BADD08-09 - a snapshot of changes

I know I said recently that I wasn't going to keep blogging about my disability issues on what is, after all, a work blog, but it's Blogging Against Disablism Day and so, in what I promise will be my last blog on this for a while, unless strictly necessary, I want to look back at how things have changed for me since BADD08.

Healthwise, things have changed little. My seizure frequency remains more or less unchanged. I'm still on the same meds, at the same dose, and have a very good trade-off between stability and quality of life. No complaints there, then.

What did change for me was that very shortly after BADD08, my personal life underwent a big change - I became single again. That might not sound like a big deal to most people (setting aside the emotional upheaval a split always brings in its wake) but it has massive implications when you've been used to having someone around to be a carer, pick up the pieces after a crap day, ferry you to medical appointments because you can't drive yourself there, and so on.

I was partnered up when diagnosed more than a decade ago and then, when that relationship ended, moved almost seamlessly into my next relationship (purely by happy accident). For 12 years, there was someone by my side to tuck me up in bed after a seizure, fight my corner with the medical establishment when needed, and basically help me manage my life so I could continue to live as independently as possible.

Moving out to live on my own has reminded me how vulnerable I am, actually. I'm fortunate that the tiny handful of tonic-clonics I've had over the last year have not left me in urgent need of hospital treatment. But if I had, who would have called the paramedics? The last couple of simple partials I had left me very emotional afterwards - weepy and edgy, more so than when I was coupled up.

I've always been fiercely independent and am relishing being single again in many ways, but it's also made me aware that my need for independence mostly overrides my ability to ask for help. I had a tonic-clonic just days ago that took me 3 whole days to recover from. While friends both near and far were quick to text, tweet, ring and email to check on me once they heard, not once did I feel able to ask any of my friends or family who live near to me for assistance, even though for those 3 days I barely ate, could barely drag myself out of bed, was too frightened to attempt a shower as I felt very unsteady on my feet and cried a lot.

From a work point of view, that was also 3 days I didn't earn any money and, when you're single and self-employed, no one's going to pay the bills for you.

Ironically, that seizure was triggered by stress caused by my frustration with my publisher, for whom I've written a book on - epilepsy!

So, for me, the last 12 months have been very much about learning not so much how to live alone but how to cope alone, and making the necessary adjustments to my daily life to keep myself as safe as possible while staying independent. I guess I still need to learn how to ask for help when I need it. Ask me again in 12 months how far I got with achieving that particular hurdle...

Throwing the book

I have a book coming out in a matter of just days and I want to throw the entire print runit at my publisher.

I've been so wrapped up in contract work, and slaving away for long hours to get it all done, that I didn't really pay too much advance attention to the book. I kept thinking - it's a few weeks away, I've plenty of time to start pitching. Then suddenly the weeks whizzed past and this morning it dawned on me that I'd heard nothing from my publisher at all since mid-March.

Where the hell were my dozen author copies? What had they lined up for promotion? (Back in mid-March, I'd filled in a massive form detailing stuff about various press contacts, local bookshops, names of editors at local radio and TV stations etc, precisely to assist them with that.)

I was just about to pick up the phone when an email arrived from the bunny at the publisher. The bunny's job is to get publicity for the books they publish. So, 4 days before publication she decides to let me know she's hastily cobbling some promo slots together for me.

To say I was enraged was an understatement. My anger was not helped by the fact that I've been severely sleep-deprived for a couple of months, which has made me very grouchy indeed most of the time. I asked her where my books were.

- We posted them to you at the end of March, she said.

- I haven't received them, I replied.

I'm not going to recount the entire string of mails that went back and forth but it transpired that the books had been sent to my old address, which I left 4 months ago and is 40 miles away. This despite the fact that I mailed the bunny in January to give her my new contact details, and again in mid-March to remind her of my new address. So she had all this on file and still managed to send my books to my old house. Worse, she insisted I must have them as they'd been signed for. I pointed out, rather tartly, that I'd not been back to my old town since I left and that I'd paid Royal Mail a large sum to forward all my mail for a year so I still should have received them (and yes I'm going to stick a rocket under Royal Mail tomorrow - watch me light the blue touch paper and stand well clear). But the bunny could have sent them to my current address in the first place if she'd paid a bit more attention. And if she'd bothered to email me a month ago to say the books were en route, the problem would have come to light very quickly.

