Category Archives: Catching up

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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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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Filed under Catching up

(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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Filed under Catching up, People Power

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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Filed under Catching up, Disability

Coming Up on Blogeration…

After weeks of feeling like total rubbish, wrestling with Bipolar, spending time in hospital and having unexpected procedures, my blog became somewhat neglected. Apart from a couple of rather whingey posts. I did intend to write a post about all that happened whilst I was in hospital, to update all of my lovely friends and Tweeters (many of whom have become good friends), but I decided we’d all had enough of my infirmary saga. If anyone wants an update, or to ask a question, please just say. Your support, friendship, love, laughter and visiting – Mrs Marsh, you star!) – made everything bearable.

Instead, I, and my opiate muddled brain, will attempt to write about the subjects that have been bugging my whilst I’ve been bug (of the infection kind, not of the many legged variety) and bed ridden.

They include:
The abortion bill debate
The treatment of and attitudes towards foreign workers
ATOS (inc. their sponsoring of the Paralympics)
The continuing disgusting treatment of the ill and disabled
Sexuality and censorship

How quickly these get written will remain to be seen! But work on the first will start as soon as this one is posted.

TTFN

Mel x

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Introductions

Welcome to Blogeration! This is where I intend to write about everything I don’t discuss on Missy Magpie, my first blog. While I love clothes, accessories etc, I have a lot more that interests me, a lot more that I’m passionate about, and a lot more I want to talk about!

I hope you enjoy reading this blog (and you might even enjoy the other!), and I look forward to talking to you all.

See you soon,

Mel

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Filed under Catching up