Reasons to be cheerful (part 1)

After 18 months I have finally found the positive. And I shall accentuate the positive. In fact I shall compile a list of positive outcomes of owning MS. It may be a short list, but it will be my list...unless of course anyone else will add to it...which I would welcome. Florida Dave Carey is devising the MSers guide to Orlando and I think the top ten MS symptoms to rejoice about might prove a useful addendum...so it goes like this...

Our annual family vacation to Spain occurred last week. We always head for my late fathers house in Nerja. A beautiful area of the Costa Del Sol where the children swim with abandon and adults relax with a San Miguel and a fish kebab...Now the highlight of this week is the trip to the water park in Almunecar. A sprawling complex of thrilling water slides and thunderous tunnels using sea water and more San Miguel. The down side to this trip has always been the red asphalt path that leads from slide to slide. Cos it gets hot, I mean effing hot. The sun heats it through the day until it's the equivalent of walking on hot coals. British tourists are always spotted by their ridiculous owch–hop–skip–hop–find the shady bit of path–dance. The Spaniards of course stride slowly and lazily across the burning red path with a nonchalance that we Brits could never conjure...until now. And conjure it I did. I knew my soul had lost all feeling (what a tragic statement, I’ll start again) I knew my soles had lost all feeling some time ago when the French Neuro-tester devised the stabbing test. Am I stabbing you with the sharp end or the blint end? he would say. All was fine until he came to my feet when it became apparent that I wouldn’t notice a Scimitar slicing through my old plates of meat let alone a broken cocktail stick (it’s a high tech trial, I can tell you)...but lo! What joy my numb feet bought me in the water park in Almunecar. I strolled, I dallied, I nonchalantly hung out on the boiling red path. I smirked as even a Spaniard winced at the Mediterranean heated asphalt course. ..so next time your wondering what to do with your numb feet....get on a plane to Malaga, drive up the coast to Almunecar, visit the water park and look smugly around at those people doing the hop-owch-skip-owch-find the shady bit of path-dance.

In Pilot's hands

So, interesting things abound and while my MS sleeps, my guitar gently weeps. That's a lie. I don't play guitar but you can never tire of quoting fab four lyrics. (my brother will explain that lyric is a plural and thus the last sentence made no sense but sod it, I'm feeling reckless). What brings the recklessness on? Well the thing is that many things occur in the MS world....

First, I am issued with a passport, yes a passport, for my Chinese hamster medicine. (no photo required). I have to travel by plane a lot this Summer/Autumn - this is in itself a shame as I hate flying. No, it really scares the bejesus out of me - but Edinburgh, Spain, Edinburgh, Moscow is the quite frankly unlikely list of jet setting destinations that I will be leaving my life in the hands of pilot's for. Now without my passport people might assume I intended to attack flight attendants, inject them with rebif and delay their onset of secondary progressive MS. This could become a new strand of terrorism, maybe a medical terrorism. Doctors could board flights and give passengers Tami-flu (Not Tami-Wynette, I'd worn them of this mistake) or a heavy dose of 'night-nurse'(TM). I realise this could be subject to abuse...

Now along side this, is a warning, about flu. The hamsters are it seems, an immune suppressant. Now when your immune system is suppressed you are more likely to get flu...swine, man, common, bird....it matters not which one...but, here's the cunning plan (bear with me). The side effect of the hamster injections is flu like symptoms...which we combat with paracetamol and ibuprofen...so now, all you users of immune suppressants...are your flu like symptoms a side effect of your immune suppressant or merely your immune suppressant working effectively? I leave it in your hands, which, I should remind you, the latest government guidelines suggest should be washed.

No country for middle aged men

Discovering I had MS relatively late in my life is one thing. I was 43. It was late onset of MS. Far worse, far more sinister and altogether disturbing has been a recent development. Late onset of Dolly Parton. I know when it began. Beth had to use '9 to 5' as part of her reception assembly. I downloaded it so she could practise it in the car. Wake up in the morning...I have always hated country. But then i-tunes offered to download the rest of Dolly's hits for £3.49. Bargain. Jolene, Jolene, Jolene, Joleeeeene, ...please don't take him, islands in the stream, that is what we are.

