Monday 9 May 2011

The Ministry of Silly Walks

Walking shouldn't be hard, should it?  If my eldest could walk at 9mths, surely I should be able to walk with ease at 37.  Mind you, I am walking like he was at 9mths.  Furniture and wall walking my way through the world.  It's a good look.  What is cute and gives rises to "oohs" and "ahhs" and "who's a clever boy" at 9mths, is not met with the same enthusiasm by the general public at age 37.  Instead I am the recipient of 'those' looks.  And little whispered comments, which seem to include the word 'drunk' quite frequently.  If only, judgmental old biddies.  If only.

These past few weeks I have been walking like a drunken sailor, minus the barrel of rum in my belly.  I have found that my gait is getting wider, what in the old work days I would have thought of as a classic alcoholic ataxia.  Only I have had hardly enough alcohol to pickle an olive, let alone my cerebellum.  My muscles have been uncooperative little buggers, and my weakness increasing.  They simply feel 'wrong' when I walk. 

Can't wait to give Uberneuro that descriptor when I see him in June.  A patient's inability to explain their symptoms was always a frustration for both parties, back in my work days.  I would hand them a sheet of descriptors to pick from when they were finding it particularly difficult. Maybe I should see if I can find it again, to use for myself. Damn, that's a depressing thought.

I don't really know why it's come to a head lately.  Maybe it's just the effects of my recent back issues tipping things over the edge.  I'm not really sure.  Given that my pulse pressure (systolic minus diastolic) has also been in the toilet I think Bob is getting a bit frisky in his old age.  When 40 is optimal, 30 is considered okay, 20 is considered shock, and all I can muster is a pissy 9, well it's not a particularly good situation.  It could just be a phase, and I'm truly hoping that's the case.  All jokes aside, the past month or so has really been hard and I've had about enough.

(Was lying down at the time I recorded this)

My neuro symptoms have been getting worse overall.  I tick and shake, and have muscle fasciculations up the wahzoo.  Managed to burn myself on the stove again thanks to the reduced feeling in my hands (good old SNAFU), which is always fun.  I asked my youngest if I had burnt my finger and he rubbed it, taking off a layer of skin.  Apparently what looked like flour was a wee bit of charred skin and we both had a bit of an "oh shit" moment.  

Luckily I finally have my appointment date so fingers crossed Uberneuro will have a clue.  I used to take classes with him back in the day so I am confident he's the go-to-guy when no one else has a clue.  But seeing someone I knew on a more professional basis will be uncomfortable to say the least.  I know his current Neuropsychologist quite well.  I was on our state professional board with her, so I'm really hoping I don't bump into her.   It's moments like those that I feel really self-conscious and it all gets a bit confronting. Ugh. That's all way to serious and depressing.  Will now play my happy song in my head and settle down to a nice bowl of denial.

I have finally taken the plunge this past week, and am now the less-than-proud owner of a walking stick.  I have put it off for a very long time, despite having balance issues on and off for quite a while (okay couple of years).  I knew I needed one, but my mind screamed "NOOOOOOOOO........" every time I saw one.  Now before anyone starts saying, "well you have to be practical Michelle", you should also know I will beat you to a pulp with my stick if you even start to go there.

People need to realise that:

Logic and Chronic Illness are not friends.  

They're not even casual acquaintances.  

In fact, if Chronic Illness was to serve Logic a drink it'd probably spit in the glass and smirk, whilst they watched them drink.

It's a mind space that you are either in, or you're not.  There's not a lot of grey.  Logically I have known that I needed some form of walking aide for well over a year.  But every fibre of my body has rebelled against the idea. 

I had a similar predicament with the shower chair.  I have a shower chair now, and I love it.  It means I can shower without face planting.  It means I can have the water above tepid, and stay in for longer than a nanosecond.  And it sure as hell beats sitting in the bottom of my manky shower.  All good things.  But the lead up to getting a shower chair was not paved with lollipops, kittens and rationality.  

