2am/Again!
I have written a million posts in my head today! Have a busy week and Melbourne is hot!
Not yet mentioned perhaps but I don’t cope in the heat!
Have a 4 day weekend at the end of this chaos – can’t wait!
Promise to catch up on some writing then.
Sweetdreams…
Hidden Pain
So, I know I get a little backlash out there. My disability has managed to leave me with the ability to walk with the aid of a walking stick (Not complaining).
And therefore I have a level of independence to go out and do things.
Yesterday was Monday, I had my Carer at 9am. We were done an hour later. I made my own breakfast and light lunch. I actually ate my breakfast on the couch for a change. I often eat it in a hurry on the train to the city on the days I go out. Ridiculous!
My appointment wasn’t until 3pm and while I really wanted to go back to bed and to sleep I figured my Landlord was due to mow the lawns. I’ve been watching it get long and overgrown the last two weeks. And let’s face it, I had to get to Medicare to claim two receipts. Medicare is my ‘Other Bank’ and I don’t claim much these days.
So, off I went to the city. That translates like this;
Text my Young John (will tell you about him another time; get your tissues ready) Young John drives me to a train station closer to the city. It’s more convenient and a train goes through every 10 minutes.
Get on train and in the city in about 20 minutes. The train platform is an easy one for me, it is just on Platform 1 so right out onto Flinders Street and cross.
I crossed between 2 pedestrian crossings to save time. Traffic had stopped all the same.
I made a stop at the shop I used to visit to have a quick chat to Peter. He was the 3red stop for me, back in my Promoter days every Monday Peter runs a little independent Music/Clothing/Tattooist/Body art/Gothic shop that is literally down an alley and down in the basement. Awkward stairs. Handrails not on the right but I make it in one piece, because I won’t QUIT!!!
I once flew down the stairs and up again but after a little catch up.
No independent bands touring anytime soon either. Peter goes up and comes back down for me in the lift.
Still had to do about 10 steps down to street level. Anyway, I give a nice older lady some directions as she looks a little lost and confused (don’t we all?).
Walk several large blocks to Medicare. Feel good! Big strides, can see and most people respectfully move out of my way. Not everyone, but most!
Medicare a busy place. Don’t want to wait today so I fill in the forms. Very little information required. Staple and put in the post box.
They will process and by tomorrow, I’ll be $106. Richer!!
Anyway, cross two streets. And wait for a tram.
I’m only going halfway home as that’s where my appointment is. But the tram isn’t a flatbed tram. It’s not disability friendly! So, three big steps. Word from the wise, lead with the stronger leg and I always sit just inside the door. Commonly referred to and by other disabled friends as “My seat!” We each call it that and when we are together we prioritise who needs it more. Or this allows me to sit there because they are gentlemen…
Anyway, get to Collingwood and go into shop that requires a few steps. No handrail. Walk 15 minutes to appointment. Was warm as the last day of summer in Melbourne.
Time to sit for a bit before my appointment.
I see Gerry who does Shiatsu every 3-4 weeks for an hour, he works on my back, shoulders and arms and a little on my neck.
Afterwards, he gives me a lift up the street (it’s uphill) and I heave myself up onto the tram again for the 20 minute journey home.
Off tram at my stop and walk 10-15 minutes. Happy to get home, not too desperate for the loo. 5 steps up and inside!
So Tuesday. Got the day off today. No appointments! Just phone calls to make sure my Carers are sorted for the next 10 days and any transport needs.
Struggle to get it together! Things hurt! For once my head doesn’t hurt but my thighs hurt and my right shoulder and arm. And it hurts to walk. Want to make reference to feel like, I’ve been on a horse for a week, but don’t know what that’s like. Dragging my left foot a little today.
Lastly, while my transport yesterday was all fine and Gerry volunteers his time today I’m paying for it!
Every step, every curb I negotiated I’m feeling it today! And tomorrow we do it all again.
Closer to home this time, but Wednesday is my pinchy/stabby day.
Chiropractor followed by Acupuncture. Two appointments I have weekly to help me maintain my independence. Having a disability really is a full time job…
I confess I am just hearing drink more coffee and eat more chocolate! However, never stop learning!
