Wednesday 23 June 2010

Turn Away Now. "Woe Is Me" Post Ahead.


(Deep breath).

That feels a wee bit better.

& @&amp ;% $# $@ #! #^ $# $# (*&;^ %$@( !!!!

Sorry it appears I still had some more frustration left. 

I apologise in advance if this post is interrupted by random swearing or screams of anguish.

It's one of 'those' weeks.  Usually I can find my happy place, but not today.  I've tried, I have.  I've done the deep breathing.  I've tried my yoga.  I've had my coffee and put on my soothing oils.  And still my bad attitude persists.

Today is one of those days where I just want to sit in a corner and sob my heart out.

Today is one of the days I want to slap myself for being a pathetic woman.

"Oh my God, what has happened?", you ask.  And to be honest I don't know.  It's just crap.  Yes Bob is messing with me, but that's nothing new.  Really nothing extraordinary has happened, (well I guess there have been a few things but nothing that I really want to discuss on my blog, no offence peeps but some things need to stay off the WWW).  But in reality crappiness is something that happens periodically in life and most times I can suck it up, do what needs to be done and move on.  But this week......ugh.  This week it's beyond me.

I think sometimes everything just builds up and up and up and one little innocuous thing is all it takes to send you over the emotional edge.

I looked down in the shower today and saw that yet again, there was a wookie residing in my drain.  That was it.  Stupid I know.  I looked at that moist and manky pile of hair, soap suds and epithelial rejects covering the drain and my heart sank.  It's not the first time this has happened.  I lose so much hair each day I am surprised that I'm not bald.  Every time I shower it's the same story.  Every time I brush my hair I end up with my own personal shag pile rug at my feet.  But today I just looked at it and thought, "I am so over this.  Not even my hair is safe from the effects of Bob".

I know it' stupid to be so upset over such a little thing.  I want to slap myself.  In fact I may just go do that.  I know there are many worse things going on in the world, but it was that finally straw.  Can't I have just one part of my body free of the effects of this stupid disorder.


(Sorry told you it was likely to pop up again).

It comes in the long line of stupid stuff you lose when you get sick.  Stuff that shouldn't matter but still does.  It matters because it's little and stupid and shouldn't ever be an issue.  It sits in there with all the other things that women my age don't normally have to deal with or consider.  It sits in there with all the other choices and independence that have been stripped away one by one.

For example, I can't stand anything tight on my stomach.  I have become elastic granny girl.  A belt, normal waist band on a pair of jeans, stockings, all things that are now pretty much not an option any longer.  High heels really are out too.  I have balance problems one a flat floor in bare feet, so 4 inchs and tip toes are not really my friend.  In many respects my Dorothy Shoes were an "in your face" to Bob.  I am determined to wear them out at least once.  I also know it's probably stupid I'm just choosing to ignore that fact for the moment.  Add in that alcohol is a no no, standing in line is complex, that I am developing adult acne (I'm 30 freaking 7), that.........well I could go on and on and I'd want to slap myself again and the way I bruise I'll have a face like an aubergine and that's not a good look.  Today petty is winning.

Sleep is eluding me this week.  Last night I think I managed a max of 2 hrs straight. There was half an hour here, and half an hour there, but that's about it.  Unfortunately, that can't sustain you physically or emotionally for long.  I know I'll crash at some point and do the whole coma sleep routine.  I only hope it is sooner rather than later.

Last night my feet decided to balloon up.  Not unusual really, but this time they were up on the coffee table and still ballooning.  In fact they were heading towards blimp territory, so much so that Mr Grumpy said "Wow you're having a swelling day. I've never seen them like that".  And that's saying something as we are 4 years down the track now and little about my body should be surprising anyone.  Even the rug rats had to come over and have a look.  The youngest thought it'd be hilarious to write his name on my feet by pushing his finger.  Sexy yellow letters surrounded by lovely shades of lilac and crimson.  Even today they continue to tingle away and look puffy. 

Me and the Bearded Lady, Freak Show here I come.

(photo from here)

Today's game is nausea.  Unrelenting waves of heat and nausea.  Some days I wish I could just vomit and get it over and done with.  But no my body wont play that game today.  Mind you, the days I don't want to vomit are usually the days I'm bent over my porcelain lover all day long.  Even water is making me want to throw.  Add in the spinning head and it's fun fun fun.

