Fibro…what?

If I can put my customary silliness to one side for today, I’d like to talk about something a little more serious.  Wait.. don’t navigate away – it’ll still be interesting.  I hope.

What I’d like to write about today is Fibromyalgia. It’s a medical condition which is literally very close to home, in that the person I love and am planning to get married to has it.  If you haven’t heard of it, don’t worry, I hadn’t heard of it prior to meeting Corinne, but since I’ve had it explained to me, it now seems to be extremely common for something I didn’t even know existed before 2010.  My cousin’s ex-wife has it.  A friend of my best friend, Robert, suffers from it.  However, most people I talk to haven’t heard of it – and that needs to change.

What is it, exactly?  Well, simply put, Fibromyalgia – taken from the Greek words meaning connective tissue and muscle pain – is thought to be a disorder of the central nervous system and manifests itself as (often severe) chronic and widespread pain throughout the body, often coupled with other symptoms including insomnia, fatigue and stiffness.  Doctors still don’t know for certain what causes Fibro and, indeed, some Doctors still refuse to diagnose Fibromyalgia because of their lack of understanding of it and the fact that there haven’t been any conventional and concrete tests in order to make a cast iron diagnosis.  In short, Doctors, like any other humans beings, have been quick to throw scorn on something they don’t understand.  Thankfully there are more and more enlightened Doctors out there these days, but people still struggle to have their illness recognised and treated for what it is.

Unfortunately, at present, there is no cure for Fibro and many of the medications used to manage the symptoms are usually used to treat other conditions.  Perhaps this is because it’s so rare, right?  Wrong.  It’s estimated that Fibromyalgia affects approximately 2 to 4 percent of the population (which, out of a UK population of 61.5 million in 2009, means that there could be well in excess of 1.5 million people with Fibromyalgia in this country alone), with around 90% of these sufferers being female.  It’s much more common than you’d think, this condition that so few people have heard about.  It’s not a new thing, either.  Sufferers throughout history are thought to include Florence Nightingale and Charles Darwin, although we seem to be no closer to understanding it now than in their day.

People meeting Corinne on a “good day” may be under the impression that there is very little wrong with her.  Her cheerful nature, wonderful smile and positivity would be one of the first things you noticed about her, before you clocked the walking stick.  The fact is, that even on her best days, she is in constant pain and is nearly always managing pain with huge amount of Codeine and Paracetamol, as well as other medication to lessen the impact of her condition.  Doing ordinary things like going out shopping or taking the kids to the park takes planning, resting beforehand and resting afterwards – and these things can only happen on a “good day”.  Even on her better days, she can crash unexpectedly and need to lie down or sleep.

On bad days, it upsets me to see just how much pain she is in.  She looks pale, distressed, older.  She can’t think properly, has sensory overload and nothing she does to manage her pain seems to work.  On those days, there is nothing she can do other than attempt to have complete rest or sleep her way through it.  The majority of days, however, are neither good nor bad, but somewhere in the middle, days where she has to live with pain that, I’m sure, would drive someone “normal” crazy in a short amount of time – but she gets on with her life as best as she can.  She seldom lets it beat her and attempts to live as regular a life as possible, managing to be a wonderful partner and Mother of three.  For that, she has my deep admiration and utmost respect.

It can be difficult living with and caring for someone with a disability, but a lot of the time I am able to almost forget about it, even though it is in the back of my mind.  I keep track of her medication almost as diligently as Corinne does and always make sure that I make her life as easy as it possibly can be – if I’m able.  The fact of the matter is that it is, undoubtedly, a severe disability on Corinne’s worst days and “merely” a significantly debilitating condition when she’s feeling at her best.  Personally speaking, although I would do anything to bear her pain, I couldn’t imagine living with something like this, day-to-day, and the fact that it is so very under-recognised and misunderstood makes it even worse.

Corinne has many “Fibro friends” on Facebook, with whom she can vent and share her day-to-day trials as well as the positive episodes of her life.  She also has done her best and continues to try to help others who need information about the condition, as she has made it her business to find out virtually everything there is to know about the possible causes of, treatment of and coping mechanisms when living with Fibromyalgia.  That’s yet another thing I admire about her is that she makes so much time for others, often receiving private messages from people in the UK and around the world with Fibro and typing out lengthy replies with advice, links and, above all else, empathy and warmth.  She amazes me and it’s just one of the many things I love about her.

