Tag Archives: EB

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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(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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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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(What’s the story?) Morning Gory

Last night I was in agony with my foot, to the extent that I genuinely didn’t know what to do with myself. It was happening within a depressive phase of my life with Bipolar, which made it all the worse. You can catch up with it by reading my last post.

Well, I took extra sleeping meds (within the dosage I’m allowed), to enable me to sleep through the pain. So tired I couldn’t sit up straight, me and the Black Dog curled up in bed, and fell in to the deepest sleep I’ve ever had.

I woke up this morning, hearing Bess (my darling little dog) having her fur cut. Honestly, you’d think a wolverine was being tortured, not a a little terrier having her tummy trimmed whilst being cuddled and kissed! I laid in bed, opiate lozenge in my mouth, and waited for Mum to come and help me up. I felt wide awake, and decided to sit on the landing floor to cuddle the now cashmere soft Bess.

All was fine – I was smooched on the nose, and I held her in my lap – then I tried to get up. Because I felt awake, I forgot that the sleeping meds (of which I’d had more than I usually do) are also muscle relaxants. I’d put my wobbling down to the state of my feet, but oh how wrong I was.

I turned to kneel and push myself up…one arm gave out from under me, I grabbed the chair in front of me – forgetting in my panic that it’s a swivel chair – it spun around, my legs collapsed, I unintentionally flipped over and ended up with my head hanging over the top stair.

Poor Mum was stricken. Luckily, as it was ending, Dad came back in from the shops and ran up to help. I sat up, knowing instantly that I’d badly hurt my left elbow, which is already constantly painful, and my left knee, which is my best behaved one.

I was quick to reassure Mum that I was fine – explaining what had happened with the bloody chair and my rubber limbs! There were a few tears as the shock hit me, but then Bess appeared.

She has no understanding of EB. To her, I’m just one of the pack; I give her treats, I play with her when I can, and I give extraordinarily good tummy tickles. She knows when I’m sad, and she’ll stand on my lap, with her paws around my shoulders to cuddle me. Her big liquorice nose snuffling in my ear, her soft whiskers on my cheek.

But as I sat, booing on the floor, she rolled her most treasured possession under my leg…a soggy, grubby, chewed up tennis ball. She wanted me, or Mum, or Dad, to play. And that stopped the tears, because I had to laugh. In the midst of packing for hospital and panicking over what I’d just done, there was a little furry ray of sunshine at our feet. Bessie’s tennis ball is her ecstasy, and she wanted me to have it too.

She was jet black as a pup, but now her Yorkie daddy’s genes have come through, and she’s mostly silvery grey (with a ginger ‘tache!). My little, scruffy Grey Dog chased away the big Black Dog today. He’ll sneak back, but Bess will be there, shining with love and silliness, and she’ll see him off again.

Yesterday, I felt lucky, but I wanted to give my parents their freedom. Today I feel that, once again, something saved me. Something kept me here. Being agnostic, I won’t rule anything out. But I feel that if I keep being saved, there must be something I’m meant to do. I just need to find out what it is.

So until the Black Dog comes crawling back, I’ll have a good think about what I’m here for. Playing with Bess is definitely one of my purposes 🙂

M xxx

My Bessie Bear, chilling in my room, with the tennis ball!

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Soul on my skin

“Our tattoos are us wearing our souls on the outside”. So said a Maori chief at the Wellcome Collection’s ‘Skin’ exhibition last year. I was there because I had been immortalised in an etched portrait by the wonderful artist Gemma Anderson, in a piece we entitled ‘Against Nature’.

As the chief said this, my dad leant forward and said “like yours are for you”.

And it was true. Despite the fact that my desire for tattoos was a source of conflict between me and my parents for some years, they now understand why I not just wanted, but needed, to have them.

I have scars of all different types and shapes and shades across my body, caused directly by EB or by the treatments and surgery it has lead me to undertake. Some are hidden by my dressings and clothes, so are completely visible, not least on my hands, neck and on my left eye. I don’t hate them, they are what they are. Battle scars, I suppose, from a war with my own body.

For me, tattoos represented a chance for me to have “scars”, permanent marks on my body that I had chosen to have there. The marks I already have are a testament to the weakness of my skin, the defects in my genes and collagen. They show what is outside of me. Tattoos would reflect my strength, physically and spiritually, and the beliefs and ideas that have given me the positive energy to keep going. That sounds incredibly cheesy, I know. But it’s true, nonetheless.

So my parents escorted me to the tattoo studio, where the artist, Pete, and I made an accord in three parts: 1 – one of my parents had to be with me, as the tattoo would be on my back and he needed someone with experience to watch for impending damage. 2 – If damage occurred, I wouldn’t protest at him stopping immediately. 3 – If it didn’t work, I wouldn’t go elsewhere and try again.

Tattoo 1 – Two small stars on the left side of my lower back. Though the sound of the machine initially made me want to do a runner, the adrenaline rush of having the needle buzz against my skin was immense. To anyone but other than me, those stars are completely unremarkable, but to me, they mean so much – mastering my fear of pain, proving that I know my body better than anyone else, vindication for standing by my beliefs, and a step toward having some control over what my body looks like. Not only was there no damage to my skin, the tattoo healed better than on someone without EB. No weeping or scabbing, it looked as if it had been drawn on in pen. No one has any idea why, but my back has always behaved differently to the everywhere else on my body.

Though I didn’t, as my mum feared, contract blood poisoning, but I did catch the Tattoo Bug. The two minute experience of the stars wasn’t enough – I wanted more.

Tattoo 2 – “I believe that whatever doesn’t kill you, simply makes you…stranger”. Yes, it’s a quote from The Dark Knight, uttered by The Joker. It speaks to me because the more I experience with EB, the more warped my sense of humour becomes. The quote and the speaker fitted perfectly, and it’s a reminder to me to only let darkness into my comedy, not my heart or soul.

Tattoo 3 – “Now I know that freedom must be taken, and fate stolen ~ Anno”. This comes from an untitled poem by Anno Birkin, someone I will write more about, as he deserves a post all of his own. It’s part of a longer excerpt, the rest of which I have on a pendant. I had this tattoo after a long spell in hospital, losing a friend, and having another battling cancer. I was realising, more than ever, that life is short and you have to reach out and grab what you want from it. Nothing worth having is easy to get. I haven’t achieved as much I’d like, but carrying this on me, always, reminds me to never stop trying.

Tattoo 4 – “Bettina. Some Fantastic Place”. Betti is the above mentioned friend, who battled cancer. She passed away in December 2009, and I’ve never known grief like it. I knew that, wherever she was, Betti would be telling me to stop crying and carrying on and enjoy life. ‘Some Fantastic Place’ is a song by one of my favourite bands, Squeeze, and as it was written about their friend who was taken by leukaemia, it seemed to call to me. Bettina was the bravest person I’ve ever known, and I feel honoured to have had her in my life, and to still have her in my heart. Betti having her tattoos gave me the courage to have mine, and that felt like the best memorial I could give my amazing friend. It’s completed with a little butterfly, flitting away from the words. Not to symbolise EB, but to show the free spirit that Bettina was, is and forever will be.

My next tattoo is imminent, and no doubt I’ll write about that, too. My tattoos have given me things to love about my body, marks I can look at with pride and happiness. One the rare occasions I disrobe in front of people now, no one comments on my EB scars, instead asking about or admiring my ink. They give me the freedom to be me, and I’m eternally grateful to Pete for being brave enough to take the needle to me in the first place.

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