Ash and We Are Scientists team up for the MS Society.

Yay – I have always had a bit of a soft spot for Ash, so I was delighted to see they have recorded a version of Washington Parks by a guy called Robert Manning.

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”

Calvert Trust holiday

The Calvert Trust has teamed up with the UK MS Society to offer a taster weekend for people with MS at one of its centres in Kielder, Northumberland in October.

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

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.

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.

Life with MS – analogies

There seem to be analogies every which way you turn when you discuss MS with other (oh heck!) “sufferers”.

The most popular one must be the MS MonSter (see what I did with the letters?). The one that sits on your chest in the morning and stops you getting up, demands a piggyback if you travel anywhere, pokes you in the eyes, trips you up, ties extra knots in your shoelaces etc.

My very first post on this blog mentioned this fella. There is even an MS Society (UK) publication called “Shrinking the Monster” – the downloadable pdf of which I would link to if I could be bothered with their irksome, user-unfriendly website. It is actually, quite a useful and beautifully conceived document outlining various coping strategies for house-training the beast. (I’ll search it out and add to the links menu soon – I promise).

Another analogy I have mentioned before is the MS terrorist group, lying in wait within the central nervous system, ready to set off their explosives or kidnap your senses, sometimes causing permanent damage (like they did with my doublevision, the bastards).

Not a million miles away from that analogy is the immune system as Gestapo which I have heard bandied around a few times, though I can’t help thinking that the keystone cops is more accurate. It’s there to do a job, but ends up creating more havoc in it’s wake.

The graphic artist Johnny Hicklenton, who ironically I have mixed feelings about, likens his MS to being in a bad relationship. One day it’s all joie-de-vivre and happy happy, the next it won’t let him walk down the road to the shops, without causing him extreme pain.

My current thinking is from a perspective of someone in remission. MS to me right now, at this moment, is like living on a volcano. It has been a while since the last eruption, and my garden is starting to grow back (despite the solidified lava flow that I can see from the kitchen window). Things are generally good, but the odd rumble underfoot reminds me it’s only a matter of time.

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