Tag Archives: illness

(Happy?) New Year

It’s 1.04am.

It’s 8th January 2013.

It’s been a long time since I posted because I had nothing to say. Just pissing and moaning, no points or matters of interest.

On 30th November 2012, my granddad, who I loved indescribably, died.

That day, I stopped “getting back” to being me again.

I started being me again.

My Gran-Gran wanted the world for me.

The only way I can have the world is to go out there and get it.

I can’t give up hospital visits or quit EB as resolutions.

But I can promise myself that, on days when my body is in my control, I will live.

I will push myself.

I will reach for what I want.

I will stop letting myself down.

I will give myself to the eternally occurring question – “What are you doing at the moment?”

I will make starts, because that’s the only way I will ever finish.

My notebooks and pens will no longer simply be clutter.

They will hold plans, ideas, stories, sketches, the contents of my brain.

Photo albums will show me living.

I will smile real smiles.

Because when I’m sat on top of the world, I’ll be the closest to Granddad I can be.

I’ll make you proud, Gran-Gran.

I’ll make that life you would’ve handed to me if you could’ve.

And I’ll write all about it here, too.

When I have the time…

Happy New Year to you all xx

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Filed under Catching up, People Power

About last night…

In around thirteen hours, I’ll be heading off to hospital. It might be earlier, if things get worse, but I hope not.

Really, I should be in St Thomas’ A&E now, but there won’t a doctor there who will know what to do with me, and I really don’t want to spend another night in the Clinical Decisions unit. One night, three years ago, with an elderly man snoring louder than I thought was possible, and a heroin addict throwing tables around because he wanted Methadone, Dad awkwardly asleep in an upright chair, Mum curled up like a cat at the end of my trolley. No, not again.

So in about eight and a half hours, Mum will call the specialist nurse and tell her I need to be admitted. She will start the arduous task of securing a bed for me to collapse on to, and the Specialist Registrar of my Dermatologist will ask Microbiology which antibiotic needs to be pumped into my bloodstream, to force the infection out. I’ll be begging them for every pain killer I can have.

I feel like a failure. I’ve always had a sky high pain threshold, eschewing pain relief in favour of distracting myself. Music and a good book are my preferred methods. But I have never known pain like this, and even my strong opiate pain killers aren’t really helping. The fact that I’ve cried with the pain has been my parents’ indication of how much pain I’m in.

My right foot has myriad ulcerated wounds on it, and some are on areas that were already severely nerve-damaged. Imagine how an ulcer on your tongue feels… Now imagine that ulcer is four inches long… And it has siblings, all over you tongue, cheeks, roof of your mouth and gums… Now imagine someone is pouring vinegar over them, and they are so deep you can sink your teeth right into them. You’re getting close to how this foot feels.

On top of that, my Bipolar Disorder has reared it’s head. It didn’t occur to me last week, when I was a cheery and getting lots and lots done, that I was in a manic phase. I just wanted to think I was happy. Well, I obviously wasn’t, because the Black Dog has its paws wrapped around me in a vice like grip. I was managing to tell it to shush and be a good doggy when I was with people, or chatting on line, but tonight it broke free.

To be clear, I don’t think I’m unlucky, or that I have an awful life. I am so grateful for everyone I have who, for whatever reason, love or like me. I have a home, food, clothes, luxuries like the Internet and my iPad. I have healthcare, and some health. I could have a far worse disability or illness. I do thank my lucky stars, for all the good things I have, and all the bad things I don’t. So what I said wasn’t for my benefit…

I sent a tweet in which I said I thought I should let the infection take over, finish me off, and then my lovely, wonderful parents could have their freedom. And I meant it. It wasn’t a cry for attention or help, it wasn’t that I wanted my ego massaged and to be told how great I am, it was, is, what I felt/feel is best. My mum was sat in front of me, still wading through my dressing change, and I wanted better for her. I wanted her not to have to worry, not to sleep on mattresses by my hospital bed. I wanted she and my dad to go to bed at the same time, to travel and have fun together. Without a bandaged burden to consider.

But, for some reason, they won’t let me go. And I can’t go without their help.

So you’re all stuck with me for now.

