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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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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Love Labour’s Lost

When it came to voting in an election for the very first time, I knew, without a shadow of a doubt, I would vote for Labour. Working class born and bred, nerdy Politics student who knew a Green vote would be wasted in our First Past the Post system, couldn’t bear the Tories, and saw the Lib Dems as an ‘also ran’. Yep, my X was definitely going in Labour’s box.

Much to my joy, Labour won the first election I voted in. I didn’t agree with all of their policies, or even like Blair all that much, but they represented my ideals and my background far more than any of the other parties. So I was happy; my little, wonky X had helped them to victory.

Fast forward to last year’s election. I’d spent all day at the hospital, but it was a close run campaign, and I was determined to vote. Dad had to wheel my chair right up to the booth, but I hauled myself up, read the papers repeatedly for the sake of my easily confused tired out brain, and then made another wonky X for Labour.

When the Tories made a coalition with the Lib Dems, I was achingly disappointed; the idea of spending at least four years under their supposedly joint government was almost painful. I knew all too well how the Conservatives treated the working class and those in need, like me, and it was plain to see, right from the start that Nick Clegg and co. just filled the benches. They soon came to be known as the ConDems, and along with my ill and disabled friends, I quickly realised just how apt that moniker was.

It wasn’t long before the ConDems started targeting the sections of society that they perceived to be the easiest: people with disabilities and illnesses, their carers, the elderly, and those who are vulnerable. Cuts in services provided by councils were happening at an alarming rate, the cost of services for those who need them rose dramatically, carers were being put under even greater strain. And then the vicious, painful rhetoric started.

Disabled and ill people have long been treated with contempt and even cruelty, particularly those with invisible illnesses or mental disabilities, but now the government seemed to be encouraging it, fanning the fire of distrust with words, and turning it into hatred.

Making those of us with disabilities and illnesses synonymous with ‘scroungers’, ‘benefit cheats’, the work shy and irresponsible lay-about, draining society with our greed and idleness actively increased disablist content in the media and actions in society: people have been verbally abused, vile notes have been left on cars where Blue Badges are displayed, carers have been spat at, and even worse.

As this situation worsened, Labour supporters like myself were certain Ed Miliband would speak out, defend us, and make clear the distinction between those of us who cannot work – however desperately we want to – and those who won’t work and have no desire to. We hoped that he would support us, and tell the world how we loathe those people who are making careers by faking the pain, trauma and misery we often live with, through no choice of our own.

But Mr Miliband stayed silent, ignoring our plight, and eschewing any hint of Socialism Labour had left – society sharing what it has to ensure everyone is supported.
Then the unthinkable happened; Ed Miliband began to use the same kind of language as the opposition. Truly, I could’ve cried. I, and many others, had been waiting for Labour to oppose what their opponents were saying: to show the discrepancy between the percentage of benefit fraud rates and the percentage of the government cuts; to state that the ATOS tests are ridiculous and give false results, as a man declared “fit for work” died just two weeks later, of the illness he was deemed to be exaggerating; to support carers and explain the millions they are saving the country by not leaving their loved ones to be looked after in care homes or hospitals; to tell the country that we are not scroungers, and that every single healthy person is just an illness or injury away from being in our position.

When Ed Miliband announced Q&A sessions on Twitter, many of us hoped they would be the way to engage him, to garner his support, or just get a 140 character statement that we’re being treated unjustly. Disability campaigners, individuals and on behalf of groups, sent tweet after tweet, hoping one would be seen, as did our Twitter friends with physical or mental health problems. Amongst untold tweets from our “community”, only one garnered a response, which could have come from any ConDem – all tiers of society have to be responsible, from the bottom to the top. The implication that we are at the bottom cut like a surgical scalpel.

Throughout each Q&A, we waited for more responses, thinking that surely we would be acknowledged? But no, favourite muffin flavours and other trivial nonsense was more important than Labour supporters who were desperate for his help.

