Category Archives: Disability

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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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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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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Ms Jekyll-Hyde, at your service

Tonight (technically it was yesterday, but I haven’t been to bed yet. That’s my rule) two of my best friends came to spend the evening with me. We made the most of me having the house to myself (my parents and sister were out at a wedding reception, which I didn’t feel up to attending) and had a girly evening. They also, without being asked, helped me do the things my mum would help me with (acting as my hands, getting me things I wanted to save my ever painful feet). True, wonderful friends.

We had a good old chat, catching up with each other’s news: laughing, worrying, teasing, comforting, reassuring, innocent gossiping and being scandalised. For any male readers, they are the markers of a proper night of Girls’ Talk. They then helped me clear out my wardrobe – helping me decide what to send to the charity shop, taking some bits for themselves (which they’ll purchase by donating a few pounds to DEBRA), and clambering in to the wardrobe to pull items out, saving my hands and feet, and saving my full-time carer mum a job, as someone had to help me!

During our chat, the girls asked me a very pertinent question: “we know your skin is in a state, but how are you mentally and emotionally?”

Pertinent because, about an hour before they arrived, my mum suggested that we make an appointment as soon as we can, so that I can ask my GP for better treatment for my Bipolar Disorder.

Before I was started on Fluoxetine (Prozac), the idea of suicide was a permanent resident in my mind. Starting on the medication eventually shooed it away, and I felt more stable. My mood swings became far less frequent, and I developed the ability to know when a manic or depressive phase was starting. I’d tell my parents, and I would either do things to make use of my manic time – I get a lot of boring admin done during those times, as the Fluoxetine make them manageable. If it was a depressive time, I was able to talk more openly to my parents, who had endured me sobbing but still insisting “I’m fine, it’s nothing, honest, I’m just being stupid”. Now I could tell them “I can feel it coming on. I need a cuddle and to talk/I’m going up to my room, I need to be alone”. But if I wanted to talk, I would be honest; after my fundraising event, the euphoria of it being a success was huge…then the depression hit. I could tell my mum and dad that it was the come down – what did I have in my life now? What could I do next? It had proved I was too ill to work, which ruined my dreams.

I am incredibly lucky to be twenty-five and still have such dedicated, loving parents. As the Black Dog put its paws around me and growled despair into my ears, my parents would wrap their arms around me, letting me drench them with tears and snot as they pull me into cuddles designed to squeeze the hurt out of my soul.

Unfortunately, as my regular readers know, Fluoxetine hasn’t been working so well recently, with my suicidal tendencies making a reappearance. As my body let me down and drained every bit of energy and fight I had, the Black Dog broke out of its cage, and has been holding me by the jugular ever since.

Some days it lets me make a good show of being truly happy, but it’s always there, hackles up, telling me that I’m worthless, a drain on my parents, a failure, repellent, an oxygen thief, generally wholly unworthy of living.

The days of pretending are getting few and further between. Most days see me burst into tears, or wracking sobs that make my chest ache. Yesterday (Friday) was a emotionally painful day, made worse by the fact that I couldn’t vent my fury without sobbing. In a bizarre way, the tears seemed to help my case and amplify my rage, but I was angry to have uncontrollably cried in front of a crowd of people. I felt so stupid, so childish and embarrassed.

Today, a relative made thoughtless, unfair and hurtful comment. I was barely able to respond, knowing what would happen if I dared to speak too much. Of course, the tears came anyway, and what I would usually have a good old swear about, because it pissed me off, became a knife to my heart. I cried to my mum about it again just now – a good eight hours later.

I don’t want to live like this. I can’t kill myself without help, which no one will give me. I need to live my life, in which I’m me. I need to be a good daughter, not one who makes her parents feel guilty for conceiving her.

So, off to the GP we will go (my mum will come in with me only if I want her to. I’m certain I will). I will ask for something better – hopefully Lithium, which has it downsides but is apparently the first class Bipolar Treatment.

The Black Dog will be rehabilitated, retrained, rehomed.

And I can be me again. Flawed, imperfect, but not as much as I am now.

Wish me luck 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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