But I'm more hacked off with the fact that I spent several months working on the book for an unbelievably paltry advance (and basically earned only about £50 in January from other clients because of time taken to finish the manuscript), in the hope that it would sell reasonably well and I'd at least earn some royalties.

But no, it's all been left to the last minute and I ended up bleating my woes on Twitter - some colleagues rallied around with ideas and contacts, for which I'm very grateful (even though I was horribly grumpy at the time), and I've now managed to secure a slot on the local BBC radio morning magazine show. It's something at least. Fortunately, there's an "awareness week" coming up mid-month, so I may yet be able to pitch a feature or two around that, much as I hate awareness weeks.

I am so knackered that I've had to apologise to lots of colleagues today for being a foul-tempered cow lately. And I had to grovel to the parental for going off-radar for several weeks, as well. I'm not massively popular right now. On days like these, I feel like jacking it all in and stacking shelves at the supermarket instead.

Lesson learned, though. I shan't write for this publisher again. Although I shall, of course, milk the fact I have a book out because it's good for the old CV.

Do I wish I'd never signed the contract? Hell, yes. At least right now. But I hope I might still be able to salvage something out of the current mess. The Manchester media community have been the best, today, with their offers of support. The next round will definitely be on me.

Some perspective

Edwyn Collins is an inspiration, and that's official.

I saw him on stage years ago in Scotland, playing with the as-yet unsigned Orange Juice. I've almost certainly got some of his early singles stashed away somewhere. And I remember when news broke of his brain haemorrhage a few years ago, followed by a second one.

He's spent the last four years learning how to speak again and how to walk again, he's lost the use of his right arm and hand but has taught himself to draw and paint with his left hand instead. And he's started gigging again.

There's a great blog on the BBC website about his struggle to pick up his life again since 2005. It certainly puts my own health issues into perspective and I feel slightly ashamed that I've whinged a bit here and elsewhere over the last few days. I'm truly grateful that I can work fulltime, apart from the occasional bad day. I really am going to try and remind myself that however difficult things get, others, like Edwyn, are dealing with much greater difficulties.

Ok, I'll shut up now.

A lost day, or not fit to work

I skived off from work for a couple of days last week.

Thursday I just wasn't in the mood for work, so I pottered around the house instead and surfed the net, and just generally lazed. I did use some of the time productively, to berate my utilities company for not changing my meters - the previous tenants were on prepayment card meters, no use to me as I have epilepsy, and if I have a seizure then the credit runs out, I'll be cut off for hours before I'm well enough to go to the shop to buy a top-up for the gas or leccy. If the gas goes, I'll have no heating or hot water. If the electricity runs out, it's even worse, as the boiler needs electricity to power it, so I'd be left without heating, hot water and power. I've asked the utility company 8 times this year to change the meters, and told them 4 times I have a disability. Each time, I was told that as I'm disabled, special provision could be made. Unfortunately, the utility company still didn't bother to record my request for a meter change, or the fact that I'm disabled. My berating did produce a result - a date for the meter change - so I felt a bit better about skiving.

On Friday, I caught up with an email backlog, then lunched with a bunch of digerati colleagues and friends in town. A quick dash home for 2 hours to sift through more mail and the news, then I was off again to an NUJ meeting and I didn't get home till late.

So on Sunday, I settled at the PC with the aim of catching up on some of the work backlog. I managed to get several hours of solid copy-editing work done and was nearly at the end when I suddenly "weirded out". This is how I describe having a simple partial seizure. Not everyone's simple partial is the same. Mine generally involve feeling weird (and I really can't get more specific than that), with a horrible rushing sensation. I did what I always do - lie on the floor.