Moving Past Mind-Blips and “Senior Moments”
Maintaining & improving your brain’s vitality as you age
by Madelyn Griffith-Haynie,CTP, CMC, A.C.T, MCC, SCAC
ReflectionsonCognitive Impairment and Dementia Protection“A mind equipped with a wide range of
previously formed pattern recognition devices
can withstand the effects of neuroerosion
for a long time.”~ Dr. Elkhonon Goldberg, PhD, from
The Wisdom ParadoxAlong with suggestions designed to help, this article begins to debunk the myth of “to be expected” age-related cognitive decline — as it explains the mechanics of memory and outlines the functional trajectory of the healthy brain as time marches on.
In the Memory Issues Series, anyone currently struggling to fit into a neurotypical mold, even if you are GenX or younger, will find a lot of information that will help you develop effective you-specific strategies to work around some of the…
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Waxing!
Wax on! Wax off! OK, this is not going to be a blog about the 80’s film Karate Kid, but life is short and I covered some intense replies yesterday.
If you forgot, didn’t realise and take it all in, recapping I have less sensation on my left side, generally looking like a stroke and referred to as a Hemi. Has a longer term, but let’s start with that.
(Hemiplegia: total or partial paralysis of one side of the body that results from disease of or injury to the motor centres of the brain)
Every so often, I still like to get a leg wax. No one see’s my legs that count. But every now and again even my Carers will comment. They don’t get out of control, but word from the wise;
HEAT ENCOURAGES HAIR GROWTH!
I try to keep an eye on them and I gauge it as;
It’s not that bad yet!
A little longer!
Start saving!
And God damn it! It’s going to hurt!
So, Fun-Fact Ladies
Things that make waxing hurt more.
Crazy lady hormones, 1 week on either side – JUST DO IT!
Stimulants! COFFEE!!!!!
Save your coffee for after waxing…
So, you would think with my ‘Hemi’ that my left leg wouldn’t hurt as much?
I should be so lucky! They fucking hurt the same!!!!!!
Today my beautician actually asked which leg I wanted waxed first. To be clear, she does them both at the same time and you rotate like a chicken on a rotisserie “thing” in an over, but the reason she asked is because I’m right handed.
Therefore the left leg will hurt more. To be clear, it’s nice to get a leg wax every now and again, even if I don’t wear shorts out of the house and only my Carers all woman see them. It’s something I do for me.
But these days, I even self-medicate for a leg wax!
I find 10mg of Oxy normal is my ‘Happy Place’ for a level of tolerance! 3 hours of pain relief while my left leg twitches is about all I can deal with.
So, there you go, 1 F** Bomb and an amazing little ditty for something different.
Final result…
2011
Remembrance Day! Let’s come back to that!
Don’t get excited, not in the way we would wish!
I also learned about Morphine as a form of pain relief!
On the 6th January I lifted a heavy suit case one handed!
My OT’s had been very impressed with my maintaining a level of independence often carrying a 10 kg bag of Kitty Litter through the house to save my Carers doing it or my ex, before he left.
But that suitcase was the straw that broke the camel’s back. First, I think it just hurt to sit! It was pure agony, pain shooting down my good leg…
I has some tests, x-rays and muscle relaxants and after a period of time trying to find the right drug for pain relief and the right tests. I found myself spending a year on my bed waiting for surgery to a bulging disc.
While working my way through enough Oxy to drug a horse.
While in hindsight, I’ve spent a lot of time with a headache, I’ve likely said, I wasn’t one to reach for pills. I wasn’t anti-pills however, there was always other ways to treat it. An Osteo (Osteopath) or a Chiropractor!
A migraine always meant a trip to the Chiropractors to put my Atlas Bone in or adjust it! (http://simpleascension.com/out-of-alignment-atlas-bone-now-known-to-cause-dozens-of-health-issues/ )
Good night sleep, back to normal!
Where was I? So after a period of time found the perfect balance of drugs for maintaining a prone existence that year was;
20mg’s Oxy Contin during the day. That’s the slow release!
10mg’s Oxy Contin at night.
And if I had a brief taxi ride to my chiropractors twice a week, I would take 5mg’s Oxy Norm. (Fast release, but really only 3 hours!)
I didn’t see much of the world that year!
I would taxi to my GP and see him while lying on his table (bed)…
And your likely wondering what the significance to Remembrance Day is? Keeping in mind I lifted that heavy suitcase on January 6th. Remembrance Day is November 11. that was the day I finally had surgery. I’d had 2 Nerve Root injections. Which were not my favourite and hurt like a needle being rammed into my spine without anesthetic. No wait. That’s literally exactly what it was. Twice!