What was going on? I was listening to Dolly...no, I was singing along to Dolly in the car. And iyiyiyiyiyi will always lurve yohooooo.... Fortunately it hadn't developed into full blown country. I could still take refuge in Blue Oyster Cult's Don't Fear The Reaper (digital remix). For every 'coat of many colours' there was still a 'Kashmir', for every 'Backwards Barbie' there was still a 'Wish you were here'. I could be strong. I could be anti-country.

And then it went really wrong. Badly wrong. Someone gave me a Jonny Cash album. And before I knew it I had developed full blown country. I tried to buy some Tami-flu but in my confusion I came back with Tami-Wynette. It was frightening. I was short of breath. I started referring to my wife as Lucille. I sent my kids out to work the range. I was offered a trial of Punk but I got randomised to opera. Perhaps middle aged men need country. But I do draw the line at Billy Ray-Cyrus and his daughter.

What d'ya mean he recorded 'Achy Breaky Heart'? Count me in.

Let's (not) dance

It started during a performance of improvised Japanese contemporary expressive dance. I should explain. What started was my own personal heat wave reminiscent of the great Summer of 76. I was a drought area by 8:30pm. I was on fire. Head to toe. The Japanese contemporary expressive dance thing is more complicated. It was an odd thing to attend and I've probably damaged my children for ever, but attend we did. We came, we saw, we perplexed.

Look, there was a time in my life...I was younger...when (I believe the phrase is) I experimented with mind altering drugs...I was reading a lot of Aldus Huxley, listening to a lot of Pink Floyd and generally discovering things that could make me dance when god alone knows...I hated to dance. It was social phobia overcoming drug therapy with the possibility of a date at the end of the evening. The only trouble was identifying the end of the evening. Anyway, back to the point. This all new MS symptom was a heat rush that was tangibly reminiscent of those heady days. Only it wasn't any fun. It was just a rush of heat with nerve endings exploding and my body heating up from the inside out. A bit like being inside a microwave...although that is, I hasten to add, a guess. Don't try it at home home in order to contradict me...I believe you.

The thing about the Japanese expressive dance thing was that it was more like a mind altering trip than anything I've experienced for 20 years. Particularly when combined with the rush. Dancing across the stage a lady appeared with a large lump of dough attached to her face which she then began to pull apart and throw at the audience. I began to feel a deep seated and uneasy sense of familiarity. A performer that gradually taped herself to a chair with garish red duck tape took me right back to the late 80's. Gradually it all began to blend. MS, LSD, E. It became some weird anagram. I love anagrams. When I've worked it out I'll let you know. Meanwhile I will not dance, expressively or otherwise. It's too dangerous. Thankfully the heat rush subsided after a short intermission. In remission (t).

Can't sleep, won't sleep

Fear of insomnia...that's what keeps me awake at night. I used to sleep so well. Midnight, snoring, nothing could wake me. Phones, alarms, children...once in the land of nod I was there for keeps, well, 8 hours. Yet I was never one for over sleeping. I liked to be up and about in the morning, not idling by the hours til lunchtime. Yes, sleep was an ordered pleasure.

But not so now. It could be the MS. It could be the hamsters. Sometimes it's the hands on fire, sometimes it's the pliers on toes and sometimes it's just...wide awake time. But whatever it is, something wakes me regularly, however tired or fatigued I may be. Whatever time I hit the sack I'm awake sometime between 3 and 4. And there is a whole strange world that goes on between 3 and 4.

The cat for instance, can hear me coming up the stairs (yes, our house is upside down) from three gardens away. She can be through the cat flap and by her food bowl before I've reached the top step. If perchance I decide to turn over and hope sleep returns the cat has other ideas. Yo, Dave! Wake up, Come on, I'm upstairs. Come on Dave. You know you're awake! Stop fooling yourself... All this is said in a wild miaow that sounds like the onset of being possessed in a sequel to the exorcist.

Talking of being possessed...youngest child at 4 in the morning. She sneaks ever so quietly in from her perfectly adequate single bed to make our double over crowded. Then she has the ability simultaneously put her feet in your head, back, face and chest whilst stealing the quilt with a devious slip of the elbow. Whilst we sleep vertically she gradually turns horizontal until I'm reduced to lying on my side, balancing precariously on the outer 3" of the mattress. Enough is enough and I decide to take my chances with the possessed cat.