I do this for 2 reasons. 1) it's better than being at the desk in case it turns into a full-blown seizure and I come round to find QWERTYUIOP imprinted backwards on my forehead. Admittedly, this would be very rare for me, but why take the risk? 2) I usually throw up after a seizure and I definitely do not want to puke on my keyboard. Have you ever tried to clean vomit off one of the most complex components of a PC?

The SP lasted about 90 seconds. So far it's cost me 24 hours of my life.

I stayed on the floor for a good 10 minutes after the weirdness subsided. Then I tentatively got up and sat back at the computer. I abandoned work as my brain was too scrambled, but pottered on Twitter while waiting to see if I might still throw up, as I felt horribly nauseous. In the end, I wasn't sick, but I ate nothing for supper and I was so tired I went to bed at 9pm.

I managed 9 hours' sleep, but it was a restless 9 hours, with plenty of wakings, flinging the duvet off and on, and struggling to get comfortable. So I awoke this morning feeling a bit groggy.

- never mind, I thought, I'll be fine once I've had a cuppa and woken up a bit.

Ha ha! I spoke too soon. I felt even more exhausted as the day unfolded. Vague plans for a nap had to be abandoned as my desk editor sent back urgent chapter amends for the book I'm working on.

90 seconds - the only difference between a simple partial and a tonic-clonic seizure is that the former doesn't usually give you a post-ictal headache. But you still lose a whole day of your life recovering...

Another early night beckons.

Media Diet Week 41

Press: the turmoil on the financial markets around the world this week has meant the papers have been out of date even before they rolled off the presses. Fortunately, papers these days are online too and the best ones update hourly or even faster. Print editions are best left for in-depth background features as the headlines change so rapidly. I've been glued to the Guardian this week for financial updates and also Robert Peston's blog on the BBC website, which to my mind has the most incisive analysis and most interesting forecasts. The best other material I've read this week is the Guardian's G2 special today on deafness. It's great to see disability being covered intelligently and with some humour too. More please.

Blogs: there seems to have been a theme this week out there in cyberspace - word lists. First, I stumbled over Difficult Words, which was a fairly comprehensive list of words that are often confused with others (hat-tip to Juliet). I also rather enjoyed BBC Magazine's wordy musings this week - the bizarre story of the dictionary reader, Ammon Shea, who is a tad obsessed with the vast vocabulary of the English language. Following on from that, the Magazine published our 50 favourite words, some of which are splendidly silly. And there's also the Magazine's very handy list of financial jargon, which is pretty useful right now. When editing financial stuff (daily in my case), these are largely familiar to me but I've yet to see my clients using "dead cat bounce". Still, at least I'll know what it means if it does crop up.

TV/radio: a thin week as I was out a lot and, as usual, resorted to BBC iPlayer to stay up to speed with EastEnders and The Archers. I managed to catch all of Place of Execution, which finished this week, a fairly faithful adaptation of Val McDermid's brilliant crime novel. The only other telly of note was Never Mind the Buzzcocks, which I used to watch religiously when Mark Lamarr was in the driving seat. I lost interest when they tinkered with the format (now back to how it was) and I never quite took to Simon Amstell. But Buzzcocks was essential viewing on Thursday as Stephen Fry was guest captain oppposite Phill Jupitus. Needless to say, Fry was his usual brilliant self, but I don't doubt viewing figures were pushed higher after Fry made an appearance on Twitter the same day. Within hours he'd amassed a following of thousands and I was overjoyed when he started following me in return. Whodathunkit?

Books: busy week, so still only a third through The Arsenic Labyrinth. How did I run out of time to read books? Twenty years ago, on a career break to do my degree, I thought nothing of reading 7 or 8 books a week and I went out almost every night back then. These days it seems to take a month to get through just one.