So, what’s the point of this ‘blog entry?  Well, it’s spreading the word, really.  I’m not after your hard-earned money.  I’m not asking you to donate, distribute flyers, go on sponsored runs or to eat your weight in lard.  I just want you to know about it.  To be able to pronounce it (Fi-bro-my-al-ja or sometimes Fi-bro-my-al-gi-a), to be able to say that you’ve heard of it, to be able to speak to one of the thousands of people who suffer with it and, at least, be able to tell them that you basically know what it is.  That means something.  There’s a lot of ignorance out there.  Some Doctors still refuse to recognise it as a real condition.  There have even been hate groups on Facebook insulting sufferers, labeling them mad and lazy.  Believe me, it’s real.  I live with it every day.  I see the woman I love in so much pain, it breaks my heart.  If it was a terminal condition, it would have so much more publicity.  If it actually killed people, it would be foremost in people’s minds, along with HIV, MS and Cancer, but Fibromyalgia merely leaves sufferers often wishing that they could die.

There is an awareness campaign called http://www.fibroduck.com/ which aims to get over a million little spotted rubber ducks out there in the world, to spread the word about Fibromyalgia.  See if you can spot any of their little ducks while you’re out and about.  Currently, on the home page, there are photographs of the “fibroducks” from all over the world, which – if you visit the website – will give you an idea of how widespread Fibro is.   However, that’s really up to you.  If you’ve come this far and read this ‘blog entry all the way through, then thank you.  A little understanding of a common condition that people have rarely heard about is all I’ve set out to achieve.   I hope I’ve managed to do that.

2010 – Review of the year

Sorry that I’ve been a bit quiet in the last week or so.  I haven’t been in the best of health and, well, it has been Christmas and I’ve also had to work.  Life has to come before ‘blogging.

So, 2010.  Is it so very predictable to talk about the year just gone when it comes to the end of the year?  If so, then call me Mr. Predictable of Predictable Lane, because that’s exactly what I’m going to do.  However, I do find it much easier to talk about the year 2010 at the end of December when lots of things have happened, rather than to do so in January when you’ve got very little material to work with.  Call me Mr. Conventional of Conventional Street, if you like, but make up your mind.  I can’t be Mr. Predicatable and Mr. Conventional.  Anyway, if I reviewed this year before it happened, at least I’d have been able to accurately predict one thing… that the England football team would (under)perform like a bunch of talentless, over-paid, non-league players at the World Cup.  It’s no exaggeration to say that we were one of the very worst teams out there.  Even North Korea seemed to have more of a chance than we did.

My World Cup, bizarrely, was spent in Milan.  The thinking behind that was that Italians are football crazy and spending a couple of weeks in an Italian city rich in culture with lots of exciting games to watch in the evening would be a great way to spend the early summer.  Unfortunately, the reality was a little different.  The Italians (or specifically the Milanese) seemingly couldn’t give a toss about the World Cup and we struggled to find anywhere showing the live matches other than an Irish Pub with extremely rude staff or a local bar which they seemed to open when they felt like it.  On the whole, I enjoyed the experience, but found it extremely expensive (16 euros for a pint of Carlsberg in one bar near the station) and a bit same-y after a while.  I would have liked it much more if we’d have been there for a week rather than a fortnight.  Oh, and if England had won all of their games and played with a little bit of skill and pride instead of playing like a bunch of lobotomized monkeys… but that would have surely been asking too much.

Let’s rewind to how the new year started. On December 31st, 2009, I was working a late shift and finished at a depot in North London at approximately 11:00 p.m, after which I was to be taxied home.  I was hoping to get to my home in South London in time to see the new year in, but it was looking increasingly unlikely and, as the time ebbed away, I knew that I was going to be spending my first minutes of 2010 with a London taxi driver.  Sure enough, as Big Ben chimed, I was going past a 24-hour convenience store in the Wandsworth area and a group of drunken teenage chavs outside the shop were holding their cans of newly purchased Stella Artois in the air shouting, “Happy New Year, you fuckers!”.  It was at that point, just as the year began, that I got a bit of a sinking feeling about 2010.  Surely things could only get better?

In fact, the whole year has been a bit on the strange side, but also really rather wonderful.  I met someone in late January on a very silly group I created on Facebook, we got chatting, soon exchanged very frank life stories and I began to get some rather foolish feelings of love before I had even met her.  Then, late on February 9th, she invited me to Brighton to come and meet her and I arrived, on my motorbike, at just after midnight on February 10th.  After a few hours talking and, after a bit of a kiss and a cuddle, I left Brighton on Cloud 9, having met the person I’m now planning to spend the rest of my life with.  Unfortunately, that elated feeling was interrupted by me losing control of my motorbike on the way home, coming off at about 40 mph in icy conditions and ending up in Redhill Hospital.  The outcome of this was me tearing the anterior cruciate ligament in my left knee and having about five months off work, which was much less fun than it sounds.  Still, the time off work allowed me to spend more time with Corinne than I could have if I’d have been working, so I suppose being in pain and having trouble walking had its perks.  Probably my single highlight of this year was when, on August 27th, Corinne and I got engaged and, around the same time, I moved in with her.  Life doesn’t get much better than that.

