Rss Feed
Tweeter button
Facebook button
Technorati button
Delicious button
Digg button
Flickr button
Stumbleupon button

Crumbs on the keyboard and DON'T YOU TOUCH THAT!

Posted by on Aug 7, 2009 in Uncategorized | 18 comments

Kai and I were supposed to be at ‘Krafty Kidz’ this morning (aliteration and creative spelling? You just know it was going to be all kinds of fun!) eating getting covered in paint and causing plenty of nice middle-class organised mayham. We are, however, not.

An old friend decided to pop round for a visit instead. But not a nice old friend who arrives with flowers and home-made biscuits. No. An old friend with teeth.

Yes folks, my very best friend the pain fairy has been to visit.

Kai has thankfully decided today is a two nap day (thus doubling my amount of sitting-on-ass time) so I do at least have some time to sit and put my feet up this morning and try and distract myself from the army of tiny microscopic beavers who seem to be gnawing at my joints, crapping in the resulting orifice and then lighting that crap on fire.

And because misery loves company, and because I know you’re all dying to get to know me better I thought I would sit and regale you with the story behind why there are a million tiny Yaks stampeeding all over my bones. And crapping on them. And lighting that crap on fire. See? I’m getting better with the metaphors! (And you just KNOW who that last one was for…)

I have Fibromyalgia.

Which is…well… actually they don’t actually know what it is too be honest. It’s kind of just a name for a collection of pretty horrible unexplained symptoms. Pain being the most obvious one. Delightfully agonising, unrelenting, ten billion woodpeckers all going to town on my deep muscle tissue pain (ok, I’ll stop with the metaphors now). And fatigue, lots of that. Plus the odd bit of incapacitating muscle stiffness, fog-like disruptions to my mental systems, and pins-and-needles alternating with completely numb limbs.

It’s quite a party I can tell you.

As I said we don’t really know why. The current theory is that it’s a neurological problem, with some schools of thought throwing in an auto-immune element or chemical imbalance. It’s probably a bit of a mixture of all three but the neurological explanation has always held the most water for me.

I reckon it’s a wiring problem. And the little man sitting at the control console in my brain likes to drink. And smoke dope. Plus I think he has a bit of a Kai-like tendency to find button pushing irresistible. It probably goes something like this…

Tiny Man: “Oh look there’s a lovely shiny button!”

Me: “Don’t you touch that”.

Tiny Man: “Understood. Nope. Definitely not touching. Umm…just out of interest, what does it do?”

Me: “That’s the button you’re supposed to press when I burn myself with the iron or trap my finger in the car door or push a giant watermelon sized baby out of my vagina. It’s the PAIN button tiny man and you must not push it unless you have a REALLY good reason”.

Tiny Man: “Right. Gotcha. No pressing of the button unless pain is justified. But… it’s just so shiny!”

Me:”Oi! I can see your finger on it!”

Tiny Man: “No no my finger’s just RESTING there, don’t worry. I won’t touch it honestly, I won’t…

PAIN PAIN PAIN PAIN PAIN

Me: “ARggghhH!HH!”

Tiny Man: “Ooops”

Me: “TURN IT OFF! TURN IT OFF GOD DAMN YOU!!!”

Tiny Man: “Umm… about that. I don’t seem to be able to. You see my mate popped over before with these DELICIOUS brownies and some beer and I may have inadvertently got some on this here brain console and now it won’t switch off. Sorry”.

Me: “ARggghhH!HH!”

Tiny Man: “Don’t worry! I’m sure it will right itself in a few hours, or days, or maybe weeks… it’s no big deal!”

Me: “BASTARD!!!”

I hate that tiny man.

Now I should point out, I’m pretty used to this by now. It’s been going on since I was very small, managing it has become second nature and I’m better now then I have EVER been (and actually have been since I became pregnant… hmm… hormonal element maybe? Partly the reason I’m so reluctant to give up breastfeeding yet! I reckon that glorious prolactin is the only thing keeping me going!). It’s not so bad these days, I’d even use the word ‘remission’. It just enjoys popping by ever so often to bite me on the ass when I’m not looking and remind me it’s still there.

