#Cycle100forMS

So I’m raising money for the MS Society and I’m doing it by cycling 100 miles. The challenge finishes at the end of this month (August 2020), by which time I hope to have raised a nice sum of money and will have become a little fitter by doing so.

“But Dave…” I hear you say, “you can’t ride a bike for toffee. You have no balance, and isn’t 100 miles pretty far to ride, particularly when you have MS and it’s the middle of summer? You’ll burn out!”

Well, thank you for pointing this out. I’ve actually adapted the challenge to fit my abilities, so instead of a regular bike, my wife found a second hand spinning bike from a local gym (it was the wrong colour, apparently), and I’m breaking up the challenge by cycling part of the distance every night. I’ve wanted some form of exercise bike for a while and I’m not a gym person by any stretch of the imagination, so having one in the garage is ideal for me and I’m down there most nights.

“But how can you travel 100 miles?”

Well I ‘cycle’ for half an hour a day in the late evening when it’s nice and cool and then I add up the daily distances that the bike clocks up on its odometer, and so long as I hit the target by the end of this month I’ve achieved my goal. As it turns out I hit the 100 miles at the end of last month, so I’m already there.

“Isn’t that a bit like cheating? Surely you should travel 100 miles in one go.”

Well I’m not a professional cyclist, or athlete. It’s more of a challenge for me to go out and cycle for half an hour every night on a bike that I set some resistance on, than it would be for Lance Armstrong, say, to go out and cycle 100 miles in one go.

“So how much money do you hope to raise?”

Well, that’s another target well and truly smashed. When I started out I thought a couple of hundred quid would be a good amount, but I’ve raised nearly £1,100 now.

“That’s brilliant! So what do you get out of the fundraising personally, and do you have any tips for anyone hoping to do the same?”

I made sure I targeted social media in such a way as to capture the broadest sweep of family and friends – Instagram, Facebook and Twitter. Facebook was the most responsive, even though I’m not on it much. My wife and one or two friends shared my updates and she has loads of family and friends and so forth, so it was nice to connect with people that way. I’d say posting updates when people are winding down on a Friday afternoon is the ideal time, particularly during the coronavirus situation when everyone’s staying at home more.

Apart from that, I sent an email around at work, and I picked up a few extra quid from casually dropping the subject into conversations. I’d say posting updates was key so people who have already donated feel like their investment has paid off, and also so that people who have made a mental note to sponsor me at some point are given a gentle nudge.

So far, about 60 people have sponsored me and it’s genuinely heart-warming when you find out another donation has dropped. You also find out that more people than you realise have some sort of connection with MS. If they don’t have it themselves, then someone close to them will, so it’s been a way for people to make a concession to the struggles their friends and loved-ones go through.

I’d say, if you’re thinking of doing some charity fundraising – do it. Make sure you have a real connection to the charity and each and every donation, no matter the amount, will give you a warm glow.

“I know you, Dave, and I bet you listen to Kraftwerk while you cycle. Tour de France, yeah?”

At least three people have made this point, so this is a genuine ‘frequently asked question’. The answer to that is I tried it once for a giggle but I didn’t flow with the tempo of ‘Tour de France Soundtracks’ – the album was a bit slow for me.

I started my challenge listening to podcasts but this made the cycling drag a bit, so I now listen to music. The ideal album for me to cycle to is Pink Flag by Wire as I know it like the back of my hand (it’s a favourite) and the tracks are short and fast and the whole thing just about fills my 30 minutes. The time flies!

“Great! So how do I donate?”

Well, thanks for asking. It’s really easy as I’ve set up a JustGiving page so you can read more about why I’m fundraising for the MS Society in particular, with some examples of how the money might be used, and you can make a donation by card or by PayPal. The cash goes straight to the MS Society and you can even donate anonymously if you want to. Just remember to do so by the end of August 2020 and thank you, it really means a lot to me. I’m doing victory laps now.

Just keep swimming

Well, I’ve just returned from a family holiday to Florida. It was 90% Disney just like the last time we went. Both my wife and my youngest are big Star Wars fans, so my youngest had a light sabre battle with Darth Vader and my wife got a hug from Chewbacca among the many highlights. If anything, it was just nice to have a fortnight away in 40 degree heat.

The return trip was a bit arduous though as it involved a faulty aircraft and a four hour wait on the tarmac in Philadelphia.

Phew!

