Are you drunk?

Yes, I have had people ask me this.  The reason – I slur my words.  Especially in the afternoon, or after talking for a while.  This is where my being so “thspecial” comes from.  I remember when I was first diagnosed, my family & I made up a little rhyme to ‘test’ my talking.  It went like this, “Let’s look at Doctor Judy eating boerewors & chocolate on Wednesdays” – these were a lot of the sounds I battled with & often struggled to form.  Plus Doctor Judy is my fabulous neurologist, to whom I owe my life.  I had to throw her in as a daily reminder!  I used to have to repeat this countless times every day & we would score it – 10 being absolutely perfect (in other words I sounded like any normal, healthy person), & 1 being shocking whereby even mum & Kate (my sister) couldn’t understand me.

My main issues have been with my facial muscles & the associated actions – i.e. swallowing, talking, smiling, closing my eyes & so on.  This is always how I can judge when I am going down & this is how my symptoms first presented themselves in 2003.  Here are a few more things my illness throws in my direction every now & again – often just to remind me it is still there & I can’t overexert myself.

Do not even try mouthwash!  Gargling is impossible.  When I tried to use it, I used to have to put a tiny bit in my mouth & shake my head around – had some good head banging moments, but half the time the mouthwash spilt out of my mouth as well.  Not attractive.

Chewing gum is another absolute no-no.  It tires out your mouth, which causes further slurring, drooling & trouble chewing food.  And it happens so quickly!  The same can be said for tough food (i.e. steak etc) so I rather stick to soft, easy to chew foods – even today.

The number of times I have choked on lettuce or sweetcorn is ridiculous.  And choking when you have MG is not fun.  Because these muscles don’t work you cannot cough properly, you cannot swallow properly, & you cannot even bring this up.  Lettuce was my enemy for many years.  I have turned blue, had the Heimlich performed on me & ended up being rushed to the ER because of this evil food.  The food just sits in your throat which prevents you from breathing properly & this progresses into pure panic.  So as you were taught when you were little – chew your food properly.  I still take forever to eat as I am so nervous of an attack to happen again – in fact I am often still on my first course when my family are dishing up seconds.

It feels like my teeth or the shape of my mouth has changed.  I often end up gnawing on the inside of my cheek, my tongue, or nothing at all.  And often food will just fall right back out again.  It has changed the way I chew completely, & sometimes funny little snorts/hiccups/noises just appear while I am eating, which gives me the giggles & makes it even more difficult to finish my food.  I am sorry.  My mother did teach me manners, my MG just sometimes takes over.

Birthdays are a big thing to me.  I mean, they are a HUGE thing to me.  I love going all out – for others & for my own.  We decorate the desk of the birthday person at work with streamers, a banner & balloons.  But I cannot blow up a balloon.  I can puff up my cheeks somewhat but nothing goes into the balloon.  I am not sure if perhaps I have a slow leak in my cheek that I don’t know about, but that air does not go into the balloon.  I just end up making a funny noise & handing over a limp, probably soggy balloon.  So rather keep me away – it is not pleasant. 

The same can be said for me trying to whistle – what a joke!  I cannot even purse my lips, let alone make some kind of sound come out of them.  Maybe you will hear a slight rushing of wind if you listen closely, & if I focus very hard.  I can’t even blow out candles, although all the little nieces & nephews love this as they get to help me.

I have developed little quirks to help cope on a daily basis.  I clear my throat often as this helps my saliva to go down if it is just sitting there, although I do choke on it from time to time.  As I said before, at my worst I had to mop up my spit as it was not going anywhere!  So it always, ahem, sounds like I have something very, ahem, important to say – but this is not always the case.  Plus it can be easier to write out what I am feeling rather than talking.  At work I prefer to communicate over email rather than picking up the phone to call someone.  Talking is an effort – let me stress that.  It feels like my tongue is numb & too big for my mouth & every. single. word. is. an. effort.  It’s like trying to talk with a massive grape in your mouth & still pronounce your words correctly.  If you can hear my talking has gone funny, it probably means I am battling to get the words out.