Buying a shower chair represented tangible proof that I was broken.  Ptooey!  I spit on 'broken'.  "That's not me," I shouted whilst raising my fist in the air in defiance.  Not that anyone was listening.  Except my dogs, and they just looked confused.  It certainly didn't help that they were sold in the 'Aged Care' section of the store.  After a long period of denial, ranting, head shaking from a long suffering Mr Grumpy, and traumatising my dogs, I purchased a shower chair.  There may have been some pouting and swearing involved.  I may also have forcefully thrown it at my shower, rather than going for gentle placement. Whatever.

I still remember sitting down for the first time and thinking to myself,

"I'll show them.  It wont make one bit of difference.  I'll be right and they'll be wrong.  And I'll say see, see, SEEEEEEEEEE I was right, losers".   

But damn it.  It was better.  And easier.  And they were right.  And I was wrong.  Bastards.   See the extreme lack of logic involved?  I think I should be studied.  Or at least better medicated.

The reality is that I am now disabled.  And at some level I acknowledge that.  But there is a very large irrational part of me that continues to rally against that label. I spent my professional life, working in neurorehabilitation.  I helped to plan ways to maximise independence, including the use of lifestyle aides like shower chairs.  I know the theory.  I've seen it in practice.  And yet I still rally against it all.  As I said, logic is not my friend.

The acquisition of a walking stick has fallen into the same category of rabid illogical thought processes.  No doubt there will be many other items that will flail beneath the sword of irrationality, before I finally reach the point of acceptance and pull my head out of my own arse and acquiesce.

I am still on the lookout for a groovy walking stick, is that an oxymoron?  I'm not sure.  I really want one of those classy silver handled, black ones that look like they should be in an Agatha Christie movie.  But will have to save up my pennies.  I do feel as though I should be wearing a top hat and a monocle when I walk with my current stick.  And saying things like "tally ho", or "jolly good show old chap".  Or at least break into a song and dance routine complete with jazz hands and spirit fingers.  But baby steps first.  Coordinating, two legs, a stick, a handbag and breathing is still troublesome at present. 

(It's grannified but it works)

I have used my stick as a light sabre, complete with sound effects.  And as an improvised guitar whilst listening to AC/DC.  It has also proven a great tool to poke cheeky children.

I did see a fantastic sword cane (think Crispin Glover's, The Thin Man in Charlies' Angels)  which I want very badly.  That way I can stab people who tell me it's greatI finally purchased a walking stick.  And muggers beware, this disabled, uncoordinated chick would take you out.  It's all very James Bond.  Maybe I can also get one of those bowler that cuts off peoples heads, like Oddjob's in Goldfinger.  Now there's an idea.  I think I'm finally starting to come round to this whole walking stick idea.

The dapper Michelle ;)

The Ministry of Silly Walks, Monty Python (1970)


  1. Can I just say this blog is what got me through the day today? Every time I read it, I just get more and more excited about what’s next. I’m glad that I came across this when I did. I love what you’ve got to say and the way you say it.

  2. Nothing a little glue and red glitter can't fix! Coordinating'd look fabulous!

  3. for fear of being shot with your stick, i wont mention what a good idea it is! when the OT suggested i have a stairlift, i recoiled. no, until i am upstairs bound some metal device wont be stuck to the wall. maybe the reluctance to some might sound crazy, yet i think we give in when we have to and then the time is right for us. x

  4. Well, at least now I know I'm not the only crazy one... Not only did it take me forever to be convinced to buy a walking stick - it's taken even longer for me to "remember" to use it... Hate the thing - and hate that it makes walking less complicated. You are soooo right, Logic and Chronic Illness are NOT friends.

  5. Well as usual these days I wrote a really long and rambly comment but my stupid wireless connection went away again. I have given up complaining about it preferring to moan a lot to all who will listen. In fact I may post about it on the off chance someone who understands geeky stuff reads umm not holding out my hopes there.

