Hidden Pain

Published August 26, 2016 by helentastic67

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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.

Catching trams in Melbourne

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…

Finding a Housemate

Published August 15, 2016 by helentastic67

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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 1^st 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!

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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

Published August 12, 2016 by helentastic67

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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!

No hair Helen

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…

Bad hair day

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;

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‘Let it go! It’s gone! The fights over!’

The Horrors

Published April 4, 2016 by helentastic67

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The Horrors!!!

It’s Friday! Yeah!!!

In my house it means, wash my hair (it’s all grown back now!) and go out with my Young Janice and we go shopping.

So I took down my hair while my Personal Care (PC) carer started her chores and got undressed. Turned on the hot water and…….

NO HOT WATER!!!!

I had a day off yesterday. As in no appointments so no need to leave the house. I had lots of laundry to do so I did 4 loads.

I had notice my hot water service in the backyard had been leaking (from the top) and it seemed to get worse as the day went on.

I had finally sent a text to a friend to rate how bad this was from bad to worse?

The suggested broken thermostat, maybe. Which sounds not as bad (expensive) as having to convince my Property Manger it’s my God given right to have hot water and his job to take a yelling from my landlord if that’s what it took to have them part with the money.

I have those landlords who don’t want to maintain their properties, just want the money.

So, today my hair did not get washed and I had a bucket of water from the kettle and half shower.

Now, it’s the end of the day and a tradie ended up coming and he stated the Hot Water Service was Ka-put!

Glad he has to call my Property Manager, not me…

And the plumber is prepared to work on a Saturday morning because a weekend without a hot shower would just be a horror!

Decisions

Published March 23, 2016 by helentastic67

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Decision

To make a decision, I was given the mantra in my teenage years that if you couldn’t make a decision for yourself, the decision would be made for you and you may not always like the results.

The funny thing about being depressed is you might struggle to make even the most simplest of decisions.

Some people just on observation, get stuck in their own ‘shit’ so much they can’t make a decision to save themselves.

Start with small decisions, things you have to attend to everyday. Then build up to the bigger, harder stuff. If you have serious chronic Medical conditions, make a damn decision. If there are options to try to improve those conditions that will give you the possibility to return life to some form of normalcy try them!

Wait: TRY THEM!!!

You don’t know, if you don’t try them.

Sometimes, making a decision can snowball and if you can fix the things that have held you back some of the other problems are easier to deal with.

Depression can lesson and life can be easier and happier.

Christmas!!!

Published March 14, 2016 by helentastic67

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Christmas!!!

So our Christmas lights have several settings. My sister the lighting tech support recently described one of the settings as the Epileptic Fit Setting.

I’m really lucky I’ve NEVER had an Epileptic fit!

At least not a Clonic Tonic (Grand Mal) seizure.

I have things that give me a migraine, but no epilepsy. Not complaining……just saying.

I once had an appointment with a room full of Neuro type specialists and they couldn’t believe I’d never had a fit considering the size and location of my AVM.

I told the Doctors I had been to my share of dubs and dance parties back in the day and stared at enough strobe lights.

Consider this as a silver lining.

I’ve never had an epileptic fit!

Held Hostage

Published March 11, 2016 by helentastic67

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Once upon a time our family had a cat which had kittens. There was a Ginger cat which was called “Ginger Biscuit”. It very briefly had a rather wry misname of ‘Crumb’ when Mum baked out of the drive way and it didn’t get out of the way. It sustained a broken leg and after a very expensive trip to the vets, came home with a metal rod in its leg. He survived to sun bath on our concrete for his vitamin D, but alas that’s just background. The temperament of this particular cat was really sweet. I once picked him up and sat with him on the couch. At the start he didn’t much go for my need to sit with him on the couch, so I had to hold him to my chest with both arms. Poor Biscuit didn’t have a chance really, however luckily within 2-4 minutes he was touched in and fast asleep purring…

There is something about having a disability and being taken away from your home where you can maintain some of your own independence that is like being held hostage.

