Tag Archives: love

(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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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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(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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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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A Father’s Day toast to my dad

Today is my dad’s 28th Father’s Day. He has two human children, and one four-legged, furry one called Bessie. He says he loves us all equally (!!!), but us humans know who is top dog!

I often think that dads of disabled children are overlooked, as mums are more often than not the primary care givers (to able bodied children, too). My dad often says that he doesn’t do enough for me, but that isn’t true at all. As my consultant once observed, he is one of the special ones, and that’s an understatement!

A while ago, we were discussing the issues of parenting with disabled kids. I said, truthfully, I would much rather have EB and my parents than have neither. My dad said that, though he wishes he hadn’t passed on his EB gene, he would “selfishly” always choose to have me with it than not have me at all. He said that being my dad has made him a better man, and he couldn’t imagine life without me. I’m crying again just writing that!

It has been far from easy at times, our relationship. Mostly because we are so much alike and have been known to lock horns over such trivial things as carpets (yes, you read that right). But we’ve always loved each other, and, now I’m older, we are great friends. Apart from the odd tiff! We go to football matches, the occasional gig, watch films together and quote The Simpsons at each other (“One of you ate cans, one of you ate health food. How you solved crimes, I’ll never know”). We both love cars, and I’ve got into cricket and am beginning to not hate golf, whilst sneaking my favourite bands on to his iPod, turning Dad into a David Ford, Weezer and Muse fan (he’ll never come around to NIN or ATR, sadly), and he saves Johnny Depp et al interviews for me from newspapers. I’ve realised that, though he might not remember the courses I studied at uni, and has at times added or subtracted a year to my age, he knows me far better than I knew. He can read my moods, knows how to calm me down or cheer me up, and he always helps me to rationalise my fears. Dad understands my decisions when no one else does, and can tell I need a cuddle from the way I’m sitting. He drives me here and there so that I can have a social life, drops my friends home so they don’t have to walk or catch the bus, has sat with me while I get tattooed, bought home weird things that he knows I’ll like, and sat outside Brixton Academy until 11pm even though he’ll be up at 5am for work.

Dad is still there when I’m in hospital, and comes to sit with me in Recovery after I have surgery. He doesn’t mind if I vomit blood over him, and protects me when I’m too drowsy or in too much pain to speak. When I have a blistered eye and am screaming in agony, he still lays on my bed with me and cuddles me until the Morphine kicks in. Dad knows when I’m a bipolar bear, and let’s me cry snottily on his shoulder until I have no more tears. He’s even been stuck in two lifts – one directly after the other in Great Ormond Street – with me on the theatre trolley, two panicked nurses and an almost hysterical porter. All he cared about was me being okay (including telling said porter that if he tried to climb on my trolley again – to get out of the celling hatch! – there would be trouble) and getting to my bed as soon as possible. He’s taken me and Mum to Brighton, even though he hates shopping, so that I can have a nice day after having surgery.

Dad has believed in me when I haven’t, slept in chairs on hospital wards and in A&E departments to be there for me and Mum, had more days off of work (even though he is self-employed, won’t get paid and we’ll be short of money) to be with us than I can count. He’s run from the City to Lewisham when I dislocated my knee to get to me when the trains were stopped, driven me home from hospital at 10pm because I was desperate to sleep in my own bed. Dad has chased our guinea pigs around the garden and been scratched to bits, cleaned bird cages and tortoise houses so that we could have pets. And he agreed to having Bess because she made me happy after months of ill-health (I was 21 when we got her!).

Dad has always given me the encouragement to keep my spirit going every day, and walked a mile in the snow and ice to get my medicines to keep my body going. He has driven across London to get my pain killers and sat in pharmacies for hours to wait for them, just so I can sit comfortably.

He is currently renovating an antique desk and chair, so that I can have my dream place to write, overlooking the garden, even though kneeling on the floor damages his skin.

All of these things, and so many more, make my dad the best I could ever ask for. You might not change my dressings, or know how to measure out my medicines, but you’ve loved me all my life. That’s the most important thing of all. I’m incredibly lucky to have my dad in my life, but luckiest of all that my dad is you xx

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My dad feeding a two day old me.

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