My Brain Hamster

Well that was fun.......

I've just come home from MRI number 4 which was a delight!

Not only do you get to go and lie in a tube for about 3/4 of an hour, but you're also asked to "keep still please," about 10 times (which for a fidget-pants is joy) and you also get the bonus of CLUNK CLUNK CLUNK BRRRRRRRR zzzzziiiip! CLANG - in no particular sequence or rhythm that you can follow or keep time with... and then there's the ecstasy of being injected with blue dye to light you up like a Christmas tree, and to finish it all off and put the bloody fairy on top of the glowing orb of twinkle, is the marvellous news that,
"We're pleased to announce that yes Ms Davies, there is something in there.... "

It was so much fun, but what truly made Clank-fest great was that one of my friends Carole came with me, which was so very sweet of her I could burst - thank you Carole xx - I took her for lunch to show my appreciation of something which can't fully be expressed with an Arboath Smokie, but she liked it and that's the main thing....joy

So, now here I am now at home feeling tired and a bit frazzled, but in no way unhappy with my news....I'm delighted to report that contrary to medical science and former projected illness that I don't have MS.
Ha! Oh if only that were the case....pah....of course I have it, but, I also now know the face of my oppressor, this my friends is what my MS looks like......(yours of course will look different, but ultimately it's gonna be a beastie)

This is the shape of my MS.
This is "Ms Marjolie" my Brain Hamster on her Wheel of Death.........

"squeak squeak squeak....weeeeeeeeeeee!" 
*in an almost silent but deafening sort of way*

Tomorrow I will call some exterminators in- Rentokil might be helpful here *gets out the yellow-pages and thumbs through* Tell you what, I'll be a monkeys uncle if I can't get this little blighter eliminated before it uses my ear as a shit-box.

Heheh....

And that, my friends, is just the way I roll. MS Scans are nothing compared to the ferocious tenacity of Ms Marjolie the Brain Hamster.......another day another turn of the rusty wheel...... x

Further to "How are you?" the end of questioning begins

Follow up to my last post "How are you?"

Excerpt of conversation starters from Monday:

(Q: Questionee. A: My answer.)


Q: "Hi, how are you?" (asked while not looking at me)
A: "YES, and then what?"
Q: "...What?"
A: "Yes, and what comes next...?"
Q: "....Um, err....how are you feeling I suppose?"

(meh, marginally better but still not meaningful, nor correct- for " I suppose " see "I don't actually give a shit about you or how you're 'feeling' " My answer -

A: "Through a series of nerve-endings which send electrical impulses to my brain."

*questionee immediately shuts the fuck up.*

"How are you?" I think will not be asked again anytime soon.
But, I won't bank on it.

"How are you?"

So....What say you......?

If you replied "Fine."  Naughty naughty and uh-uh... *inserts noise of getting answer wrong on family fortunes.*

You're not fine are you?
No, that's exactly what I thought. Except I didn't think, I just asked. But I had to ask, just like everyone does. Its the accepted standard greeting which means little; one which I shirk away from asking, and, answering as much as possible.

My point is: Just exactly how do you reply to the social construct "How are you?"  Its such a loaded question- but here we go, ready aim, fire.......

Tomorrow is Monday morning and Monday (for me) from start to finish, begins with this social construct of formality with little thought to the question - it's not a bad thing, but it's not  particularly helpful either. A well informed person, and one who you see regularly, to me, does not ask this question.

I will be asked this approximately 6 times before lunchtime tomorrow. After lunch, perhaps 3 or 4. After 10 times I might start shrieking and/or 'go postal' A snippet of humanity is shown and deftly slashed off as soon as the question has finished it's journey to your ear.

"Hi! How are you?"

(No, no no...please rethink that and ask something else. Anything else.)

Here are the options open to me, I will only choose one:

1. "Fine" (Bullshit.)
2. "Yes, how are you?" (Avoidance, redirection of vapid question.)
3. "Fucked to pieces, hunchbacked and cadaverous." (What I actually want to say, but cannot.)

So, how do you answer this?.... to your boss, to people you work with, people you have a meeting with, from DLA adviser to the person who scans your barcodes at the checkout. I've probably pointed something out which means little that we all respond to automatically, and that's my point, it's a auto-response, just like an 'out of office' message. We don't think this through.

There is nothing behind this question- it's an empty gesture, I want to ask you though - "How are you feeling today?" followed by a cuddle-question such as, "I'm making a cup of tea, would you like one?" with additional "there will be biscuits" thrown in for good measure :)

I just wished people would think a little differently on this........