I know my bp is particularly low today (and yesterday) as is my heart rate.  This seems to mess with my ability to cope dramatically.  Bp below 90 systolic equals hair trigger for the water works.  I'm sure there is some physiological link for this because it happens every time.  Mind you sometimes a big sobbing cry is just what I need.  It's like a valve to release the pressure that build and builds.  Once it's over I feel lighter, tired too, but lighter.  I say this as someone who hates to cry.  For me it has always been equated with weakness thanks to a whole lot of family baggage that would take 5 therapists and a century or six on the couch to resolve.  I don't judge others, just myself.  I have this stupid idea that I should be able to cope no matter what.  I'm working on that, but it does add another layer of stress to deal with on days like this.  Maybe is a galaxy far far away I can get past that one.

I know most of this is transitory.  Bob likes to spin the symptom wheel each day to see what he'll throw my way.  A moment of excitement each morning to see what he'll dish out.  One day nausea, the next day dizzy, the next day un-co, the next day............but today logic is beyond me.

I feel like a whinger.  I am a whinger.  I want to get back to that false veneer of happiness I can usually present so well.   I'm sure if I say I'm okay with my lot in life I will eventually come to accept it.  My CBT training says it'll work if I stick to it.  And most days I do.  Just not today.

Today I'm not going to fight it.  I'm just too tired.  Today I'm going to ride the wave.  As long as I find a way to tread water rather than drown I think I'll be okay.

In the words of Scarlet O'Hara, "Tomorrow is another day".  Can I request that it hurries the hell up.

Sorry for this woe is me moment.  We will resume normal programming next week.


I'm not asking for pity by the way.  I'm just venting.  I'll probably regret posting this tomorrow, but that's the way it goes.  Today I'm going to expose my petty, whinger, pathetic side, to the world.  Tomorrow I'll shake and slap myself.  I'll break out the can of "harden up princess", and go back to ops normal. 


  1. Sorry dudette. Bad days are pissers no matter what the reason. I'm happy you don't look like Telly Savalas despite the hair loss. And hopefully tomorrow you WILL feel better and more like stabbing the badness right in the heart in a giant eff you motion.

    I'm not sure this will have the desired effect but it always cheers me up for a while watching THIS. The main singig guy in white having spasms on the dance floor is my secret Indian retro boyfriend. :) But you're welcome to share.

    Feel better!

  2. Sorry you're having such a crappy time. Believe me, I can understand (lately has been particularly difficult). Sometimes, I'll forget to throw those drain clogging hair-balls away. During showers (or rather, me sitting in the tub with the shower running on me since 1 minute in I nearly fainted AGAIN) I put it on the side of the tub, but at times, I'll forget, and my poor mother who is at least twice as myopic as I am will see it, and start screaming because she's just SURE it's a mouse (and that's probably her most severe phobia). I guess the laughter I have after I am able to quell the panic that comes with her screams at first is well worth any tachycardia.

    So what if laughing makes me faint at times! There are many, many more horrible ways of inducing faints. :D

  3. sorry your feeling crappy at present michelle. hoping it will pass soon. glad you mentioned the hair thing. my carpet is like walking on a sea of hair, i didnt know it was related to bob, just thought it was an odd quirk of mine. snap with the spots, ive usually got one on the go. and although im sleeping, touch wood, at present, im not a good sleeper. from the age of four i would take a few hours to drift off, and always (even now) wake up three or four times in the night. im embracing this new sleep pattern right now.

    somedays seem like pot luck, like you say what symptoms is ready to hijack your body today, its not a pleasant way to live, yet weve got no choice. hugs from england. xxxx

  4. Shut the hell up and get back to your normal, funny, fighting self!!!

    Okay, now that that's said. I feel ya sista! I have ten thousand more "woe is me" days than you do. I think you're allowed to have them every now and then. I'm still trying to figure out how to deal with these crappy cards that I've been dealt, as I've only had them for a few months.

    I'm actually glad to see that you have bad days too and that I'm not ridiculous for having such a hard time with all of this. (because it's been VERY difficult)
    I hope tomorrow is a better day for you!