I’ve been fortunate enough to see a lot of great artists this year, such as Jeff Beck (great), Eric Clapton (disappointing), Brendan Benson (superb), James McCartney (promising), David Ford (sensational), Ray Davies (not great), Paul Weller (good, but self-indulgent), Divine Comedy (excellent), Jason Lytle (good) and Squeeze (brilliant).  I’ve been unfortunate enough to miss quite a few concerts too, such as Grant-Lee Phillips (owing to volcanic dust), David Ford (three times – twice owing to my motorbike accident the week before and once, last week, thanks to the snow) and Rufus Wainwright (family crisis).

Apart from my favourite albums (which can be viewed on a previous ‘blog entry, dated December 8th, 2010), my main forms of entertainment have been television and film.  I’m normally much more of a book reader than I have been over the past twelve months, but the only relatively new book I’ve read this year has been Stephen King’s Under The Dome – and that was published in 2009.  I thoroughly recommend it, though.  It’s one of his best.  Many of the films I have gone to the cinema to see in 2010 have been accompanying my daughter, Bethany, who turned fourteen this year and, in truth, I have only seen a handful of new films.  However, out of the ones I have seen, the three films to really stick in my mind as exceptional were Alice In Wonderland, Despicable Me and Inception.  I’ve spent the rest of my film-watching time catching up with a lot of things I missed last year, courtesy of Sky Movies.  In fact, I only watched Avatar for the first time a couple of nights ago, so it’s fair to say that I’m not exactly in the running to present Film 2011 any time soon.

2010 has been a rather good year for television, though.  New programmes I have enjoyed include the rather tasteless Him & Her, which was like The Royle Family with added sex, set in a bed-sit, Coppers, a no-holds-barred documentary on the police force and Frankie Boyle’s Tramadol Nights, an uncompromising, offensive, outrageously funny stand-up and comedy sketch show.  Favourites which have returned and haven’t disappointed are Doctor Who (OK, Matt Smith isn’t half as good as David Tennant, but it’s still a great show), the ever brilliant House MD, Peep Show, QI, True Blood and the criminally underrated Harry & Paul.  The third series of The Inbetweeners was supremely funny in places, but over-the-top and extremely disappointing in others, with the main roles often descending into caricature.

Of course, it feels almost frivolous talking about this year in terms of my life and my favourite music, films and other entertainment.  There have been some devastating world events, killing – in total – hundreds of thousands of people.  Earthquakes, tsunami, floods, volcanic eruptions… some of the news has been difficult to process and unimaginable in consequence for people living a relatively comfortable life in the United Kingdom.  What can we do?  Alleviate our guilt by throwing a pound or two in the collection buckets at train stations or the high street.  Maybe set up a direct debit to help fund the Red Cross.  Go about our safe lives feeling slightly guilty that we have got it pretty good, compared to so many others.  However, it has to be said that you solve nothing by living in a state of perpetual guilt.  There’s nothing to be gained by attempting to absorb all of the pain and suffering in the world and continually reminding everyone that their troubles, compared to others, are minimal.  People don’t want to hear it.  There’s (nearly) always somebody worse off that you, but that doesn’t always make your worries easier to bear, nor is it any great comfort.  Of course, perspective can be lost sometimes – like that woman from Chatham who rang 999 to report the theft of her snowman or, even, the reaction of the world to Mary Bale, the woman who flung that unfortunate cat into the wheelie bin.  Yes, what she did was cruel and wrong, but what was even more shocking for me was the amount of death threats and threats of violence that she received for that moment of madness.

Of course, I can’t sign off without acknowledging our change of Government in the UK this year, from an unpopular Prime Minister that nobody voted for to an unpopular coalition that, well, nobody voted for.  Unfortunately, I was one of the many people who the Liberal Democrats made a complete twat out of, although, in my defence, I was personally attempting to re-elect the affable and effective incumbent Carshalton & Wallington MP Tom Brake.  The fact that the whole party suddenly became the one which I agreed with most was just a happy coincidence.

