A Prize for Morpurgo

So my seven year old daughter and I had finished our latest bedtime book and I thought I’d nose around the charity shops during my lunch break to see if I could pick anything up for the next evening.

Lo and behold, I find a brand-new box-set of three Michael Morpurgo books for next to nothing, so I snaffle them up.

We have read one or two Michael Morpurgo books before. He is a very talented writer and as far as I can tell, thoroughly deserves his reputation as a cracking storyteller.

His books are pitched at a slightly older age group than my daughter, but she’s an intelligent girl with a reading age way beyond her years, so these books are ideal for us to tuck up with in the half light, just enough to stretch her vocabulary and imagination… Perfect.

So I scouted each one out, to see which one we might start with.

After flicking through a few pages of “The Amazing Story of Adolphus Tips” I decided that I would set up an award for the misrepresentation of MS and I am afraid to say that Michael Morpurgo has the dubious honour of winning the inaugural gold medal – well done sir.

I don’t know if copyright allows me to directly quote from his books, but I don’t care, I’m going to anyway…

The opening chapter deals with Grandpa’s funeral:

“I tried hard to feel sad, but I couldn’t, and not because I didn’t love Grandpa. I did. But he had been ill with multiple sclerosis for ten years or more, and that was most of my life. So I never felt I’d known him that well”.

“Sometimes it was all he could do to smile. In the end, when he was really bad, Grandma had to do almost everything for him. She even had to interpret what he was trying to say to me because I couldn’t understand any more”.

“…I could see the suffering in his eyes”.

“when I heard he’d died I was sad for Grandma… But in a way I was glad it was finished, for her and for him”.

“You should have known him like I knew him… We used to laugh in the early days – how we used to laugh… he just stopped laughing a long time ago, when he first got ill”.

“I would often hear my father pleading with her to have Grandpa put into a nursing home…”

Well done Mr Morpurgo. I’m really going to have fun reading all this to my daughter.

I have decided that I’m going to read this book anyway, as we are almost guaranteed to enjoy it and our favourite books have always included a roller coaster of emotions (Charlotte’s Web, Black Beauty). Do I censor it, though? Do I drop the “with multiple sclerosis” from the top quote?

…Or should I leave it in and use it as an opportunity to say that MS affects people differently, that severe cases are rare, that it doesn’t directly kill you, that I am not unhappy, that I am not worried, that I will always be there for her, and that this isn’t going to happen to me?

I can’t believe that he hasn’t researched this aspect of the story and you do hear of deaths in the media where MS plays its part, but this is just a torrent of negativity. An absolute worst-case scenario used as a handy off-the-peg disease to slot into the book as a story device.

I think that even if I censor it, it will nag at me (us?) anyway and I will need to have a discussion about these misconceptions, whether it be about MS or any other disease or disability.

RIP Allan Robb

I see the media are reporting that the BBC Radio journalist Allan Robb has died.

Allan had MS. I don’t know what type of MS it was and I don’t know how he died.

I am assuming that the MS was a contributory factor in his death as the media are implying that his death was actually caused by MS, which I have always been told is impossible. “You will die with MS, not of MS” is the mantra bandied around by MS nurses and the like.

Take a look:

  • The Guardian – “…has died aged 49, after suffering from multiple sclerosis.”
  • BBC website – “…has died at the age of 49. He had been suffering from multiple sclerosis.” 
  • All media Scotland – “…has died aged 49. He had been battling multiple sclerosis.”
  • New Statesman – “…dies of multiple sclerosis”

Nice use of the words “suffering” and “battling,” as well, I’m sure you will agree.

This sort of lazy journalism does nothing for the image of people like me (and probably you) with MS.

Either that, or all the health professionals I have met in the last couple of years have been telling me lies.  I’d like to think that an MS specialist has more knowledge of the disease than a journalist, anyway.

Anyway, further to this, I like to test out the UK’s MS charities’ use of social networking. After Allan’s death had been reported, I sent two tweets each on the subject to the MS Trust, the MS Society (UK) and the MS Resource Centre to see if any respond. That was three days ago, so far no replies – watch this space.

Flicking the vees

Happy World MS Day!

Not happy as in “Yay! I’ve got a crappy chronic illness that will progressively get worse as I get older,” but “Yay! Let’s crush this disease, so that me and everyone else with MS can lead normal, full, energetic lives. Lives free from  (delete as appropriate) fatigue, pain, cognitive impairment, dodgy eyesight, pins and needles, dizziness and problems *ahem!* down below etc etc…”

For one day, let’s get MS to look the other way while we run off, flicking the vees at it’s back. Let’s try and forget this thing (because it sometimes feels like a thing and not a disease) exists.

