ShoeStrings

Hi everyone!

 Here is my Feburary blogging for all of you who are interested in seeing where I’m at in my rehab journey!

A reminder for everybody to start snapping pics of you with a pair of shoes (as a jpeg file, 300dpi) and email this with a small blurb (in a word document) about ‘What you’ve learnt from knowing/watching/supporting anyone you know who has had a stroke’ to shoestringsorg@hotmail.com so we can build up the Shoestrings exhibition gallery! If you want to do it in groups, couples, families, feel free to! And if you don’t wish to submit a photograph of yourself, please just send us your blurb and we will apply it to a generic ’shoe’ photograph! The sooner you can send this to us the better!

The NEW shoestrings website will be launched in a few weeks time, so watch this space! On this site you will be able to view everybody’s profiles and photographs!

I’ve also started up another community group called ABI (Acquired Brain Injury) Youth Group. Go to http://mc2.vicnet.net.au/home/abiyouth/index.html to find out more & join up!

Share this info with all you know- it’s amazing how many people know someone who has experienced ’stroke’ and you may really help them out by connecting them with a community they can relate to!

Em x

Those lethal vehicles that nearly kill you in shopping centres! You don’t require a licence, silly really, I even received a ‘pen licence’ in grade 3 to migrate from grey led to ink! I admit purchasing one, to reduce my fatigue and put my teeny-weeny bit of energy into gym
or pool sessions rather than travelling there, was a roundabout thought. However, I never imagined driving one of these myself!

Telling people was the hardest. Either they saw this vehicle as a ‘Em’s giving up’ sign or they said, ‘I thought you should get one of those ages ago…wow, it’d make your life easier!’ I felt the need to reassure others that it was merely a means of getting from A to B without relying on lifts and putting unnecessary effort in. Both remarks made it really clear that giving up was not an option and if they thought it’d make my ‘life easier’ earlier on I wondered why wasn’t it suggested?

So, I succumbed and after test driving many three and four wheel scooters and realising that it’s max speed of 10km/hr would save time, energy and increase my independence hugely, it’s now appealing. Like acquiring a taste for olives! I refuse to ride with a fluro flag and try and be like a truck and purchase one with reversing beeps. However, as time goes by anything that saves my energy is worth it!

Tonight I went to the pool and f
orgot my goggles. As I had to wear them I decided to buy a second pair. I went to the counter and asked for them. While he was searching a queue accumulated behind me, Mum was third in line and assuming that the hold up was due to her daughter interrupted saying “This guy in front just wants to swim, just let him through Em, I’ll drive home and get your old goggles”. I let the inpatient swimmer pass without a thought. Before I could explain that my old goggles leaked, Mum was on her way. Yelling ‘STOP” or ‘Wait! Mum’ would only elicit more stares. My whisper volume was good for gossiping but no help for me at times like this!

Whilst waiting for my goggles on the pool side, tempting my dangling legs in the nice cold water I thought, ‘Why is it that people who have to deal with a disability are blamed? Why did I nearly take the blame and punishment without question?  Why when you gain a disability do you automatically hand over your dignity?’

Why was I angry? Because if I hadn’t of being ‘disabled’ those in the queue would’ve been forced to wait. The guy serving was slow, but I’d taken the blame without question. I knew the goggles were broken and were too tight but instead of declaring that, I exited the pool with red racoon marks around my eyes. Punishment.

It’s 38 degrees today. I chose to sleep at my parent’s, as my fan had nothing on their air conditioner. Despite this, I couldn’t sleep. I felt like I was lying in a pool of sweat, overheated. Like my sweat glands were damaged and the perspiration was stretching my tight skin – like a blind pimple I felt too full to pop. Mum noticed my light on at 2am, I was reading, attempting to diverge the throbbing pain.

In a sleepy state she mumbled, “Em it’s late, you should get some sleep.” Hearing her declare what I’d been trying to do f
or the last 3.5 hours just exacerbated my frustrations. I wanted and needed sleep as if I was tired my early morning swim would be skipped.

“I’m so hot” I said flapping my sheet to generate some air. I was too hot to care that my mum would see me in knickers. “Gee, I’m sleeping with a blanket!” Mum continued whilst checking if my bedroom window was open. Jealous that she was sleeping and with a blanket, I pretended to read. I knew there was nothing Mum could do. I read the words on the page, covering my right eye to single me vision. I say I read the words but I couldn’t tell what I read, I was to side tracked by my near exploding body.

EPWORTH RELIVED

I never thought I’d re enter the Epw
orth Emergency. However, at 8pm rolling around in pain on the carpet, mum drove me there. It hadn’t changed. Again, I waited. Two hours later, dressed in a white gown (now a familiar item) and piled with warm blankets the Dr examined me.  After reading my history briefly he said, “So you’ve had an Aortic Valve Replacement?” He seemed chuffed that he knew what AVM stood for. Both puzzled and horrified, I immediately corrected him “no my heart is great, I had an AVM removed. That’s an arteriovenular malformation”. Embarrassed, he pretended that he knew what an AVM was. However, I was sure that perhaps if he had time later and remembered the abbreviation, the medical thesaurus might tell him. He pressed on my belly and ordered “pain killers and an abdominal x-ray”. More x-rays. More waiting. An hour later I was transferred onto a bed trolley and wheeled to have my insides photographed. I was helped to transfer onto the metal table, and after my trakkies were pulled down my belly was ready. The photo shoot only lasted five minutes. Good, as it meant that nothing serious was wrong. However, it was bad as I’d been waiting for so long. I was transferred quickly and given no time I wasn’t to even pull my trakkies up. My balance was bad enough!!!!

 DRINK BOTTLE

 This m
orning I woke thirsty and, eye still shut, reached for my fitness first drink bottle and drank from it. A simple task, but one that I couldn’t do till today.

No air conditioning and dressed wrongly. I sit on a hard seat. A seat with a tray on my right- another obstacle f
or me. Normally when I sit I collapse into it. However, I would do it and me serious damage if I did.  I sit approx half way around the circle of chairs. In retrospect it was a bad position. A bad chess move. Why bad? Because what I could see in my unpatched eye was continuously moving, my nystagmus moving my audience to the left. Musical chairs without a pause. And they say to give eye contact! Floating eyeballs. After one hour trying to ignore my right eye pain, the fluorescent light wins and I put on my black eye patch.  Obscuring all people on my right, making the ‘human rip’ to my left even more apparent. They say to gauge your audience’s response. How do you when they seem to always move?

DEPENDENCY

Being sick and needing your mum a co-dependent. However, my entire family were interstate. I was forced to be independent. The one time when I want to be cared for. Great! With no mum to get me flat lemonade, hot water bottles, and empty my sick buckets I was lost. Alone. Isolated. A temporary orphan. Whenever you’re sick, you go into hibernation. However, with my eye patch, greasy hair, bra-less state, I was forced to ask family friends for help. I felt like a beggar. I begged and they kindly brought boiled rice, boost juices, medical appointments and prescriptions. I used the last of my energy to try and say thank you.

ESCAPING INFORMATION?

 It’s so embarrassing when a confidential issue gets out. People justifying, “I won’t do it again. I only told so and so because…” – you don’t care why. The fact ‘so and so’ knew was bad enough! When you feel sick you need a boost not a trip-up. It’s even worse when that information becomes common knowledge to the world.