With the introduction of proportional representation/preferential voting instead if the antiquated first-past-the-post electoral system, the scrapping of University tuition fees, higher taxation of the super-rich and people who earn up to £10,000 a year paying no tax on their income, this was a party I felt I could get behind, after feeling well and truly betrayed by the Labour Party.  I’m not sure that anyone could have seen coming, however, the fact that nobody got an overall majority and the Lib-Dems, holding the balance of power, deciding to form a coalition with the Conservatives, rather than their more natural political allies, Labour.  Of course, all of the Lib-Dem campaign promises have gone out of the window and they have lost a huge amount of support and credibility, as they are seemingly fitting  in with the Tory ideals and policies rather than having any great influence on the present political events.  It’s all very disappointing, but what makes it even harder to swallow is the fact that my vote was, effectively, a show of support for those bastards who are currently in power.

Well, tomorrow will be 2011.  It’s just another day, very much like today, but a new year is often a symbolic event for people.  It’s a time when you can put the events of the previous twelve months behind you and start anew.  As for me, I’m looking to continue building my life with my beloved Corinne and our family, to maintain and build relationships with my two daughters from my previous marriage, to plan for a wedding in 2012, to completely transform the house we live in and, last but not least, to learn to drive.  Yes, although I’ve been driving trains for years, I don’t actually have a license to drive a car.  Shocking at the age of 35, I know, but I’ve never really ever felt the need, until now.  I’m also resolving to keep writing this ‘blog.  That may be good or bad news to you – although if it’s bad news, why are you reading this in the first place?  Are you a masochist, or something?

Other things I’m looking forward to in 2011 are new albums by Iron and Wine, Ron Sexsmith, Teddy Thompson, R.E.M. and the follow-up to The Seldom Seen Kid, one of my favourite albums ever, from Elbow.  I’m also rather excited (already) that I’ll be seeing Elbow at the Brighton Centre in March.  I’ll be very surprised if that isn’t one of the best concerts I’ll go to next year.  In the pipeline are new albums by Coldplay, Julian Lennon, Foo Fighters and Rush.  I’m still hopeful for a new Jeff Lynne album, perhaps a new George Harrison release and maybe even Noel Gallagher will break his post-Oasis silence.  Liam’s group, Beady Eye, are releasing an album at the end of February, but surely that isn’t going to be much good… is it?  As for television, I’m also anticipating the return of Torchwood.  It’s been too long.

Well, it’s customary at this point to wish you all a very happy, healthy, prosperous 2011, full of good fortune, tasty sandwiches, interesting and varied days, wine, song, love, sex, sexy love, lovey sex, vitamin c, decent coffee, frequent refreshing cups of tea, baths, showers, bidets, immersion heaters, step ladders, sunshine, lollipops, rainbows, lucky pennies, dogs, frogs, hogs, logs and snogs.  OK, not snogs.  I hate that word.  So… yes.  I wish you all of that.  Feel free to miss out the parts you don’t want, but life often brings you many things you don’t want, so it’s often better to have an unwanted immersion heater than a poke in the eye with a pointed stick.  That’s my philosophy, anyway.

Happy new year, you fuckers!

Handy Andy

After a day putting together cabinets, erecting signs and generally being handy around the house, it suddenly struck me – when did I gain the ability to do this sort of thing?  I was absolutely terrible at anything to do with handiwork in the home when I was younger.  Indeed, the only “do it yourself” I showed any enthusiasm for before I was married involved an erotic magazine and a box of tissues.  Even after I first got married (at the tender age of 21 – wonder why that didn’t work out?), I couldn’t do anything practical without major consequences.  Bad ones, usually.  I once tried to put up a curtain pole and it ended up with it being successfully attached to the wall on one side, but a huge hole in the plasterboard on the other side and me using a six-and-a-half-foot plank of wood to prop up the edge of the wooden pole as a makeshift.  For two years.  Yes, for about two years, a large plank of untreated pinewood stood on its end in our living room, holding up that pole.  I wish I was joking, but that actually happened.  Still, it was a talking point – usually about how awful I was at DIY, naturally.  Of course, I blamed the state of the walls in the flat for my inability to affix the other end of the pole, but the professional who came in to do the job managed to fix the pole to the wall in a matter of minutes.  Bastard.

Still, that was a great piece of work compared to my attempt to wire an electric cooker to the mains.  Simply put, I soldered in the wires when they should have been screwed in.  Impressively, it lasted for a few years before it exploded with a massive bang, producing a big cloud of black smoke, but it was pure luck that it had lasted that long.  The electrician who inspected (and condemned) the cooker afterwards was noisily cursing the bloody idiot who wired it up, telling me that the bloody idiot could have killed me, my wife and my child… so I sagely nodded along in agreement, tutting and shaking my head in all of the right places.  Of course, I wasn’t going to admit that the bloody idiot was me.