It’s not always been so managable though. I spent most of my teens either on crutches or hobling round like a granny with a walking stick (did wonders for my high-school cool factor I can tell you), and most of my early twenties in a wheelchair, confined to bed or sofa for most of the day. To say it hasn’t been easy is an understatement. Not helped by the fact that a small proportion of the medical community still think it’s an entirely imaginary disease. Yep, that’s right, they think I’m a mad person who makes up the fact that I’m in pain to get attention. Isn’t that just what you want to hear when your 14 and think you might be dying because the pain is so bad? Alternatively they just thought I was just a HUGE drama queen who excessively exaggerated what are normal every-day aches and fatigue. Nice huh?

I can assure you that this is not the case. The pain is very real. I’m not an attention-seeking mad person. I am not over-reacting or a big wuss. The fact that I managed to give birth on two paracetamol and wiff of gas and air I hope proves that, as does the fact that I managed to keep smiling through the many tests and painful procedures they subjected me to as a child to prove whether or not I was making it all up.

But it is, I’ll admit, a bit of a mystery.

In any case, it doesn’t matter. I don’t really care who believes me anymore. I’ve got a handle on it and get to live a relatively normal life so I feel lucky. Other people with the same illness don’t do quite so well.

It’s been a tough journey but my goodness am I stronger for it. And that has to be a good thing.

Anyway, I hear the sounds of a little man stirring (no, not THAT little man – the nice one that will greet me with cuddles and kisses).

Catch you laters.

Related posts:

  • http://iknowineedtostoptalking.blogspot.com Kathryn

    It’s not that I like the thought of you being in pain, but that is easily my favourite blog post so far. I’ll be honest, it might have something to do with you incorporating yaks …! Wonderous xx

    [Reply]

  • http://allgrownup06.blogspot.com all grown up

    oh gosh this sounds terrible, you’re so brave. And as above, I really enjoyed reading about the little man in your head (thinking Homer Simpson-esque), although not in a malicious way…..I used to have back problems(though obv not in the same league) with disappeared during pregnancy. Strange eh?

    [Reply]

  • http://bringingupcharlie.blogspot.com/ Tim Atkinson

    Woah, I can feel your pain. Well, not *your* pain, obviously. But… Having psoriatic arthritis I do feel for you (if that’s the right way of putting it)… We sufferers should stick together!

    [Reply]

    porridgebrain Reply:

    That’s more than ok… that’s LOVELY! Thank you so much! :D x

    [Reply]

    porridgebrain Reply:

    Complain away!! Fingernails hurt! Especially when they split really low down… ow!

    And thanks… it’s lovely to meet you!

    [Reply]

  • http://www.gotyourhandsfull.com Linda

    Hi – just followed the link from BMB and wanted to say how your beautiful writing has hooked me in. I think that’s all you are going to have to do to keep people coming back for more. Will look forward to following, so sorry to read about your pain and I hope things can get easier for you. Your ‘crumbs on the keyboard’ reminded me of when I made some tentative steps into blogging many moons ago – then sort of left it, I called my blog ‘Weetabix on my portfolio’ because of the chaos surrounding trying to make a living in (I think a different sort of) writing. All the very best to you – oh and I am in Staffordshire too. Lovely to ‘meet’ you.

    [Reply]

  • http://notdrowning.wordpress.com Not Drowning Mother

    Wowee, and there I was bitchin’ about some slightly knobbled joints in my right hand.

    I love the idea of the little man and the shiny button – even if I hate what that little man does to you.

    Just tell that guy that if he really must press that button, not to do it when you’re blogging, okay? Tell him we’re waiting to read more posts.

    [Reply]

  • http://insomniacmummy.blogspot.com Insomniac Mummy

    Just found you through the BMB Twitter post :) .

    Was wondering if you had read ‘The Fybromyalgia Healing Diet’. It was written by an ex-colleague of mines wife.

    Just added you oin Twitter.
    :)

    [Reply]

    porridgebrain Reply:

    I LOVE this!!!