I wanted to say a huge thank you to everyone who sent kind and concerned tweets, who offered support and prayers (I might be a non-believer, but I do appreciate people taking the time and having hearts open enough to pray for me. I’m sending love and good wishes back to you). And though I don’t believe any of the nice things you said, and probably never will all the time I’m a Bipolar Bear, I feel incredibly lucky to have made such fabulous friends via Twitter.

I hope you all know how lovely your hearts and souls are.

With love and thanks
M xxxx

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Here comes the hurricane

It’s 6.04am, and I’ve been awake for about two hours. I’m laying here in my bed, listening to David Ford (“So close your eyes and sleep” – I wish) and writing this in the hope that I’ll suddenly overload my desperately tired brain until it gives in and switches to standby. My legs, thanks to twenty-five years of nerve damage in my feet and as much joint damage in my knees, and despite making me pump large doses of Gabapentin – supposedly meant to make my extremities behave – will not stay still. They jolt, shake, compel me to wave them around, pound them against the pile of pillows beneath them, cycle them in thin air and pace silently around my less than spacious bedroom. I once read some know-it-all stating that “Restless Leg Syndrome was invented by drug companies to encourage idiots to buy placebos”. Right now, I would like to aim one of my involuntary kicks at his bollocks.

Okay, maybe, as Mr Ford is quietly singing into my ear, I should “cheer up, you miserable fuck”, but some days – especially in the early hours – the frustrations of being ill and disabled are harder to bear.

As I lay here, yawning and fidgeting, I have Philip Davies MP on my mind. He and his ilk have been making women and men writhe and scream, cry out and sigh in their beds for years now. Purely out of disgust, fear, stress and desperation. We know that this government, and so many others, will “sell out our kids for a tank full of gas…let the economy crash”, to keep the working classes, the poor, the ill and the vulnerable in their places. Right at the very bottom of society.

Mr Davies thinks that, to give myself a chance of employment, I should agree to work for less than the minimum wage. Maybe he is right that, wrongly, a potential employer would choose a less experienced or skilled but able-bodied person over me. And to be honest, right now, I wouldn’t blame them; as I’ve written before, I’m hardly a desirable employee because of the way my body plays tricks. But there are so many ill and disabled people who are, and whose expertise and skills are going to waste. Why not give incentives, if that’s what it takes, to businesses who enable disabled people to work, whether in the office or at home? Over the course of a single year, that expenditure would surely be counter-balanced by a reduction in benefit claims. I have disabled and ill friends who could start their own business, to be run from home, if they were leant a start up grant, to be paid back over a fair period, with base rate or no interest. No bank will give a benefit claimant a loan, but they aren’t vilifying us. We might not function – physically and/or mentally – the way we want to, but we are people, and we deserve the same rights as the rest of the population. So, Mr Philips, “will you just laugh and say I’ve got it wrong? Will you tell me what the fuck is going on?”

Every day we hear another story of another calamitous cock-up by ATOS. How hard is it to understand that putting people with serious health problems under a huge amount of pressure and stress will only make them worse? It’s easy to imagine them saying “heart problems? Let’s give you a cardiac arrest! Epilepsy? We want to see you fitting on the floor! Emphysema? Cough up half a lung for us! Then we’ll believe you”. Of course, we need to do what we can to ensure that the system isn’t abused; no truly ill or disabled person wants to see some idle cretin making a career out of the lives we never wanted, but not at the expense of the vast majority of people who do need help. How can these “tests” by ATOS be defended when people with late stage cancer are being told to return to work? It’s becoming clearer by the day that “‘This train was armed for collision” because “‘clever’ men know all that and all this and they will talk and they will talk, but they don’t fucking listen”.

Oh, Mr Cameron, “what a model of Christian behaviour, preach on with the message of ‘go fuck thy neighbour'”. Let’s be honest, we all expected this from the Tories, but having been kicked in the stomachs by the Lib Dems, Labour are coming to spit on us as we lay on the ground, coughing up blood. You see, “I believe lots of those calling the shots have no respect for the rights that we’re given….and I believe lies cost God knows how many lives, while some rich people made more money”.

Dear readers, “I wouldn’t have it all easy, so come on, let the hard times begin. Let’s kick through the hole in the wall of the mess that we’re in”.

“This is a call to arms”. Come and fight with us.

I’m off to get some sleep…if I’m lucky.

(Words in quotation marks are lyrics written by David Ford)

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Filed under Disability, People Power