Robert was diagnosed with MS a few years ago and all proceeds go to the MS Society.

Find out how you can buy a copy on the Ash website and have a gander at the video below.

“my body is at war / a war I cannot win / but I’m the happiest / that I’ve ever been”

The price includes accomodation for two nights in scandinavian style cabins, meals, and participation in any of the outdoor pursuits including an aromatherapy pool, archery, orienteering and high wires. It seems quite good value at £100 per person, so I have booked in with my family just to see what it’s like.

I expect it will be a bit strange to be on “holiday” with a whole lot of other people with MS.

The Calvert Trust provide holidays and respite care for disabled people and their carers, so I fully intend to write a review of the experience. Albeit from the point of view of a not-very-disabled disabled person.

Further details are on the Calvert Trust website

It mainly involved vertigo and dizziness, so I spent a good couple of weeks crashing into things, nearly falling over, feeling nauseous and actually vomiting a few times. It also involved some fatigue, L’Hermitte’s and a not unpleasant hot sensation near my right ankle.

GP reckoned it was labyrinthitis to start with, so he gave me some drugs for that, to see if they worked even though my MS history has been peppered by vertigo. They didn’t, of course, so instead of going back to him, I went to my neurologist. One Dix-Hallpike manouevre later to eliminate BPPV and my first relapse for three years was confirmed.

I was prescribed steroids, but I didn’t take them in the end as I felt I was getting better and I didn’t fancy a week of the side effects.

Thinking about my GP, I asked my neuro about the possibility of an ear infection…

“Can you hear that?” rubbing his finger tips together next to my right ear.

“Yes.”

“And that?” next to my left ear, this time.

“Yes.”

“Do your ears hurt?”

“No.”

“Then it’s not an ear infection.”

So there you go. It was inflammation of the balance centres in the brain stem apparently. I’m very much better than I was, though I did have a funny turn yesterday so I reckon it’s there in the background somewhere.

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.

Very sorry to hear he has died – I loved his work. I have Trout Mask Replica in the car.

Let’s see how long it takes the media to announce that he died of MS. I will include links in the comments every time I find an offending news item.

The consultation involved him muttering about registrars not being up to their jobs, simultaneously finding a supposedly missing reflex in my arm and striking through some notes in my file.

I asked him about the permanence of my doublevision in the inevitable Q and A.

It seems that it probably is permanent, but you never know…

Lightning can strike twice in MS, in terms of the parts of the brain it affects. I know this from what I have read online and in literature. This is why you tend to get the same symptoms re-appearing over and over in relapses and the gradual worsening of symptoms over time.

With this in mind, apparently a future relapse could involve the formation of a lesion in a similar part of the brain stem which caused my doublevision in the first place (get this…) cancelling out the first lesion and setting my vision straight again.

That’s something to look forward to, eh?

When I reported back regarding my local orthoptist’s opinions regarding corrective lenses, he seemed skeptical, promising to get a second opinion from the big city hospital opthalmology department.

That was nearly two months ago, now. I still haven’t heard anything.

And when women with MS outnumber men with MS, two to one, why is only one of the eight candidates a woman?

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.

Or have I?

Beta interferon is supposed to reduce the likelihood of having a relapse and minimise the effects if you do get one. Back in January 2009, when I came off gabapentin, I experienced a temporary worsening of symptoms such as fatigue, pain, heavy legs and one instance of flashy lights in front of my eyes. Was it a minor relapse as the neurologist thought? Was it the side-effects of coming off the gabapentin? Or was it the underfoot rumbles of the MS volcano?

I don’t know. I suspect all three depending on when you ask me.

I have a similar thing going on at the moment. In addition to the usual symptoms, I have had a couple of weeks where I have had a worsening of pain in my arms especially, mild spasticity in my left arm and both feet, hands that feel as if they are gently transporting a cactus as opposed to the usual background tingle, heavy legs again, fatigue, mild vertigo, uncontrolled movements in my calf muscles and last night, definite phosphenes in my right field of vision as I moved my eyes around.

So is it the hot weather?

Is it the MS Monster rolling over in it’s sleep?

Or is it a mild relapse?

I’m not inclined to bother anybody about it until my next yearly meet up with the neuro. My neuro is “running late” this year, apparently. Running late in the sense of he can’t see me in June as would normally happen, but will be able to when his appointments begin again in August, and the 115 people in front of me in the queue have been seen first.

In the meantime, I have restarted taking the amitriptyline.

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