When I think of the next election, I feel completely lost. The ConDems are marching ever closer to being my worst political nightmare come true, but for the first time ever, I truly do not know if I can bring myself to vote Labour. The party I’ve always supported has no support for me, or my friends. Ed Miliband spends his time parroting whatever David Cameron has said the day before, leaving voters like me to be spat at, to be deprived of our basic daily needs of food, cleanliness, human contact, and to be so fearful for our futures that some become suicidal, or actually take their lives.

I’ve always been adamant that those who have the vote should use it. Especially women, for whom the Suffragettes fought so hard for, and when women around the world are still be kept away from the voting booth, like an underclass.

Now we, who have disabilities and illnesses, are becoming an underclass, and so our ability to vote is a treasure.

But who on earth do we vote for? Labour, Conservatives and Lib Dems have all merged together, creating a three-party system that strikes fear into anyone who cannot care for themselves or needs support. A vote for any other party is a wasted one. So do I not vote at all?

When I stand, wobbling, in the booth at the next election, I have no idea where my wonky X will go. Or if it will go anywhere at all.

Thanks to you, Mr Miliband, I’m another love Labour’s lost.

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On board the Crazy Train

Before I write update you all, I want and need to say a huge, heartfelt thank you to every one of you who has given me support, shown love, shared kind words, sent me marvellous messages, and helped to keep me going. It has meant a great deal to me, and has helped me to raise a smile on the darkest of days. I’m lucky that anyone gives their time to my ramblings, but that you do, that’s more luck than I deserve.

Enough soppiness? Okay, I’ll fill you all in.

On Tuesday morning I felt very anxious; I wanted to go back to the GP because I wanted more help, but I was terrified I would be disbelieved or, at the other end of the spectrum, be told I would have to be admitted to a psychiatric unit.

When I was called by the doctor, I asked Mum to come in with me, and she followed on behind me, stopping only to hand my repeat prescription. As the door between waiting room and doctors’ rooms slipped shut, and my GP lead me on, the idea of being taken away to a secure unit flashed in my head, making my stomach lurch. Mere moments later, Mum was beside me, and I reminded myself not to overreact – that scenario was wildly unlikely!

Super Mum was silent, but prepared with tissue in hand for almost certain boo-hooing. The GP asked why I was there, and I told her all that had happened recently. I said that the fluoxetine had helped me, but for the past few months, I felt that I had been slipping backwards – crying, mood swings, manic phases. I said that I no longer needed an upper, I needed something to make me stable, and that through research and the testimony of a very reliable friend, I had come to believe Lithium was the best of the mood stabilising drugs.

I had been teary, and needed to take deep breaths, but the deluge of tears Mum and I had both expected stayed away.

GP said what I had been expecting – my psychological needs were now outside of her range of experience and real understanding. I silently steeled myself for “admission to a psychiatric unit”, but, like the tears, it didn’t come. Phew!

She said she would refer me to the Community Mental Health Clinic, which isn’t far away at all. Doctor looked at doubling my dose of Fluoxetine while I waited for my appointment, but decided not to as Floxy + Gabapentin can = seizures. And I could do without that right now.

Doctor said she will tell them that my case is somewhat unusual with EB etc. I think she thinks EB is the main cause of my Bipolar, and I really don’t think it is. But maybe I’ll make discoveries with the psychiatrist at the clinic (who will, I believe, prescribe the best meds for me after a meeting or two). It will also very likely speed up my referral (GP said about two weeks, when I’m told eight is the average for “urgent” cases). Maybe people will think I’m abusing EB to jump the queue, but I don’t really care. Like EB, my BD affects my parents massively, especially my mum, whom I adore.

The sooner I’m not making her cry, or taking up hours of her time as she tries to talk her sobbing wreck of a daughter round, or trying to keep up with my manic projects so that I don’t hurt myself, the better our whole families lives will be.

I’m past being shy of having Bipolar, I’m past being shy that I need medication to get my life back. Because I’m not shy to say I can’t help having BP anymore than I can help having EB, and I Camt so anything about one, I can actively fight the other.

I’m not just fighting for me, I’m fighting for my family and my friends, who have supported and loved me all the way. I’m pulling my gloves on and walking into the ring…

Round One is about to start….

Mel xxx

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