And that comment about the horse? Oh, yeah. At the end of the year I saw my dentist for a small filling. He gave me an injection and even after a few minutes I could still feel him drilling. After a second injection, I could still feel him drilling. Now, I hate to repeat myself but after the second injection I could still feel him drilling. But after the third I was all good to go!
My dentist who knew I’d spent the year on opiates for pain relief likened me to a horse because I’d build up a tolerance and the average dose wasn’t enough.
Ironically, my filling was on my right side. And I had to go to my GP afterwards. With my facial droop on my left I already slur a little when I speak and if I’m particularly tired. So, that day I really did sound as if I’d had a stroke. Luckily my GP is fluent in several languages including stroke. Winning!
Finding a Housemate
So, finding a housemate is crap at the best of times. I wish I’d counted how many people I’d do the song and dance for to present myself as a normal person, just so I could find a responsible adult to share the rent and expenses.
I just found this description of someone I had look through that 1st house. Because sometimes it’s now you re call people not by name of how they look.
Here goes;
“Horror/Action/Gemini/Butcher/Maids outfit while cleaning/Cross dresser/Porn!
Also think this was a guy who said he would be happy to be my Carer. (help me after a shower etc)
To be clear that was never going to happen!
I don’t require my housemate to help me EVER that requires them to see me naked! Boundaries people.
Briefly, I had a woman move in who told me one thing and did another.
Then had a tall Frenchman move in who stayed a year. He paid the rent and worked away at times giving the place to myself – Bliss!
He was not, I repeat, NOT my favourite ever housemate. He wasn’t my least favourite either. But he wasn’t my favourite and I now try hard not to judge other French tourists and such by my year or so co-habituating with him.
Some woman would ask “Oh, French, so sexy!”
To which I would reply “Um?, No!” Bon!
Then I had to move and find a new housemate!
Moving is annoying at the best of times!
Moving with a disability is a pain in the ASS!!!
Retrograde
Have a very bad case of procrastination now! And it’s partly because I just want to write about what’s happening in life now and partly because in order to have any of it make sense you need to know about what happened in the past. And as far as the post, I’m up to telling about some of the “hard parts”! So I guess were going RETROGRADE! Just for a little while!
And I might start by mentioning how important a woman’s hair is to her self-worth and her identity. And I mention this, perhaps (again) because it’s important…
My treatment, literally 20 (?) day’s ended on a Friday. On the weekend my partner (sorry, boyfriend) had his daughter with us and on the Sunday morning I got in the shower to wash my hair, so I could be presentable for an outing. We went to some typical ‘family’ adventure in Carlton and my scalp had been a little itchy around the hairline around the back.
I took my hair down, usually worn in a bun and I had matted bits. I pulled them out and got in the shower. I would normally brush it with conditioner in it. There was a corner part of the bath (shower over bath) where I could sit and as I brushed it, it kept coming out in my hands.
I don’t recall crying that day. I didn’t know how bad it was. I got out of the shower dried, dressed and put my hair up (wet).
Then I looked in the mirror!
It was bad!
It was so obvious how much hair I’d lost, I had my boyfriend bring me my phone and I rang a friend. An old lady who lived in an old people’s village in the same suburb.
I had waited in the bathroom not wanting to scare my boyfriend’s daughter as she was about 4 years old!
I also didn’t know how to fashion/style the scarf, so she helped me with that also.
We went out and someone’s young daughter was looking at me oddly. I felt very self-conscious and I felt a little like the young girl thought I was a Muslim woman. (Not that there’s anything wrong with that!)
The Monday morning, I washed my hair again and this time I did cry. I also had the time to cry as well. And I got how Samantha from (SATC) had felt!
I wept!
That day, I texted my boyfriend and said simply ‘Hey Honey, can you buzz my hair off tonight?’ to which he simply replied ‘sure’ or ‘yes’ or whatever! And that is how I came to lean forward over the bathroom sink about once a month for six months until it started to grow back evenly.
When we had this routine our conversations went something like this;
Keeping in mind my boyfriend wore his hair as a Number one and was from the States and yet to get his permanent residency.
‘I wonder where the local recruitment office is’
To which I would answer;
They will take you before they take me!’
Oh, how we laughed!