Not too long ago, I’d convinced myself that DIY just wasn’t my thing, but I’m proving myself wrong these days.  However, I’m wondering if it’s just an age thing.  There are lots of things I’m reasonably good at these days that I didn’t have a clue about when I was younger.  I was hopeless in the Craft, Design & Technology class at school.  All of the other pupils took their masterpieces home with them – mine generally went in the bin while the tutor smiled sympathetically at me.  When I was 11, I actually managed to make a plastic photograph holder which involved strategically bending a piece of perspex.  Even then, it had a serious kink in the top of it which meant that the photo it held was taken underwater.  My Mum still had it on display in the dining room, but it was bloody awful and I always felt sorry for my Nan and my two cousins who were trapped inside that abomination.  Another disaster was the sports car I attempted to make out of clay in Art class.  It turned out so terrible that I claimed that I’d honestly set out to make a model Skoda.  It was supposed to be a Porsche.

I truly believe that my school knocked a huge amount of confidence out of me.  It was an all-boys school, naturally a very competitive environment, and there was a lot of bullying, teasing and physical violence.  The pupils were pretty bad too.  I quite enjoy some sport these days, but I used to dread P.E. days back in my senior school.  I honestly don’t recall having any encouragement in the first few years I was there.  My P.E. teacher generally explained things once at the start of term, lost patience when I didn’t grasp the concept immediately and then spent the rest of the year telling me exactly how fat, slow and useless I was.  On cross-country runs, my sadistic Scottish teacher used to run behind us kids struggling at the back and literally kick us up the arse hard, shouting such positive words of encouragement like, “run faster you fat knacker” and “move those legs, Sween-ball”.  Needless to say, he wasn’t exactly my favourite person in the world.  Being forced to do sports I didn’t like, like Rugby in the freezing cold Winter and Hockey in the summer, where a rock hard wooden ball could leave a bruise in your shins for a number of months meant that I lost all interest in doing any kind of competitive physical activity.

In fact, I think I gave up on a lot of things in my teens, simply branding them a lost cause.  Art, craft, sport… all lessons I would bunk off from and not even bother about the consequences.  I just didn’t see the point.  I mean, I wasn’t a bad kid, just strong-willed, with a low tolerance for things that I didn’t see the point in doing.  When I skipped lessons, I didn’t sneak off smoking or drinking with the rebels – no, I went to the huge library in Birmingham.  Mainly to look at the photos in the sex education books, sure, but at least I was learning.  I’d also take the train down to London for the day instead of going to school too.  Sometimes I even paid.  No, the only subjects I actively enjoyed and attended were English, Music and… actually, that’s it.  I really disliked my school and I think it disliked me.

Of course, the reality of the situation is that I probably wasn’t terrible at these things back then.  I just didn’t like being forced to take part in things I didn’t completely understand and didn’t have any confidence doing – so I didn’t really try.  When I do things now, I’m sensible enough to  make sure I know what I need to do before I start, so that I can do a reasonable job of whatever it is.  Also, I know that I’m doing it for myself – or for the family, not because it’s something I am being forced to do.  Plus, and this may be the most important thing, when I’m taking part in sporting activity these days, I don’t generally have a sadistic, spitting, screaming Scotsman repeatedly kicking me up the arse calling me a “fat knacker”.  Thankfully.

A New Thing Every Day…

Every day is a learning curve, even for a fairly long-in-the-tooth, grumpy, opinionated bugger such as myself.  I’ve learned several things just today.

  • High-fiving a spider on the wall will lead to tragic consequences
  • Adding hot gravy to dog meat the dog won’t eat will mean that he will treat it like an entirely new meal – yes, he’s really that easily fooled
  • Kidnapping a cupboard will not yield a particularly large ransom – people will generally just buy a new one from IKEA
  • Peacocks can fuck off.

I don’t have anything specifically against peacocks.  They just demand mince pies from Fortnum & Masons instead of regular mass-produced supermarket mince pies, which I believe to be a pretentious stance.  OK, maybe if you own peacocks, you can afford to shop at Fortnum & Mason, but that’s not the point.  Demanding such luxuries in a recession just sends out the wrong message and, as such, they can fuck off.

As for the cupboard… you know who you are.  We still have your cupboard.  It has been a year.  If you want your cupboard returned to you unharmed, you WILL forward to us, via wire transfer, half a million Euros.  We can provide photographic evidence that it is doing OK.  You can even speak to it on the ‘phone… but time is running out.  You have been warned.