By the way, my response....."I'm fucked to pieces, hunchbacked and cadaverous, my bones feel as though they might pierce my wet paper-bag-skin as soon as my body touches my soft billowing duvet, my knees are swollen like water-filled balloons and I  feel dead inside, cold and shriveled, suspended inside a cocoon of ruined self. And you?"

And that's how I will respond to this stupid fucking question.

If you are struggling to think of another way of showing empathy and genuine interest in the well being of another here are some alternative questions to start you off.

"Greetings I had some fucked up dream last night (ate too much cheese), what did you dream of?"
"How about that cup of tea? I'd offer you Gin but the sun's not over the yardarm yet."
" Ding dong lovely, you look great today, where did you get that?"

or, for some equally confusing questions (best if you ask the instant you see someone who will ask you that question, you will need to be quick):

"What disease did ham have to need to be cured?"
"Leonard Nimoy, Leonard Chohen, who would win in a fight?"
"If electricity comes from electrons, does morality come from morons?"

That should shake the tree a bit. And by God I'll be ready for anything, bring on the stupid.

URL: http://able2know.org/topic/123061-1

URL: http://able2know.org/topic/123061-1

Remote connections

Seems I've got a remote connection to everything which is happening around me.
Is this my life? It seems to be one that I look at  through a body which feels belongs to someone else and eyes that periodically rose-tint the world, or turn it grey depending on my mood.In summary: Tis hideous being in the throws of depression.
We all get it from time to time, (someone else has described his feelings of trying to choose a knife to suit his purpose) how awful MS and depression are- like a lynch mob on a witch hunt.... I'm not wallowing in it or running from it anymore, just accepting this as a monkey on my back (little bastard) who wants to pin me down and cut off my connection to all that is real, helps massively.

What I would like to do:
Undergo medical research to isolate the genes responsible, do I want to pick up the mantle of studying microbiology again?  Perhaps. But for a different reason to the one I initially undertook ('to understand') now it would be for less academic reasons and more in the way of
" I want to nail this disease." and "I want to help others even if I cannot help myself."
I need to think on this more.

What is happening:
The monkey is hanging on.
I've been promoted in my job which I cannot fully connect to, even remotely.
I am lost in the sea of mindless chatter and the age-old question which awaits me when I go in to work hovering above me like the sword of Damocles:
"How are you!?"

Things I need to think about:
How to answer that question.
What I plan to do with my half-life.
How to rekindle lost love (it's too long a story- but relationship-wise, all is not rosy)

Today I'm going to find my Christmas baubles and festive lights and deck my halls with Buddy Holly, it's not a bad thing to do when you're remote connection has failed...I'll even sing Christmas Carols at the top of my voice and wear my mittens to do everything from the washing up to typing using my beloved Remmington- am I going mad? Remote connection failing.....

Me thinks its time to wear the tin foil hat and contact my people on Mars to come get me.
"There's no place like home...." *clicks ruby heels together*

You say Shit I say Shite

My surname is Davies. Davies with an ‘E’


(Please try and remember this.)

Yonks and yonks ago,  through uni I subscribed to a US based medical trial thingie, for information aimed at people with disabilities, which gave you latest cutting- edged-scientific-updates in digital format.

It had the tantalising promise of genetic sequencing information, in depth neuroscientific evaluations of current treatments and their effect on motor function at my fingertips, as well as 3d mapping of MRI scans and the opportunity to speak with real people who study the field of neuroscience, microbiology (right up my strasse) and microbiology (perfection.) to have contact with experts in MS through their scientific network was a joyus moment and this my friends, was the future of understanding, collaboration, one-to-one-ness with our fellow MS'ers AND experts of the highest standing in cellular biology at the immunological level! Experts in technology, contactable professionals?
Wow!
Amazing, I thought, I might actually finally get to say fabulous words like 'endoplasmic reticulum' and 'histocompatibility complex' without being stared at blankly.
(Yeah that's right baby I studied microbiology, I know stuff.)

So I'd be signed up for clinical trials, and be free of MS asap (Hooray)

I think back to the first phone call I received asking me if I was happy to be placed on their now shortened waiting list as an MS RRMS 'guinea pig' - "holy crapola!" I thought...No kids, unmarried, skint, dangerously opportunistic, "what's not to love?" A perfect golden opportunity for the right person. Ch-Ching!