What follows is a series of photos of my hair, or lack of and stages of it growing back.
I had pretty much stuck to the same hairstyle since I grew my hair out at about 16, so I really never thought to keep it short.
My bun and long hair had been my style ever since. I have curlier hair when it’s short and that translates to I hate curls!
Now about 8 years later I’m back to a once yearly haircut even if it means I have 4 inches off. I’m OK with that. Its reasonable low maintenance and I wash it on a Monday and Friday, my carers brushing it for me as I stand in the shower then they put it up for me. Sunday and Thursday being my messy hair days.
There are short bits around my temple and the back that drives me crazy another reason I don’t think short hair is for me…
My anxiety would make me play with it a lot and I don’t need that. So, I figure.
Anyway, that’s enough about hair because when I complained about it to my nurse where I had my treatment she told me not to complain as I was ‘Lucky to have hair!’
I just wish I’d been told to get some hats! I was given a voucher of $50 for a wig and by the time that happened some of the side effects had kicked in and I didn’t have 2 working arms to put on a wig… If anyone has ever brought a wig or gone shopping for one, they would also tell you $50 is not going to help!
When I had no hair I really noticed old men sporting the comb-over hairdo! They really seemed to be more noticeable then. I wanted to go stand next to them and take off my hat and tell them;
‘Let it go! It’s gone! The fights over!’
Auditory!
Have been having many auditory issues of late. While my stroke/not-stroke has affected the left side of my body from my toes to my face, my brain still functions very sharply. I manage my own appointments and day to day stuff, I pay my own rent and bills and I negotiate much of my own services and whatever! My home is clean and tidy (mostly) and I may be one handed, but I’m always moving around the unit with something in my hand keeping everything in its place.
I am considered a high-functioning ABI! It’s because I’ve had no trauma, which is rare! I’m not saying I’m special, but I am “she says tongue in cheek!” High functioning for me is because I’ve managed to avoid trauma to my brain. No surgery (cutting) and my memory has remained intact. I consider I have a very good memory, long and short term. My mum would disagree, but she would be wrong.
But lately my sensory issues have made me a little fuzzy and it’s starting to bug me.
I can go out and do my own shopping, pay my own bills, do that ‘stuff’ and even reschedule appointments ‘on the fly’ if I’ve got a busy schedule or am early for an appointment and have a little wriggle room but it can all go to shit when someone’s around re talking in my left ear or distracts me somehow.
My concentration becomes harder to keep on track, my self-processes and coping skills can all go to hell in a second.
And no matter how much I plan ahead to have things go smoothly at the end of the day from that moment on, I’m going to get a migraine.
Grumpy! But consistent!
Once upon a time, back in the day of when I worked in clubs, I had a habit of standing near the ‘doorbitch’ off to one side.
Actually, at this point I should explain the ‘doorbitch’ was generally the ‘hot-sexy-chic’ with attitude outside checking for suitable clientele to be allowed into the venue. In this case, I am referring to the other ‘Hot-Chic’ who did none of the ‘take your money’ and give you other kind of attitude.
I used to stand to one side of her to wait for my friends to greet people I knew and assure them the next level of the club would soon be open and sometimes to give my drink-card to a grumpy patron who didn’t want to wait for their favourite DJ/floor to be open for their pleasure.
Sometimes, I stood there to be protective of the doorbitch, so I could do ‘Grumpy’ when anyone wanted to give her attitude.
Seriously! You have just walked up three flights of stairs before even paying any money! All you need to do now is pay some money (very little, really) then proceed to the bar (over-there) The DJ booth (over-there) and the dance floor (over-there)!
Have a good night!
Why the attitude?
So at times I enjoyed doing the stance of feet apart hands behind the back, polite smile but occasional snarl. Sounds bitchy – don’t I?
My boss came up to me and told me he ‘wanted me out there!’ Talking obviously, circulating and whatever.
And quite frankly, I’d been there from 9pm, I would still be there at 5am! And sometimes I didn’t want to have to be prostituted and paraded all fucking night so I would pick and choose my time Thank-you!
I would wander off to have it seem as if I was doing his bidding, but after I had done the rounds I would return to be told by the ‘doorbitch’ she didn’t care what the boss had said, she appreciated me being there. It made her feel ‘safe’!
