Before We Begin…

Gah! I’ve been trying to write this blasted blog for so many months now, and it is driving me crackers! How many of my Facebook friends have heard me say that I’m working on it, not knowing that I’ve written the equivalent of two Word pages, and deleted the whole shebang, about seven times every time I’ve attempted the sodding thing? That’s about…oh, I haven’t really kept count…erm…*tries to remember the times table*…four hundred and eighty pages!

Right, this is the situation: I was very, very ill last year. Most of you know that. What you don’t know is how and why I got into that state. The state being, at the end of my stay in hospital, expected to die within the next 24-48 hours, and deemed no longer able to be helped, much less saved, by medical intervention. A scary time for a lot of people it seems (thank goodness for my family and friends), except me, as I had no idea whatsoever what was going on during the worst of it.
To recount everything that happened takes a bloody long time, which is why I’ve been struggling so much. Where do I start? How do I start? How do I write it? How much or little detail? Having to be open about private things. See? It’s no easy feat.

There is a reason I want to share what happened – not to get sympathy or to be called brave (let’s be honest, all I did was have my organs go bum upwards!), no. What I want to tell you is a cautionary tale; we (me and my family) have learned a LOT during and after our Series of Unfortunate Events and, frankly, I would far rather pass on our lessons than have any of you lot out there in FB land, with or without EB*, learning these lessons the way we did. Because it was horrible, painful, scary, isolating, bewildering, depressing, debilitating, life-affecting, and “downright f***Ing dreadful” (description courtesy of one of my parents). That’s why I’m asking that you read the blog post, when it comes along, because it might just mean that you don’t have to go through weeks of misery.
It is not intended as a horror story, okay? It’s intended as a “this is what I wish I knew”, but I have to tell the story to be able to tell you why I wish I known several things.. *and breathe*

*(though I suppose folks dealing with EB [EDIT: And my ’Spoonie’ friends, who have visible and/or invisible illnesses and/or disabilities. If I’ve termed that in a way wrong or offensive, do let me know, please?] might be more likely to find it useful)

I’m going to say TTFN, and get started on the main post, but I’ll just let you know this: coming next is a weeny post, explaining two things that will pop up in the main blog post – one repeatedly – and you really need to know about them for the proper post to make sense. I want the big ‘un to flow well, I’m going to get those out of the way first.

 

‘See’ you again soon
xxxx

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The Wanderer Returns

Jeez, it has been a scarily long time since I posted on this blog. Or any blog, for that matter. It’s not even that I’ve had nothing to post about, although some…occurrences I’d have to bite my tongue about, however much I’d like to make them public… No, it’s not that my life has been a big old nothing, it’s that, for various reasons (depression, anaemia, my skin sucking up all of my bodily goodies to heal itself, leaving me all drained and raisin like), I haven’t been able to find the words for all that has happened in the time I’ve been AWOL. I couldn’t un-muddle my head enough to commit my tales to paper – vellum or virtual. No pen, however pretty, never mind the ink, could drag the terms I needed across the pages. And I don’t know if I will find them now. Or, more importantly, for what I want to write next.

That is what I know any one of my friends and family want to know, to understand: what on earth happened to my kidneys to land me in the ICU?

I want to write about it for myself, too. A catharsis, and a way to get my head around it all. However, not only is it a real saga, I’m still recovering from the kidney failure and all that came with it, plus still in need of at least two pints of blood to fettle this damned anaemia. So it might take me a little while to get it all out there.

(I know I never managed to write the posts about EB, but that doesn’t mean that I don’t still fully intend to write them!)

So…stay tuned. The big story is coming.

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EB Awareness Week 2014 Begins!

EB Awareness Week 2014

This week, from the 25th to the 31st October, is EB (Epidermolysis Bullosa) Awareness Week.
Most of you who are friends with me, offline and online, probably know what my skin disease is called, some of you might even know what causes it, but to play my part in raising awareness, I’ve decided to write a blog post explaining not just EB, but my life with it, and the treatments being worked on that might allow me, and most importantly babies and children with EB, to know what life is like without it.