  5. Whoa, hard critics there. Hope you are feeling better. If it helps, go and book you and your fella to see Deb Conway. She's brilliant. I've seen her and Zygier twice now and both times were equally fantastic. The show will make you soar.

  6. You had me at your glittery red heels and your spelling of 'apologise.' ;)

    "crappiness is something that happens periodically in life"- so true. some days you can deal with the crap, and some days you can't. Consider this my wish that for today, you can deal with it a tiny bit better, or at the very least plan on a better tomorrow. ;) Ride the wave, lady.

    Elastic granny girls unite!!!

    P.S. Can I borrow your soothing oils?

  7. This morning I rode my three wheeler bike the one mile to the library to return my books. I was going to treat myself to coffee but getting off the bike causes great weakness so I went home. I wore my new cooling vest on the ride so the heat wouldn't knock me out. It was 10am. Then I went home and rested an hour. Then I colored my hair and took a bath (I cannot stand in the shower either). Now I'm resting again. If I have the energy, I'll do the dishes. My husband did a whirlwind road trip last week to WA DC, NY and VA. I, of course, could not go. My ailment is MS. I'm coming out of a relapse (I think) but the left leg will never be the same. Also having a pity party. I did it all right - the education, raising the kid right (and he is now a teen that seems hell-bent on being a delinquent)...and still got sucker punched. Guess what? Kicking and screaming doesn't help. But what else to do? Feeling ya, babe.

  8. sunburnt_earth25 June 2010 at 09:13

    Sorry to hear you're having a crappy week Michelle. They're no fun and unfortunately, venting and having a big sob are about the only things that seem to help get over that hump sometimes. (This is coming from another miss-just-suck-it-up with issues about crying and feeling 'weak'.) But you know, I reckon even Chopper would get a bit misty eyed if he was couldn't stand up in a pub and have a beer. Hope you're feeling better soon.

    PS: your fish are hypnotic.

  9. We all need a good cry and a good kick and scream tantrum every once in a while. You've definately earned it. I so hate the morning roulette game of "what's the symptome for today".So many of us can relate, thanks for sharing.

  10. Hi Michelle,

    First: I just read your comments here and I didn't know you had so many readers going through your same condition and other illnesses! It's nice to have that support system, but I must admit that they seem to have devoted their comments more to venting about their own problems than supporting you about yours. Some didn't seem to be about you or this post at all.

    You have such a cornucopia of symptoms (as if you didn't know)! I admit that when I read "Woe is me" I expected that one particular symptom was dragging you down -- but there are so many more! That's horrible. Sorry Michelle. I didn't know you had balance problems too! Do you find those really unnerving? Good for you for sticking it to Bob by wearing your red shoes... If you can't wear them right now, why don't you use the heels to pop balloons? You can draw pictures of Bob on the balloons. Sweet revenge!

    On a serious note, I didn't at all think that you were looking for pity. You were just stating the facts and I didn't think you were colouring the story at all. You're suffering and I think it's important to vent. Also, it was an engaging read. You give such vivid details about the day-to-day struggles.

    I imagine your illness can be boring and isolating. What do you do to comfort yourself and pass the time?

  11. Two steps forward, one step back, right? Not to make it about me (you know how I roll) but it reminds me of all that bullshit they tell cancer patients about how important it is to always stay positive. "Kick cancer's ass" and all that jazz. Well, you can fight as hard as you can, but that doesn't mean it won't occasionally kick back. It's ok to retreat, regroup, then kick back once Bob has a false sense of security. I'll help you out and apply another coat of glitter while you take a disco nap.

  12. Michelle, THANK YOU for this post.
    It is nice to have some metric of "normal", even if it is just "normal among us."

    (I'll be 37 in 4 months, have dysautonomia, and cried over the amount of hair in my shower drain this morning too!)

  13. Thanks to everyone for their support. I would do the individual reply thing but the blargh is still in place so I'm going to do one big


    Oh and I highly recommend The Vegetable Assassins cure for what ails you. Oh Bollywood you are my saviour. PS check out "Girly Man" over on the side, it's the Bollywood version of Thriller.

  14. you have coma sleeps too. I live in NZ & have dysautonomia. I've had terrible symptoms the past 2 afternoon/evenings and feeling awful today. So glad I found your blog :-) I will keep reading when I can.

    All the very best!


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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