Now I'm upstairs I may as well do something...I know I'll switch the computer on and get on with the blog...What shall I write about? I know...Fear of insomnia...that's what keeps me awake at night.

One hand clapping

What is the sound of one hand clapping?...so goes the Zen riddle. Of course there is no answer to a Zen riddle, just the pursuit of enlightenment. Somehow, I didn't know for sure, but I suspected, Buddha wouldn't be at the National Indoor Arena today.

'Stick it to MS' reached it's climax and Simon and me headed north to Birmingham at the crack of dawn. Six hundred drummers, twelve hundred hands holding twelve hundred sticks...what's the sound? An effing row to be honest. What's the sound of 600 hundred drummers playing quietly? Now that is a real Zen riddle cos they can't. It doesn't function in brain. Drum? Quiet? Bang, bang, bang...We will, we will rock you, rock you. What's the sound of 600 drummers being asked to take a 5 minute break? Bang, bang, thwack, thump, thump, snaaaareee roll, cymbbbal CRASHHHHHH, runaroundthetoms, runaroundthetoms, double snare hit, splash.

After four hours of a deafening cacophony that would have had John Bonham coming back from the dead to complain that him and Mooney couldn't hear themselves think I became convinced that Multiple Sclerosis wasn't such a bad disease. Surely no illness was worse than this hell.

And then we came to the defining moment. The world record attempt. 600 drummers sticking it to MS. Simon was poised, double bass drum pedal at the ready....My ear plugs were buried deep - a sense of impending doom weighing heavily on me. Bang, bang, crash, smash, bang, bang, crash, smash...Then, imperceptibly it began to happen, out of the mists of hell appeared a rhythm, in time, in tempo, a unison sound, 600 drummers together, playing their hearts out. It's like Riverdance meets the Edinburgh tattoo with the Kodo drummers of Japan joining in. Christ, I'm tapping my feet along and bloody hell, Buddha just appeared. What's the sound of one hand clapping? I don't know but the sound of 600 drummers raising money for MS is really good...and it's most enlightening.

http://news.sky.com/skynews/Home/UK-News/Drumming-Guinness-World-Record-Hundreds-In-Birmingham-Smash-Record-And-Raise-Money-For-Charity/Article/200907215337165?lid=ARTICLE_15337165_DrummingGuinnessWorldRecord:HundredsInBirminghamSmashRecordAndRaiseMoneyForCharity&lpos=searchresults

That was the year that was

And so inexorably the cogs of time have turned until here I am celebrating my anniversary. Not a birthday, not a wedding day, not a 'where were you when Jacko/Diana/Lennon/Elvis died?' (delete as appropriate). But it is a year since my Neurologist, having shown me a selection of lesions in the brain on my MRI scan spoke the immortal words...I think you'd better sit down. I must say that having seen these tiny patches of white in my brain that turned out not to be some careless tippex marks from an over enthusiastic undergraduate doctor, the words It's probably Multiple Sclerosis seemed something of a result...so it's not cancer of the brain? No, it was definitely Multiple Sclerosis. Excellent.

On the way home from hospital the words Multiple Sclerosis seemed to gradually get worse. MS is one of those big illness's that you've heard about since childhood. Of course Neuro had given us the new 21st Century medical mantra...don't google it...which we promptly did...8, 360, 000 results in less than half a second. Multiple Sclerosis is a proper, serious disease. This calls for a cup of tea.

A year later and life has changed beyond all recognition....hang on, no it hasn't. I have injections every other day, but I still go to work every day. I have various pains, aches and numb spots and occasionally I'd rather sit than walk ...but I can still go to the gym. I have some days when I really can't get out of bed but a couple of years ago I had hang-overs that had the same effect. Some times I can't remember things I knew very well a while ago but I'm assured by everyone that my memory has been rubbish since anyone can remember. There are the spasms of course which are generally ignored at home and a bit embarrassing in the pub...but hell, whats a twitch between friends.

Enough of this sitting down, I going to stand up while I can.