As part of me trying to raise awareness, you can ask me any questions that you have about anything at all relating to EB, how it affects my life (short and long term), my bandages, what’s underneath them, the worst parts of EB, the “best” parts (what could be known as “EB perks”, as Fault in our Stars talks of “cancer perks” I suppose, like which bands I’ve met or how many times I’ve ridden a theme park ride without having get off and queue again (and from which ride did my friend Angie nail an obnoxious, insult-hurling, teen in a queue between the eyes with a pack of chewing gum that he’d thrown in the first place? That’s an EB perk for ya. An hilarious one, at that!), what I wish I could do, what I’m most glad I can do, what surgeries I’ve had and why, my ‘bucket list’…anything!!!! Even if it’s saucy, very personal, emotional, if you ask, I will tell*. You can ask ‘anonymously’ in that I won’t post your name, and you can ask after reading the blog(s); I’ll update them with my answers.

If I talk about friends, particularly those who have passed away, I will change their names if I can’t ask the person or their parents for permission to tell the story first. So don’t think I’ve just forgotten their names! Even I’m not that porridge brained yet.

I *think* that’s all the whys and whatnot, so I’ll make this the first part, with all the technicalities, so I’ll post this, then get down to the blister business!

Mel xx

*If it’s a science-y question, I’ll answer the best I can, probably with thanks to Google or, hopefully, and far better, with knowledge imparted by lovely researchers and/or doctors, EB nurses et al.

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Filed under Catching up, Disability, EB Etc, Musings

Dear me.

It has been so long since I last visited my little blog, I had to battle through cobwebs, and brandish my feather duster, just to find the poor thing!

I am a rather unreliable blogger, aren’t I? Two pretty (okay, very) grim years left me short of anything much to write. Except misery and moaning, and, I thought, as the saying goes, if you can’t say anything nice, don’t say anything at all. No one wants to read post after post of whinging, do they?

Though…one super duper amazing thing happened to me last year, but I got all shy about that…and still am! However, prepare for a post about him, I mean that!, very soon 🙂

Someone (*cough* look just above *cough*) recently told me to get posting on my sad, neglected blog again, and I accepted that instruction as a challenge of sorts.

Please, do bear with me as I tone my linguistic muscles up, try not to waffle about what I had for breakfast, whip my ideas into shape, and get my brain back into the blogging game.

I *will* be back soon!

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(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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To bleep or not to bleep

Hey all,

As my friends and Twitter followers will know, I have a fair bit to blog about, and hope to do so very soon. But tonight, I felt compelled to tap out a quick post about censorship on TV.

After Doc Martin and the ten o’clock news, there was a show called ‘Exposure’ on ITV1, featuring a rule-breaking bailiff. It was really only background noise, as I was reading whilst waiting for a show to start on another channel, but one word in particular made my ears prick up, and my eyes meet the screen.

Before I say why, it seemed to me that this bailiff seemed to get a kick from wielding power over people who owed money, using intimidation, threats and humiliation to get what he wanted from them.

In his case, he was collecting unpaid Council Tax. Yes, it is unfair that the vast majority of people do pay it, and yet some decide the don’t want to and won’t. But others simply cannot pay, maybe because they have been made redundant, their business has collapsed, or they have found themselves seriously ill or injured, and are still wading through the bitter treacle and jumping flaming hoops – also known as the process of being allowed benefits.

The attitude of this man was aggressive from the outset, telling his “apprentice” – an undercover reporter – of ways to get clients on their “f*cking knees”, proud of his knowledge, and seemingly violent, methods.

“Fucking” was edited as above, where his low, conspiratorial voice necessitated subtitles, and the spoken word was bleeped out.

Fast forward a minute or two…

“There’s no toilets in garages any more because Pakis don’t like cleaning them.”

Neither the subtitled or spoken word was censored. I couldn’t believe that such an incredibly offensive word was there to be seen and heard. Not just once, bit repeatedly.

Yes, I understand that fuck is still an offensive word to many people, but the show was on past the “watershed”, even before which, fuck can be heard on TV shows and films.

The P word, like the N word, is offensive to a entire race and nation of people. Remembering a girl in my class at secondary school being made to cry by other girls singing a cruel song containing the word, I quickly switched off. Just as he decided to speak in a supposed Pakistani accent, and harass a man who didn’t even live at the address, stating “if this happened where you come from I’d be in ‘ere with a stick and you’d be up against that wall.”

I’m sure some people will have an issue with me saying P and N words, but they are not my words. I know people of my colour have, and do, use them to create hurt and humiliation. I haven’t censored funk because, largely, I find it inoffensive.

I believe censoring fuck only makes it seem more offensive than a word that has caused thousands of people emotional and mental pain, and I don’t believe that is true.

I’m sure ITV1 had a good reason for exposing this man, and others like him in his business, who constantly and flagrantly breaks out of the guidelines allotted to bailiffs. I hope it will shame those who are at the head of the industry into creating serious rules, and punishments for those who break them, particularly when violence and racial assault is involved.