Needless to say, sitting in such cramped quarters for such a long time while the captain repeatedly switched the plane off and then on again, is not good for me and my MS. I don’t sleep on flights anyway, I find it impossible, and for the six hours after the 2am take-off I think it’s fair to say I suffered a bit.

Anyway – I now know the following:

  • I like warm / hot weather. I’ve been suspecting this on previous holidays but now it’s official. A few years ago I would’ve said the opposite, but it’s far more pleasant to take it easy and carry around a t-shirt, shorts and sandals than jeans, coat, pullover etc. I feel much better for it.
  • Disabled loos in the places we visited seem to be an add-on to the existing gents as extra wide cubicles. This means that even if you feel justified using them they’ll be used by the general public anyway if the others are engaged. There doesn’t seem to be the same stigma around non-disabled usage as at home.
  • How to swim.

So there you go, all things I . . . hold on a minute – what was the last one again?

Yes, that’s right, I’m so proud of my older teenaged daughter, who succeeded where so many have failed, by patiently and good naturedly curing me of my 45 year deep-seated phobia of water and swimming pools. I’ve faced up to some pretty scary things in life both generally and (especially) as an MS patient, but my fear of swimming is right up there.

“Think back to the dawn of time and of all the millions of people who have ever died. How many of them drowned in a swimming pool?” she smiled as she persuaded me to doggy paddle a handful of metres to the edge of our villa’s pool.

Without batting an eyelid she skillfully turned me from someone who panicked each time I slightly lost my balance into someone swimming the backstroke, breast-stroke and even the crawl (with my head underwater the length of the pool), within an hour.

I ended up tiring myself out making up for lost time. Every day afterwards I gave myself a big grin by double-checking that I hadn’t forgotten how to do it.

The next step, I feel, is working out how to breathe and swim at the same time, so I might be looking at taking extra lessons now that I’m back in Blighty.

The thing that amazes me though, is how easy it was to take that extra step and stop panicking. Once I realised how I naturally float, I was away. I did the starfish float, I tried to get my bum to touch the floor of the pool and failed, I even held my breath and tucked my knees into my chest and let myself roll in the water.

Why on earth didn’t I do all this years ago?

Also when I mention it to others, I find that most people I know haven’t really made it to the next rung of the ladder. I suddenly seem to be in the middle of a sea of people who aren’t that proficient at swimming. When I jokingly mentioned the fact that I like swimming backstroke because I can actually breathe, a workmate agreed and said in the event of a ship going down he’d backstroke to the lifeboat for that very reason.

Is it difficult to progress as a swimmer, then? Is it because most people don’t swim regularly enough to have built up a stamina for it? All these years I’ve been labouring under the misapprehension that everyone is as good as Ellie Simmonds or Steph Millward albeit a good deal slower.

Of course, my daughter and all her friends haven’t reached a lifetime of apathy yet, so they’re all fantastic swimmers apparently.

So why have I spent a lifetime as a non swimmer? Well, I mainly blame moving house from Manchester to the rural redneck backwater of East Anglia for a few years as a kid; my crippling shyness at the time, coupled with an inexperience of swimming pools, particularly freezing open air school ones and the fact that goggles didn’t seem to have been invented in the late 70s / early 80s. Also, the lack of encouragement from teachers and parents.

Various family members did attempt to teach me to swim, but they tried to do so while up to their chest in the balmy sub-tropical waters of the North Sea. Claiming, while I steadfastly kept my arms crossed and my feet anchored to a pebbly beach, that their sadistic dads and uncles did the same to them so why wouldn’t it work with me? Or they’ve dangled the ten-year-old me by the ankles off the ends of piers for fun – memories I’ve obviously repressed until now.

Even as a teenager, I pulled an outstretched hand (and the fully track-suited swimming teacher attached to it) into the deep end of the school pool after thrashing around in a panic when a float torpedoed from my slippery grasp.

If I can keep on swimming in an environment I’m comfortable with, it could be just the exercise I need. The local MS Society branch have a pool meet-up one evening a week in a special school within walking distance. Here they obviously have hoists and the like for those with mobility issues but also a nice warm pool. So I might explore that option if it’s suitable. Also, the local authority where I live have nice friendly looking teachers who do group and one-on-one sessions for adults.

Until then I’m looking forward to my next holiday – camping in Cornwall – and yes, I’ve made sure there’s a pool.

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

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.