Disability and PR spin

I just received an email from Leonard Cheshire Disability. Or rather, their PR company: "I’m contacting you from the information you supplied on your blog. I saw you have posted about disability and I wanted to tell you about an organization in the UK you may or may not be aware of. Leonard Cheshire Disability have just unveiled six new characters (attached) from its [REMOVED] series on [REMOVED] ahead of a six week campaign to change attitudes to disability. Disabled people have the same desires and aspirations as non-disabled people, in work, education and relationships. The new animations will challenge people’s low expectations about what disabled people can do and will be broadcasted on national television over the summer. The new characters are based on the unscripted voices of real young disabled people talking about the issues that affect their lives. One animation highlights attitudes towards wheelchairs and people with a hearing impairment, while the others focus on things like sex, relationships and bullying. From reading your blog we hope you may believe in the campaign and post to your readers and debate about what it aims to achieve. Clips of the new adverts and the TV adverts from the first series can be found and be embedded from [REMOVED]. The new advert clips will include the new characters mentioned earlier, which you can see at the [REMOVED] website; along with more about the campaign, interviews with the voices behind the characters, and clips of all the current and previous adverts: [REMOVED]"

Don't get me wrong, I have nothing against Leonard Cheshire and the valuable work it does for those far more seriously disabled than myself. What I object to is their PR company cynically trying to cash in on this blog to promote the cause. Their opening lines show clearly they haven't even followed this blog properly or they would be well aware that I post regularly, if intermittently, on living with a disability and would not have sent me such a patronising plea ("I saw you have posted about disability and I wanted to tell you about an organization in the UK you may or may not be aware of").

I'm a journalist and I write about disability issues sometimes, with that added insight I have from actually being disabled (at least from an official viewpoint, as my disability is not that bad from a personal perspective). Do they honestly think as a meeja professional I would not have heard of Leonard Cheshire? More importantly, do they believe I am that gullible, buyable even, that an email would be all it takes to promote them?

I don't doubt that Nile-On (the PR company) is doing its best to promote a very worthy cause (and gawd knows, disability needs positive press coverage) but cynically trying to exploit or hijack personal blogs is not the way forward. I get very riled by these kind of approaches. It's not the first time and undoubtedly won't be the last, but boy does it raise my hackles...

I'm far more interested in Britain's Missing Top Model as a way of showing the diversity of disability.

Fit to work*

According to all kinds of official measurements, I'm disabled. I have had epilepsy since 1996 (officially diagnosed in 1997 after a battery of EEG tests). My epilepsy entitles me to a Disabled Railcard, a concessionary bus pass, free prescriptions, Disability Living Allowance and various other things.

And yet I don't feel disabled. I have roughly 2 seizures a year, which is not a lot, although they are full-blown ones and 2 minutes thrashing around on the floor can effectively take 24 hours out of my life as I recover. The problem is I never know when one will strike as I don't get "warnings", which means that technically I'm at risk every minute of the day - I could drown in the shower, collapse while crossing a road or die from SUDEP. So far I've been lucky - almost all my seizures have taken place within the home and I have rarely injured myself. I do take care to reduce risks, especially when out and about, but I don't wrap myself in cotton wool. I just get on with life. If I have a seizure, so be it.

I'm relieved developing epilepsy has not affected my ability to work, apart from the occasional speech problems due to loss of vocabulary (the part of my brain where my seizures start controls this skill), which is a pain in my line of work. It's caused the odd hiccup when interviewing people on making phone calls. Otherwise, it's business as usual. Freelancing gives me extra freedom because of the epilepsy - I don't have a stressful commute, I can rearrange things if a seizure strikes and I don't have to plead for time off for medical check-ups. Having control over how I work matters because I'd be lost without work. I've always worked and been independent - not being able to work would mean a major reassessment of who I am.

Who I am is still me, plus epilepsy. I don't hide my condition and I don't get offended overly much if people make jokes about fits (although people being PC and saying "thought shower" instead of "brainstorm" does offend me). I don't care about being judged either.

Where do I fit in on the great scale of disability? Somewhere fairly insignificant, I expect. I suspect that because I don't see myself as disabled, others don't either. My disability is not obvious, I'm not a wheelchair-user. Occasionally I get asked why I have a concessionary bus pass because I don't "look" disabled. Er, it's because I'm not allowed to drive, that's why. In fact, the biggest hassle is people finding out I'm not allowed to drive and assuming I must have been nicked for drink-driving. So now I'm in the habit of tacking "for medical reasons" on to the end of that particular sentence.

