Tag Archives: suffering

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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My Pride & The Prejudiced…

I sometimes wonder if there is – or should be – some sort of final timescale in how much suffering you’re supposed to take. How long are you supposed to go on being blighted by something whilst accepting there seems to be nothing for it but for you to continue to endure it?… Forever? A few years? A few months? And if it is forever, should you be made to suffer more for it because other people don’t really know what it is to live through it?

It seems to me that some people rarely get blighted by anything. Their worst worry is whether they can afford a new iPhone, or buy a bigger house, or get that promotion… The more superficial things in life. Things that a few people out there do not have crossing their minds because they’re trying to do arguably more important and simple things these (majority of?) people take for granted – like trying to breathe, or walk, or suffering through chronic pain, or illness. I envy the people who don’t have to worry about these things – who can walk if they wish, and not struggle for breath, and don’t have to fight chronic pain and illness… But I know they don’t understand or particularly care for me.

I have always constantly felt I’ve had to apologise for my ‘delicate nature’ – I have been plagued by things for most of my life, and I’ve not had the kindest reception from most people because of it. Illness is not something that is dealt with well in this day and age – it feels even worse when its the healthcare professionals (who are supposed to be helping you) are the ones who are telling you not to waste their time and ‘get on with it’.

Right now, I certainly live in a society where 100% ‘wellness’ is the only acceptable viewpoint – anything less and it seems you’re not worth anyone’s time. All health problems are supposedly to be dealt with by ‘being active and exercise’… Have depression? Run. Have back pain? Pilates and yoga. If you’re sick, you struggle into work, and subsequently make it worse – and if its viral, you give it to everyone else (… genius). That might be OK if you have the blues – not clinical depression, or if you have a bit of a sore back from slumping at your desk, or if you have a bit of a cold. That’s not so smart if you’re suffering from chronic pain and illness where all that ‘advice’ is going to make it worse. I notice there is no advice out there – or even empathy – for anyone who isn’t ‘generally fit and well’ – and if you want specialist care, you’re more likely to die of old age waiting for it than to receive any beneficial help.

I’ve been turned away from jobs for being of a ‘sickly disposition’. I have struggled through all my pain to get to those jobs that have been offered. I currently have suffered 10 weeks of extra pain due to a rather particularly bad chest infection – which I made worse by continuing going to work through (including a 3-4 hours round trip of travel each day) until I couldn’t get out of bed anymore. The chest infection itself was blitzed by super-doses of antibiotics (about 2 weeks after it started, when I finally relented to see a doctor), but since then I’ve suffered what only can seem to be post-viral exhaustion and quite severe post-viral coughing. Needless to say, it’s been a very long 10 weeks…

To try and maintain a form of life and to earn a living, I once ran on little but very strong caffeine, codeine and alcohol – all to numb pain, get through each day, and manage to earn some kind of living. I lost jobs because I was unwell, I was refused jobs because doctors told potential employers (at the request of medical records) that I was unwell. I struggled and scraped by, just about. But then, that was in my 20s. You can get away with things then… But that kinds of living takes its toll, especially on a body that already doesn’t work very well. And now I suffer for it, even more. I’ve worn it down so completely from ignoring and covering the pain, and doing things anyway, it seems that I’ve come to the part where the consequences for that negligence and struggle are kicking in.

My problems run like a long toilet roll list, and there’s nothing for it now but to actually be strong enough to say, “Hey, I’m a little delicate and I’m not Superwoman – and that’s all there damned well is to it!” … And not bloody well apologise for it anymore. It just is what it is. That’s my lot, and it’s not for anyone else to question or judge. Nice people will understand we’re not all able to be made well and robust…. And, well, everyone else will hopefully give me a wide berth if they don’t want a lecture on empathy and being unsympathetic moronic idiots who are lucky they don’t know what it’s like to be like this.

After about two decades of increasingly failing health and my body slowly (apparently) giving up on me, it would seem that the amount of time you have to suffer these things is whatever you’re life’s agenda is… But no matter how long it ends up being, it always appears infinite. But I have realised one thing, no matter how badly you might want to feel about not being that robust vision of pure health we seem to be led to believe is the only option that is acceptable, letting others dictate how you feel is always the least smart choice you can ever make in your life.

Walk A Mile In My Shoes (1)Remember, it’s your life, not theirs. They don’t have to live with it, you do. Therefore their opinion really doesn’t count. If someone has no experience of something, you can’t have an opinion… If someone who is quite happy bouncing around being all robust and healthy is ignorant enough to tell you to ‘get over it’, remind them of this fact. I had had someone in my life who had no idea what physical suffering or illness was – not a cold or a virus even hit them with anything more than a day of siffles – they were extremely fit, active and healthy, and had little sympathy for my pain… Then they were hit very badly for a few weeks with a devastating (but temporary) condition, where for this short time they suffered some very similar and debilitating problems to what I had. This person made a full recovery and never looked back – but since then I’ve heard not one word of ‘get up and get over it‘ from them. I get nothing but empathy and help from that person now, and they’re always there when I needed… And sometimes when I don’t quite as much. It just goes to show that only those who don’t know will ever think you’re being a weakling or ‘exaggerating’ what you feel. When they walk that mile in your shoes, they’ll never say it to you again.

Until your suffering stops (if you are to be that lucky), then make sure you look after yourself, and other people help you to do so. My very best friend very sweetly tells me I should live in a protective bubble – and I wholeheartedly agree! But if anyone wants to tell me now that I should ‘get on with it’, the best they can hope for from me is to be ignored… I suffer enough and carry enough burdens – I don’t need to carry their judgment and prejudice in my life and have it on my mind as well.

 

 

I’m so tired of being here

Fighting through all my innocent fears

I can still feel that you’re still near

And you won’t let me forget 

The power you once had over me

 

I’m still here in your hands

And I can’t understand

Why you can’t still ever let me go

 

My prison, my walls, my cell here inside

Dear fateful friend of dark tears that I cried

The tangled web of the secrets I hide

Inside my heart, and my mind…