When at home, I can pretty much fend for myself. I don’t leave the house every day of the week if I can help it and I prefer to have the help of a carer on the days I do leave the house, but when I’m out of my comfort zone I have to rely on the volunteer assistance from family or friends. I cannot do my own hair, trim my own fingernails or toenails or dry and dress in a timely manner and endeavour. Eventually, like Ginger Biscuit I just accept fate and take what I can get, make the most of it and go to sleep.

And this plays on the depression.

If you think it’s a 1^st world problem that I can’t do my own mani/pedi, I should be so lucky! My nails are soft these days and bend back causing pain, my left toenails if too long get stubbed and badly damaged. My left fingernails get in the way when I’m trying to exercise that hand and keep my fingers flexible. So, yes? My fingernails are an issue. But if you want a stronger example: try this.

Met a woman from the Barwon District, who had come to tell us of her experiences of the NDIS being piloted in her region.

She was in a wheelchair and probably in her late 40’s – early 50’s. She had a package to provide her carers and as she needed a Carer to go from bed to her wheelchair where she spent her day and to a toilet and back to her chair or bed, you might like to imagine the timing of her carers could be rather critical.

She gave the example that one particular day, she couldn’t wait to go to the toilet and her carer was some hours away, so she rang her service providers to request her carer earlier.

They could not provide it to her.

As she sat in her chair on the stage, she told us she couldn’t wait and in the best of spirits announced to us that when her carer did arrive at the rostered time she would have more of a mess to clean up!

Now, I’ve had some “shitty days!” But she was so brave to announce it to us like that and can you imagine it’s a way some people get held hostage to a situation far from their control…

Social Isolation

Published March 8, 2016 by helentastic67

Social Isolation

Sometimes, I try to socially engage with people wherever I go. I do this at the places I go for appointments or the supermarket for groceries. No lifetime friendships, but connecting all the same because it’s how I encourage people to get to know me and see that I’m “Normal!”

At my local supermarket, my favourite checkout chicks have gotten to know me over the years. Even from before my disability.

On Friday, I encountered a newish guy in the Deli/Freezer area. He was restocking the dairy case with milk.

Now, for those who don’t know – Melbourne has had a heatwave the last few days and being in the freezer section of the supermarket is the place to be.

This is the perfect example of how I try to engage with people and retain my sass!

This guy was wearing a big jacket to wear into the cool room. I asked if that jacket was really necessary in this weather.

He tells me it’s for when he’s in the cool room.

I inquire, “What’s a girl gotta do to get in that cool room? He didn’t really reply.

I grabbed my cream and as I moved away I told him,

“I wasn’t trying to sexually harass him in the work place”

I saw he had a big grin on his face and I did a circular motion towards his smile and told him “I was going for that!”

Old People

Published March 4, 2016 by helentastic67

Old lady

There are many things to love about old people! I know a few amazing older ladies. But I’ll tell you about them another time. But I love when older people ask me about my arm.

Usually, pre-empted with “What have you done to yourself?” to which I reply with – “I refuse to take responsibility for this!…….”

And I offer a brief explanation.

Then I ask them the same question. Today I asked this of a gentleman at a Medical Clinic I was at, who had a walking stick. His wife answered for him.

“He’s just gotten old.”

Priceless. Love that answer because then I can tell them I expected it to take years longer before I felt as old as I feel……

Jamima

Published February 29, 2016 by helentastic67

Jamima

Meet Jamima ‘Patch the Pirate Cat’ Puddleduck!
So called for my patchy left eye & my pen chance for sitting on shoulders(until Uncle B comes along, his shoulder h helps me get higher)
I’m the mental Healthcare Provider for a Crazy Cat-Lady. Housemates, boyfriends & even Uncle B have come & gone but my Mum keeps up with the Tuesday Tummy Rub’s!

Stay Tuned……….