Interestingly, over the last couple of years I have been stunned to discover just how many of my freelance colleagues working in journalism and editing also have disabilities. Freelancing is clearly an attractive option when you have health and mobility issues to take into account.


* This is a "Blogging Against Disablism Day 2008" post. Read more here.

Media Diet week 10

Running a bit late this week...

Press: so my piece finally appeared in a Sunday red-top. They used the most unflattering shot for my byline pic, in a bid to make me look miserable (to match the subject matter) and not only rewrote vast chunks of my copy but even changed some facts and invented things I felt or thought. What actually appeared was wildly inaccurate both factually and also in terms of my feelings. Lesson learned. I won't be selling my soul to the tabloids again - the money is good but I feel soiled.

Blogs: a while back I discovered Benefit Scrounging Scum and what a fine blog it is. If you want to know about the day-to-day reality of living with a disability, look no further. It makes having the occasional epileptic seizure look like a day in the park.

TV/radio: Torchwood was rubbish last week. It made no sense, I felt no desire to know what happened next and I was bored. I had a mini splurge on DVDs yesterday as the TV is so poor at the moment - I watched Control this afternoon. Fantastic. Only one gripe - of all the seizures portrayed, only the last was vaguely realistic. The one of him having a fit on stage showed him having a lucid conversation about 3 minutes after he was carried off stage. Tut. It just doesn't work like that.

Books: needless to say, I raced through Anything Goes. Fabulous, dahling. Laughed out loud every other page and finished it in just under 2 days. Which these days is very fast for me. I'm about 90 pages in to Water Like a Stone and getting twitchy. It took 70 pages before anything of note happened. Far too much faffing around scene-setting, far too many unjoined-up-yet characters and not enough bodies... Val McDermid is far better.

4.0 on the Richter scale with a 6.0 aftershock

Not 24 hours after the earthquake shook the UK (but not here - we slept through it), my brain decided to have its own cataclysm. As seizures go, it wasn't too bad. I've had worse. I think - but I'm not entirely sure - that I was in bed at the time. I just don't know as my memory of everything between 9.05pm on Wednesday evening and 6.00am on Thursday morning is wiped.

Regular readers will know I have epilepsy. I've always been upfront about it, my attitude being if you can't handle it that's your problem, not mine. Officially, I'm disabled, although I don't feel so. I lead a fairly normal life. The tag "disabled" becomes useful at times, as I'm entitled to certain benefits that help me manage my condition.

Today, however, I was twice made to feel uncomfortable about my seizures, for perhaps the first time ever. Yesterday, when I woke up feeling like I'd been flattened by a Scorpion Mark 3 tank then run over backwards by a JCB after being whacked on the head by a sledgehammer, it soon became clear I was not going to be able to work. So at 8am I rang my corporate client and explained that I wouldn't be able to do an interview planned for 9am. Then I crawled back to bed and slept for a good 6 hours.

Surfacing mid-afternoon, I chatted to my client and naturally she was curious about my epilepsy. It was only after I'd chatted quite freely about it and we'd moved on to rescheduling the interview that I learned that she was, in fact, on speakerphone and her director had heard everything.

I could have shrugged that off, except that on phoning the interviewee at 9am this morning, I was somewhat disturbed when he said:
- I hear you had an incident yesterday.
- I was taken unwell, I replied, and unable to work yesterday. Inside I was seething that my client had passed on personal information that was of no professional interest whatsoever, and in fact was not theirs to pass on. And there was something about the word "incident" and the accompanying tone that really upset me because I felt for the first time I was being judged for something beyond my control.

Epilepsy doesn't affect how I do my job, except maybe 2 days a year that I'm indisposed in the aftermath of a seizure. Plenty of wage slaves take far more sickies than I do for colds.

My day was not going to get better, though. At the bank later in the morning, my business banking manager had the temerity to ask me:
- how long have you suffered from that, then?
- I don't suffer from it, I replied through gritted teeth. (Only when you make patronising assumptions.)

I took revenge when he tried to flog me a pension I don't want, by telling him there was not much point in buying it when I might drop dead from SUDEP tomorrow.. the flush on his face was priceless.