    And I agree – this would never happen with a woman at the helm…

    Can you imagine how different it would all be? Dorothy would have got home in double-quick time, with clear directions, a thermos of coffee for the journey and instructions to “call to let me know you’re home safe”.

    There would be an awful lot more involuntary giggles and Harry Met Sally moments eating cake in fancy restaurants and none of this stupid boring pain.

    Actually I’m beginning to think a change of staff might be in order. Maybe that’s where I’ve been going wrong?

    Thanks for your comment x

    [Reply]

  • http://insomniacmummy.blogspot.com Insomniac Mummy

    Gah, meant to leave link…….baby brain!!

    http://www.sheldonpress.co.uk/books/9781847090621.html

    [Reply]

  • http://potty-diaries.blogspot.com/ Potty Mummy

    Hi there, great post, and just wanted to let you know I’ve put you up as British Blogging Mummy of the Week – hope that’s OK. (Not sure how that fits with the Blogging being like high school post but I promise this is not because you said you liked my shoes….)

    [Reply]

  • http://mostleast.com ella

    Hello, I’m here from Potty Mummy. I’m so sorry you have to deal with so much pain. It must be especially hard when you have to look after your little boy too.

    I’ve enjoyed reading your blog!

    [Reply]

  • http://www.mumsrock.com MumsRock

    Found you thanks to Potty Mummy. And enjoyed reading this (yes clearly NOT the pain bit).

    Actually I think you may have hit on a theory that we need to get out to a wider audience.

    The theory of the… ‘tiny man in charge’.

    Historical:
    We know this has been wrongly attributed to Frank L.Baum as clearly the notion of the Wizard of Oz (tiny man behind curtain) was based on ‘tiny man in charge’.

    Political:
    In later years I think it’s fair to say it became a political model for many of smallish male politician (Jimmy Carter and Richard Nixon were both under six feet).

    In Fairness:
    And I don’t think I can be accused of smallotry – these men are small…but note their fingers are big enough for even the naughtiest of buttons.

    And finally…
    Yes. Finally – we should ponder…why is it that these tiny men can find the bad buttons but not the good ones? The ones that cause an involuntary giggle (…and other things too blush-making for these virtual walls). Wouldn’t happen if you had a tiny woman in charge. (she’s be baking, blogging and more importantly feeling your pain).
    xx

    [Reply]

  • http://www.hotcrossmum.blogspot.com Hot Cross Mum

    Hi. I followed the Potty Mummy BMB Of the Week Link – many congrats on being chosen and well deserved. You are clearly a very strong person. I am not. But after reading your post, will stop being utterly pathetic and will not complain any more about my slightly sore little fingernail.

    [Reply]

  • http://www.leftofthepleiades.blogspot.com Ruth Moss

    Oh when you said:

    “aliteration and creative spelling? You just know it was going to be all kinds of fun!”

    I really did lol.

    I also missed the /sarcasm tag. I trust you meant for there to be one.

    [Reply]

  • Pingback: Microscopic beavers, gnawing at my joints and crapping in the orifice « arthriticquaker

  • http://lifeslightlyused.wordpress.com/ april

    Wow hon – certainly puts my whole mental stuff into perspective – trying to manage that plus what I’m equating to withdrawl from anti-depressants (sounds VERY similar) but that you know will end, at some point – *hugs* so many -Kai has a very brave Mum in you.
    .-= april´s last blog ..Conversations with Bub1. =-.

    [Reply]

  • porridgebrain

    It was in celebration of Mr Jamie’s magnificant triumph. If that doesn’t deserve some Yakage then I don’t know what does… x

    [Reply]

  • porridgebrain

    No No No Osteaoarthritis is completely sucky too – which is why I was very sad to read about your diagnosis :-( Don’t worry though, we can bitch and moan about our old lady diseases together and attempt to become the first people to cure debilitating joint problems with silliness and copious amounts of junk food and wine.

    Just wondering – do you lend Mr Justice and his chicken dancing out? Cause that is JUST what I need on a flare-up day.

    [Reply]