Another quirk is my trying to swallow, or get the food down.  I have learnt to tip my head to the left & toss slightly.  For some reason this makes swallowing easier & helps the food to go down safely – without causing a scene.  If there is food stuck between my cheeks & teeth, I have to use my hand to push on the outside of my cheek so the food can be swallowed.  All in all it makes eating an absolute experience.  I hate it when people watch me eat.  I would rather sit there & starve than have someone watching me eat.  It makes me very self-conscious & I can only imagine what is going through their mind watching this loopy child trying to get her food down – looks like some kind of new age dance craze that hasn’t quite caught on.

Building up breath is not easy (see above about my attempts to blow up a balloon), & so trying to blow my nose is tricky.  I can’t clear my nostrils properly & often the air escapes through that invisible vent in my cheek. This can lead to worse infections & a very stuffy nose!  Sometimes when I am tired I battle to yawn – that breath escapes as well & I just end up pulling a face that makes me look & feel like a complete banana.

One day mum spoilt me & took me to go have my make-up professionally done.  Everything was amazing – up until they applied the lipstick, & told me, “Just go mmmmm with your lips.”  Well, mum & I looked at one another & burst out laughing.  I cannot lick my lips, smush them together when applying lipstick, or even catch any food that is sitting in the corner of my lips.  My smile isn’t strong either – the corners of my mouth don’t lift up properly & people often think I am snarling at them.  This is not the case.  Unless you have made me very angry, it is probably me trying to smile at you!  So please forgive me.

Ladies & gentlemen I am a drooler.  Every morning I wake up with a wet pillow.  My mouth doesn’t close properly & this means it just slips out during the night.  It isn’t attractive.  It does however make us laugh as it is almost like I am having a second bath during the night.  Have to quickly wipe my face before getting up & jump in the shower before husband can see me!

Another thing that happens during the night is I cannot close my eyes properly.  This actually happens the whole time, but you mainly see it at night.  Husband has often said he has woken up to see the whites of my eyes shining at him.  The lids just don’t close.  I can try as hard as I want but my eyes just don’t close!  I have to put eye drops in continually so my eyes don’t dry out.  I don’t notice it, but I do apologise to others who have to get the freaky eye treatment.

I have run out of breath on countless occasions.  From laughing too hard, to having a good cry, to finishing a sentence, to climbing a flight of stairs.  I may be unfit, but it is not only that.  Any exertion on any of my muscles will have an effect on my other muscles.  My heart will also beat rapidly after any exertion, & I sometimes start sweating for no apparent cause.  Sunlight & other bright light affect me negatively, & sometimes exacerbate my symptoms.  I cannot go anywhere without my sunglasses, or else I end up like a vampire burrowed away & hiding from the evilness that is the sun.  I squint, pull funny faces & my eyes water like mad.  Maybe I am actually a bit of a vampire – this would explain why I am so pale as well….  Hmmm….

Drinking – it is not always easy, & I often end up seeing double.  And no, I am not even talking about the alcoholic type.  The easiest liquid to get down is a milky consistency, like a milkshake.  But don’t expect me to use a straw as I cannot suck – that shake will stay in the glass & more often than not I will end up drooling down the glass in an effort to get something up!  So I will pick up the big milkshake glass & drink directly from it.  It is not ladylike, but I am sure you would prefer to see me doing that than drooling back down my straw?  Hot liquids make me talk ‘funny’ almost as soon as I have one, & I have even had liquids come out of my nose whilst trying to drink.  Cool party trick or more freakiness?! 

Thank you for sharing my laughs with me – I am sure there are plenty more that you may have experienced yourself, or have been through with me.  Thank you for making me laugh at myself & not get upset when things don’t work out the way they should.  Thank you for keeping me positive & strong through all of this - & helping me to see the light at the end of the tunnel.  I will not give up.  I will get better & all of these have made a stronger person & helped me to become the person I am today.

But when I do cry, thank you for understanding.  Thank you for holding my hand, for trying to make sense of what I am saying & not getting impatient, for helping me around the house, for pulling me up off wherever I was stuck & for trying to understand what I am going through.  Thank you for not telling me to “pull myself together” or to “stop putting this on”.  I don’t enjoy being sick, & wouldn't wish this onto anybody.

Thank you for your support.  Family, friends, doctors, colleagues, & randoms – all of you are special.  Those little messages or pictures you send through mean the world to me.  Thank you for never pushing me, & for understanding when I say I cannot cope.  Thank you for organising things to make it easier for me.  Thank you for loving me the way I am – “thspecial” talking & all.

Thank you.  From the bottom of my butt.  Because that is bigger than my heart!