The end of phone call for my medical sign up went something like this
" Just need to check the form now- So that's MISS Marjolie Davey?"
"Yes and No," I say, "That's Ms Davies, Davies with an 'E' "
"With an 'E'?"
"Yes With an 'E', and Ms not Miss."
"Ms? Like the letters MS."
"Yes"
"So that's Ms with an 'E' ?"
"YES. Davies- with an 'E'"
"Ok, no problem, congratulations you're now on our list, we have your name, address, phone number and email. We'll let you know when to clinical trial begins with two weeks notice to book flights and that sort of thing. Get back in touch with our experts if you have any problems."
"Ok, great thanks so much."
"You're welcome!" (and possibly) “Have a nice day!” (doubtful, been watching too many films..)

2 weeks later no phone call… 3 weeks, 4 weeks, 3 months, 6 months, 9 months,  nothing.

Then, just a week ago I received more junk mail as usual which I didn’t take straight to the bin, but instead opened (just for the hell of it- I was feeling frivolous) it was a NOTICE OF CANCELLATION (in bold, red type) which told me why these superior scientific microbiologically talented geniuses hadn’t been in touch with me, and why I’d never received an scrap of news from them.

The letter had been addressed to a MS Mavis Withanee

So then........ What’s my name again?

I'd just like to say:
Experts of the highest standing in cellular biology at the immunological level in the fields of MS with advanced technology, and contactable professionals?
What a load complete and UTTER Shit.
That's shit. (With an 'E' if you like)

Massive Squirrels

The Massive Squirrels are at it again today whizzing round and round inside my head on their treadmill of doom.

(For those in the know, 'Massive Squirrels' are a symptom of MS. Which is often (and mistakenly) called "Multiple Sclerosis".
('Sclerosis' means Scars, and 'Multiple' means, as you know, Many.) 
So, in conclusion: There are many scars where should be none, and there are Massive Squirrels where there should be soft spongy Marshmallow pockets of superior genius. And we are fucked because of this, but there is hope for us, and we March Sporadically onwards towards our final destination, we're all going to the same place folks- and lucky for us we'll get the best tables with a great view before you've even booked your room at the Grat Hotel in the Sky- yeah yeah sometimes its not great (akin to being on a giant rollercoaster- there are big dips, twisty bends, sickeningly sharp inclines and plunging downward spirals.) It can make you sick, but then, for me, that's where the fun begins.... When I feel sick I climb back on just for the hell of it - I also like to take a pocket-full of nuts and bolts with me and hand them to the person sitting in front, just before we begin the next slalom along with the line
"Hey man, these just came out of your seat."
*cackle*

Massive Squirrels crack nuts inside your skull, leave the shells everywhere, and, just because they can, they thoughtfully leave a nugget of shit in your eye socket just as a reminder of their furry annoyance which doth run amok in the House of Marjolie. Why I oughta! *shakes fist*

Anyway, also presiding over today's proceedings for me are - the Magnanimous Shakespeareans (with many a blah blah BLAH all-the-live-long day), the Misanthropic Sausages (greedy fat bastards who want to eat all the time), and the ever present Megalithic Scandinavians, (who rampantly pillage your nerves and give you the infamous "spazz hands." before clocking you one in the crown jewels.)

("Spazz hand" occurs in my left only which is a relief for a righty pseudo artist. The right hand would strangle the left if it were not also controlled by Misguided Stormtroopers who fire random shots at nothing in particular in a fruitless bid to foil the rebellion.)

For non MS'ers or (' the jaundiced healthies' as I like to call them- maybe more on that later..) These foibles are formed by defunct Myelin Sheaths which are supposed to ward off MS invaders (i.e My Self) ....fuck a duck! So it all starts and ends with MS?
You bet your sweet ass it does.
Welcome to the world of the unfavourable, the pithy and the fearless. MS for us rules the waves in the sea of normality, much like our beloved Queen does (or at least tries to). Freddie Mercury, for the record is the only Queen that rocks my world, sorry Lizzie s'nuffin' personal 'cept Freddie Rocks it and you do diddly-squat.

So, this isn't a blog full of doom and gloom, quite the polar opposite in fact, because no matter how shit you think life is, it can't be all that bad- I'm here wittering away to myself in the vain hope that one or two people will be compelled to  say "Fuck this Shit" and hopefully  ( and with slighty more articulation)

"This bollockery does not define me.One simply won't have it."

No, one will not, what does define me though are the brain hamsters and the massive squirrels who use my frontal lobe as a nesting box.
Welcome to my world, please wipe your feet on the way in, i'll stick the kettle on, you take your clothes off and we'll just skip all the formalities 'k?

Oh if only life were that simple.