But they should be ashamed of their censorship failings. The P word is not one we need to hear on TV, unless come from a Pakistani person, as with the N word coming from a black person. I believe they own those words know, reclaiming them from those who used them as weapons.

I wonder, readers, which words do you think should be censored? And what do you think about the censorship in Exposure (oh the irony!)?

Let me know!

Mel

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This little piggy…is getting the chop.

Today (Tuesday – you know my rule about days changing), I went to see my Orthopaedic surgeon again. This time, along with parents, my lovely EB nurse was by my side, too; the surgery being discussed wasn’t just new to me and my family, it also was new to the surgeon and the EB team. Oh yes, my feet were stamping on new ground.

Miraculously for an hospital appointment, I was called in a bit early! Well, my mum was; the room was titchy, I was right by the door and the SpR wanted to go through my medications, which my mum knows far better than I do *shamed face*. I and my dad were soon escorted into the room next door, where my tootsies were to be inspected. As we sat there, Dad asked if I was okay and, out of nowhere, tears burst forth. What if the consultant had changed his mind, Dad? I hate them. I truly hate my feet, and I need something, anything. Luckily, in these situations, Dad Hugs are the best treatment, especially when accompanied by a kiss on the head, and comforting words muttered into your hair while tears rain onto his jumper.

We undressed my feet, and the SpR soon came rushing in, eager to have a look at these little freaks, only before seen on the most bizarre x-ray ever taken. I don’t think he’d ever seen EB, or even heard of it before I first went to the clinic a few weeks ago, so he had a good look from every angle, “hmmmming” away in between asking me questions. I was glad he took such an interest – EB usually scares young doctors more than the debt they’re in!

Next in was the consultant, a lovely man who had given me some hope that my feet could be made more tolerable. He was almost excited to see my feet without their dressings, claiming he’d been waiting ages to do so (fibber – it was three weeks!). Again, much intense peering at my piggies, asking exactly where my pain is and exactly what it feels like.

No one has apparently ever seen toes do what mine have done. I’ll let you see the x-ray at the end… It shows why so many questions needed, and still need, answering!

I absolutely despise having my feet touched, as no part of them feels normal, either hurting like all hell or making me cringe, heave or jolt away. So I was amazed I didn’t panic when I saw the gloves going on, or pull away as he reached out. I realised, in the back of my mind, as I was letting him feel my most icky foot areas, that my feet had crossed the line from being so painful I wouldn’t have them touched, to being so agonising I would do anything to get help.

He had a gentle press, pull, poke and prod, carefully twisting my feet to the angle they should sit at (a scarily long way from where they do). Thankfully, he remembered exactly where my most terribly pain bit is and pulled his own hand away before he touched it. I couldn’t help but smile at my mum and EB nurse, who were both tensed and ready to pounce should he cross the line in their minds.

He confirmed that I am walking on my bones right under the skin; most people have pads of fat in the pressure areas on their feet. I have none at all, which explains a lot of the pain. Another new one for the surgeon!

Out came his iPhone for some snaps, as we exchanged questions, and a decision was made. He would take bones from the toes on my right foot, and see if that eased some of the pressure and pain. Once it was healed, and if it was successful, he would do the same on the left (which is more complex and so not a good starting point). If it didn’t help…well…then we might have to consider amputation. As it is, I’m the only one who will consider it. My parents verge on putting their hands over their ears and running away, shouting “lalalalalala! I can’t hear you!”. Purely because they are so scared for me. So I won’t consider it aloud anymore, for their sakes.

He said they would get back to me with a date for the surgery, at which point SpR went out of the room, to reply to a bleep, I thought. A few moments later, he was back: “You’re booked in for 1st December, if that’s okay?”. What NHS waiting lists?!

I listened and watched happily as the consultant took a surgical best practice outline for EB patients from my EB nurse, genuinely grateful for the help. Phone numbers, names and emails were swapped to co-ordinate everything and everyone needed to make the surgery as atraumatic as possible for me. Gratitude swelled inside me, making me feel rather emotional.

Now plans are underway for phase one of Fixing my F*cking Feet!

Come December, it’s all I’ll be blogging about!

Mel xx

Look at my toes – that’s why the ball of my foot is under such pressure, and thus SO painful. The surgeons have only ever see toes curl over before – which the very ends have done. But the 90 degree angle is a medical mystery. Someone call Scooby Doo and Quincy, MD!

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