called Health “Professionals” being downright terrible and respectful, even abusive, about their “clients”. About them meeting targets by writing off the sick and the vulnerable. About how they force you to go to tribunals to get what you deserve. What little that is, anyway. It’s not like PIP is a liveable amount, not when even simple things you need are so expensive (clearly no one at PIP has ever been to Ableworld or had to personally finance things the NHS either refuse or never get around to). They’ve even written off a friend, taking everything away, despite her having all the evidence and more required to prove how ill she is.

It’s a terrifying prospect having to meet them again. The last time was several years ago, when I lived in London, about a year after I  became ill. It was one of the most stressful times, and my best friend was my amazing rock and I will be forever grateful to her for all her help around it. We travelled to some place I’d never heard of quite far out of London, and had to pay (a horrific amount, about £90) for a cab both there and back. I had to go in my first god-awful wheelchair, which was so uncomfortable, and we were forced to wait for hours to be seen.

I was so ill when I went in to see the person – some guy who was an uninterested and arrogant sod, who also took no interest in the fact I was there in a wheelchair and clearly traumatised. I shouldn’t have gone in there alone, but I did… and it was only to my detriment. He basically lied about a bunch of crap, played everything down, and then the outcome was I barely scraped enough to cover basic Standard Daily Living. I saw red, got help to make an appeal, and my friend and I eventually went to a tribunal. They awarded me Standard Mobility as well, without question. It’s was so horrifically stressful to go there, but at least this time I saw three older, highly intelligent women who had reached the top of their professions. To them, it seemed it was a no-brainer.

So… I’m not looking forward to seeing some other inebriate again.

Arguably, I can at least say that it seems like they read my dossier that I sent with my update form. I rather expected they wouldn’t. It was rather the tome… But in the 4 months hence, things have become even worse, to the point – as we all know – where I’m imprisoned in my own home until I (eventually) received the special chair that was ordered. You know, the one that’s not going to try and kill me. I even had to push back their original date (3rd July) for another, where – hopefully – said chair will have finally arrived (with the new date being on 12th July). So… in three weeks’ time then, give or take. That better be long enough, because if I have to go in the other one, I’ll probably just die and it won’t matter what the hell they think then.

Once again the paperwork has to be dragged out (another tome of reading!) for them to photocopy (Lols… their time and dime, and karmic punishment, quite frankly, for not realising it’s the 21st Century and everything’s digital) and hopefully read at least some of. I’ll throw in pretty much everything for good measure – I always do, you never know what rubbish they’re going to be looking at whenever these things turn up. At least then they can’t complain. Or say you didn’t tell them, finding a nice, tidy loophole to wriggle right out of. It’s bad enough that my chronic conditions are weird and no one understands them. Hopefully, these whackadoodles will, and will see that I unfortunately cannot manage their general expectations of someone who qualifies for “Standard” anything on this.

I honestly don’t care about the money. Yes, given how ridiculous prices are compared what you don’t have to spare, money can be rather handy. However, I prefer the recognition. Where they stand there, nod, and acknowledge I go through this, that I must live and struggle in this way possibly forever. That’s what I really want.

It’s wasn’t as if today wasn’t bad enough, before all this, having not slept all night due to paraesthesia and hyperactivity due to my confinement (again… Haven’t slept properly in probably a week) and suffering “Isobar Flue”, thanks to them dropping down to 1011mb and bringing huge storms along with them to suffer with. The storms are on their way as I write. I hope they’re not bad enough to be named… I certainly do not require such turbulence now… nor am I now in any position to cope with it.

I’m so upset now, I’ve got through at least 5 gluten-dairy-free chocolate chip cookies. At least there’s no ice cream…