    Anyway back to you. I like you have held out on all the aides apart from my leg brace and wrist supports etc I use. Despite the fact that OT and wheelchair services want to fill up my life with everything that would help. I go into meltdown when they ring, on the whole too embarrassed stupid I know to let them in my house because its too untidy but I know pyshologically its all about denial. So I totally get what you are saying about 'the cane'. I like you am good at the whole oh I would use such an such a one, you know a special one that only vast sums of money that I don't have would provide. But its all the same thing, these things would to me illogically mean thats it, I am sick. Instead of the intelligent option which is they will help me and help prevent injury so I should use them instead of remaining a hermit.

    So I hear you.

    On the worrying about meeting an ex-colleague I would be exactly the same. Except I never even achieved the whole degree and masters thing so wouldn't be in the situation in the first place but I am going to say this. Bob has taken your career, your freedom, but I will not let him make you feel like a lesser person because you are sick. I absolutely ban him from doing this. So if ex colleague is to see you, just think I bet you have no friends as you work all the time and lucky me have all these wonderful friends all over the world from blogging because I can. So there.

    Its not giving in by the way its enabling, thats what my other bloggy friends say anyhow!

    So despite the fact I have blogged about the whole wheelchair aides thing I may have to do it again to be sure.

    Oh and by the way you are so right - Logic and chronic illness are not friends.

  6. I think when we need to hold the stick we have to.Not too many ways we can manipulate the truth that sometimes health gets the better of us.Still life goes on and brilliantly so.

  7. It makes sense to me that getting an assistive device such as a shower chair makes being disabled/having a disability feel more official. I'm so glad that it helps you, though. When I was thinking about getting a cane for my own intermittent balance issues (cerebellum malformation), my friend told me to think of it as something that would help me DO more during wobbly times, not something that would limit me. That helped me.

    By the way, sorry to see your heart's really racing. I'm having that issue myself today and yesterday. I thought maybe it was the heat. I stopped blogging about my health a long time ago, but this post and the great comments from people who can identify with you, is helping me get comfortable with the idea of writing about my own issues again. So thanks!

  8. This is normally where Small Talk Sam would chime in and go "Well, at least you've got your health..."

    Um, yeah. Sorry love, glad to see you're still plugging on though.

  9. Suomi - thanks for your lovely comment. I'm glad my words could help in a small way.

    Deb - glitter is the solution to all life's problems. You simply can't be sad when there are sparkles in your life :)

    Em - never fear I wont shoot you with my sick :) I know you get it. I was told by the neuro to consider a commode for night time. I told him in no uncertain terms that would not be happening whilst I can still drag my body to the loo. A bowl of pee next to my head at night is not my idea of a fun time.

  10. Neuropoet3 - maybe we have an international case of folie a deux because crazy is certainly order of the day with chronic illness.

    Achelois - how did I know you would get my insanity? Why getting aids represents admitting I actually am sick i'll never know. I really do think I should be studied for my increasing insanity in regard to these issues. Luckily I didn't run into anyone I knew so didn't have to face my fears. I know I shouldn't care and I beat myself up for caring. crazy town strikes again. Ugh!

    My phsyio wants us to take a trip to the assisted living centre in town, essentially a demonstration house completely set up for the disabled. I have yet to agree as I just can't face that yet. Surely if i don't go it means I'm fine right?

  11. Loveable - I hope you do start writing about your health again. I always enjoyed the posts you did on that topic. I do think it's easy to believe that others wont understand your experience, feelings etc when you don't share them. I know for myself that I have had great feedback from the start, the occasional troll but I just block them. I've been following the work you've been doing with health promotion and love what you're doing.

  12. - no need to be sorry. It is what it is. Shit really does happen and sometimes you just have to laugh or find a very large bottle of tequila.

  13. CRACKING UP!! I am newly diagnosed and am also on the fence with the cane. I broke my foot awhile ago and sadly had to admit it helped with over all balance. I still leave it in the car incase I need it but have yet to break it out without a scowl

    1. I think having a scowl when using it is pretty much mandatory ;)


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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