Join the global movement at http://www.worldmsday.org

Compare and contrast

Compare and contrast the Multiple Sclerosis International Federation (MSIF) World MS Day video from 2009 (positive portrayal of MS) with an Australian MS Society advert from 2007 (negative portrayal of MS) and read on…

The first time I saw “Beautiful Day” it brought tears to my eyes (and I absolutely hate U2). I guess because it depicted people with MS so positively. It also touched a nerve (‘scuse the pun), reminding me of that weird other-worldliness I experienced when I was first diagnosed.

Now take a look at this one…

I have seen the Australian “Saboteur” video get good responses on message boards and discussion forums from people with MS, but I think this is largely because people want to vent about how tough their illness is.

This is a natural response, I guess, but this sort of film doesn’t do people with MS any favours for all sorts of reasons, and it must be particularly tough for the newly diagnosed. Yeah, life is tough sometimes and I know I have a moan myself every now and then, but it’s easy for a bunch of people in an advertising agency or (dare I say it) an MS related organisation – people without MS – to decide what we should be feeling and how we should be portrayed.

I will be highlighting other negative and positive portrayals from now on.

With MS week in full swing, it is encouraging to see the UK’s MS Society engage in an advertising campaign that doesn’t depict people with MS as sufferers or victims, but demands fair treatment on our behalf.

RIP John Hicklenton

The graphic artist and subject of the documentary “Here’s Johnny!” John Hicklenton died last month in an assisted suicide, taking his MS with him.

As evidenced by the film, he would anthropomorphise his illness – he likened it to both a terrorist and being in a bad relationship. It was reported that prior to his death he had taken some delight in the fact that his MS also had a week or so to live.

I have reported quite recently that I had a few issues around John Hicklenton. By way of explanation, I was disappointed that the documentary showed him refusing beta interferon on the grounds that he would have nothing to do with medication that had “interfere” in it’s name, preferring to take the path of unproven and sometimes discredited alternative medication. Each to their own and all that, it’s just the reason he gave irked me a bit.

Despite these misgivings, the MS world has lost a strong character who fought for the rights of people like me with MS, for which I can only be eternally grateful.

His death was reported on the Forbidden Planet website.

Experience of fatigue

Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.

I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.

I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:

“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”

“I feel like I’m in a jail cell as I’m so tired all the time…”

“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”

“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)

“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”

Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.

Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.

Further information

MS Explained

Just a note to say that the MS Trust (UK) have updated their marvellous booklet MS Explained.

This is a little bit more involved than some of the literature out there. While not for everyone, it explains the neurology and immunology aspects of MS very well in layman’s terms. I would heartily recommend this publication to the newly diagnosed. In the last year and a bit, I have read up on MS from various sources, gorging on the information within. I am pleased to report that the MS Trust publication had a lot to teach me. I know which parts of the brain have been affected causing my diplopia and nystagmus, for instance.

If it’s a more general leaflet for friends and colleagues you’re after I would recommend the MS Society’s “What is MS?

If you live in the UK, the MS Trust can send you a copy of MS Explained for nothing. You can also download it for free wherever you are (along with numerous other publications), just click on the link below.

As if by magic, a support network appeared

Two items of fantastic news here in North Derbyshire. Firstly, our wonderful MS nurse has teamed up with the local MS Society branch to organise a series of weekly talks/discussions/lectures titled “Getting to grips with MS” for the newly diagnosed. Topics are to include exercise, benefits, developments in treatments, coming to terms with the diagnosis, fatigue management, employment issues amongst others.

A lot of ground that these talks cover, will be stuff that isn’t relevant to me, things I already know or things I think I already know. I think the main benefit for me, will be the chance to meet people in a similar situation, share experiences and feel a little less isolated.

In another new development, my local branch of the MS Society is organising a series of monthly drop-in sessions at a local surgery for people with MS or their partners/carers to have any queries answered, access MS Society literature or simply to network with others over a cuppa.

I don’t normally interact with my local MS Society as the people who attend the social evenings tend (this might be a little unfair) to be in an older age bracket. This is an issue that the MS Society has recognised nationally, judging by the voting slips that were sent round recently. I guess the EMYAMS facebook group is one outlet seeking to redress this.

It would be interesting to see if other areas have similar schemes for reaching out to people, or if there are any innovative ideas out there.

ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee…… er.. [ctrl-alt-del] Damn!.. Didn’t work.

I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease – usual stuff – wheelchairs; appearing to look well etc.

One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.

The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn’t look like it is ever going to be anything other than that indefinitely.

Having MS fatigue is just like that – a sudden brain-crash. Nothing works. I have been jolted ‘awake’ from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all – a completely empty thought process. I just didn’t seem to have the energy to think. While that’s quite a scary thing to realise, it’s even scarier to feel your mind sliding back into that position again only seconds later. It’s like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.

Of course, that’s the mental side of it. Physically, it’s like being in a four-legged race with both legs strapped to sumo wrestlers.

Right – now I’m off on my holidays. Going to do battle with hot weather.