The message here is ‘sometime you just need someone to stand out and do silent and overbearing grumpy to make sure people do their job/or just be a decent human being in this case.’
And then there’s today’s dilemma.
Tomorrow, I’m doing a day of training! A whole day! I know exciting!
Its training so I can sit on committee’s and boards and have a voice to make changes etc. Or else what’s the point of having a brain injury and the intelligence of being able to make it easier for others in the future.
Normally, on the Friday (fortnightly) I have certain services to clean my home and get taken shopping.
Trying to plan ahead, I contacted my service provider to move those services to the Thursday. I would still need a carer on Friday in the early/early morning (8am), so I could have help and be presentable and be able to get myself to the city to participate from 10.30am – 5pm!
I cannot tell you how many times I’ve had to speak to negotiate, demand whatever for someone to do their God-Damn job and roster people at the correct time, so I can go to this training day!
It has gotten to the point that every time the service provider has failed to get this simple request right, I’ve called on my mum to step in and fix this!
As you can imagine, it’s not the first time and I rarely ask anyone to solve these things, but eventually I think enough is enough and it shouldn’t be this hard. And you can imagine my mum is over this as well, because she first tries to manage me! Which I hate.
Because I’ve still got to deal with what I still have to do. I need to eat, have caffeine so I can go pay a bill so I can keep awake and avoid the pre-dinner kip, so I can go to sleep before midnight…
So I can wake up at 8am and hopefully have a carer here who knows my routine, so I can start the day without too many busy questions, so I can have breakfast on the train into the city.
So, I can collect a coffee before going into training and so I can retain information and contribute not just to the training but to the community and to life.
Sometimes, I want my mum to do silent and grumpy and overbearing to get shit done…
The Universe!
Received a great message from the Universe today!
Have had a busy week and while rent is weeks away, I’ve been consulting my diary to schedule bill paying to take advantage of discounts for paying on time, and referrals to my chiropractor that means I can claim back from Medicare.
Every week before I go shopping I budget for cash out so I work with cash as much as possible, $5.00 for coffee here, $50.00 for my chiropractor there, beautician, etc. Because every bit counts. Every Thursday I check my accounts online and worry there’s not enough!
Last night I was considering if only I could afford some new bras! I don’t buy expensive bras. Certainly nothing special. These days it’s all about keeping the ‘girls’ restrained in comfort without the world seeing what kind of bra I’m wearing under my T – shirts!
These day’s I buy boring T – shirts, bras and I buy 2 for the price of 1! Sounds exciting doesn’t it? Not!
I’m happy these days if I can get one that isn’t fluoro orange and is a colour my carers can say “oh! Helen that’s a nice colour!” aqua by the way! That’s about as exciting as it gets! Sorry!
Anyway, I digress. I was considering when there would even be enough to pay the rent, pay the bills and get the Visa down a little (never ending)keep on top of ordering and affording the pills and ‘stuff’ and I could get 2 new bras! WHEN?
And, the Universe provided!
Some people may not be familiar with the concept of the “Universe”.
I’m not a big believer in God! Blind – faith, what-not! And I’m not criticising anyone who does. Do what you will unless it inflicts pain and injury upon others. However, I do have a belief that sometimes, if you’re a nice enough human being, give something to others and not try to live a selfish existence then maybe a higher being will reward or look after you.
And today, it happened!
In the mail came a registered envelope which I signed for. (Not an everyday occurrence) and when I opened it, there was a ‘thank you’ card!
From whom? What for?
And a $100.00 credit card voucher! Oh?
Still anxious from where it had originated………….
Last year, I had volunteered at a new ABI unit with my hospital across town for ½ a day!
I participated in an ‘audit’ to see all new ABI patients from now on at this one especially designed and purpose built unit. It’s for in-patients and while I was never in a position to require inpatient care (bonus) I could really see what a great facility they have built!
Do yourself a favour and avoid a brain injury! However, if you are in Victoria Australia and need to be in an ABI unit somewhere, this is the one you want to be at!
http://www.alfredhealthabirehab.org.au
Pity there are not more pictures, well I didn’t see any but it’s a great, clean new facility where you get your own room and private bathroom! (And just how important that is you don’t want to find out)
And anyway, was not expecting anything but a nice feeling from offering feedback of what I thought would be useful, etc and instead?
Helen gets hew bras.
New peace, love and respect for the Universe…
Hell onWheels/Life One Handed 