Please Don’t Call

PLEASE DON’T CALL

I really want to thank you for calling me today to tell me all the things I should be doing. You haven’t responded to any of my friendly messages for months now.

I had some good news to share, but you didn’t ask, nor could I get a word in edgewise. I’ve just had a 4-day weekend on the 4^th lockdown in Melbourne, some appointments cancelled I’d been trying to get done since they didn’t happen in 2020.

Fuck you COVID! No, I really mean it this time!

It is imagined that people with disabilities have not been financially impacted, since we don’t work. We haven’t lost work and why should we matter.

Well, I shall tell you how. Allow me.

These days I do take more ‘healthy pills’ than medications so I can live to the at least 65. I can afford to live till then.

herbal pills in wooden spoon with ginger root, Kaffir lime fruit and flower on dark brown wood background with copy space. Above view.

Shut up! I will explain that expiry date another day.

COVID has meant everyone and their cat and dog has been out buying ‘healthy pills’ to avoid getting or dying from COVID. It’s a fair call. I can’t blame you all. However, many of my healthy pills I buy in bulk so I can get bulk discounts and pay less over time and because my suppliers have had limited stock, they have not allowed me to do this. I’m not talking about truckloads, just 2 x 200 tablets of magnesium. Just an example.

But I don’t need someone who is not on the ‘coal face’ of living on the edge financially and choosing what I’m meant to do without to ‘help’ me decide I can give up my weekly chiropractor visits.

You all realize I have lost many of my pain management appointments due to lockdown, right. And you want me to deal with a rib out as well. The rib still hurts despite being put back in last Friday. It’s Thursday night as I write this.

So, it’s really shitty when people who are meant to love me are awfully opinionated about what I can do when they are not me.

You know that moment when if there was a statistic that said if there was one person in every family of four to have a disability. The only person in your family who could deal with said disability well, it’s you. Yeah, I knew this some years ago.

Now I needed to ask for a loan, quite happy to pay it back. But without even knowing what it was for, you decide to give me a lecture about managing dollars better. Stop helping!

You are upset, because I didn’t ask how you are. It was hard to get a word in edgewise, and I was already having your opinions and the opinions of other people who are not me to get a word in edgewise.

So, now my days is not done, I don’t have the energy to ‘deal’ with anything else today.

I’m feeling really shitty. My head hurts, my left eye is pounding (the indication of my migraine these days). So, I’m going to bed for a cry and a kip.

Now I need to feel like eating sometimes so I can sleep tonight and get up and do all the things again tomorrow.

Meanwhile, the rent gets paid. The lights go on. I’m not starving and I can put one foot in front of another knowing I don’t ask for help often but when I do, I really need it.

Then, maybe I’ll be able to smile a little. Or I can try and if that’s how you are going to be, please don’t call.

Today’s Lunch – 24th October 2018

Today’s Lunch

Good Mental Health Day

45! 45, 45! Repeat after me! Helen is still 45! Because, my next mid-week blog post I will not be able to say this, I’m not struggling with getting older, or closer to 50, it’s only a day older than the day before.

I’m not exactly anywhere near where I imagined life to look like by this age. I don’t know what a 46-year-old should dress, or act, or even be doing however I’m doing the best with what I have.

Still trying to have my Wednesday return to some kind of normal, but it’s taking longer than I imagined. So, I’ve been missing out on my favourite cafe. But I will remedy this on Monday and hopefully next Wednesday!

In a meeting for lunch today, for the self-advocacy group I’m part of, not for fun but important. To be continued……………….

Meanwhile, here’s what I had for lunch! Butter chicken with white rice and a paratha.
Have to get medicine later!

 

 

 

 

 

 

 

 

Cheers,
H

 

Grumpy

Grumpy

I confess to say, on some days I make my carers laugh before they even get in the front door. I generally sleep until my carer rings the doorbell and wakes me. I know, what a princess, I usually wake and go back to sleep from only hours after I go to bed, so it’s weird sleep and any coma-like sleep I get from 7am until my carer arrives and rings the doorbell is maybe going to wake me.

I stumble out of bed towards the front door, usually calling out “Hang on”. Beside the front door are panels of glass, so I sometimes see them raise their arm to press the doorbell again. I let out a low growl. I’m sure my neighbours must think these women who come and go laughing must think I am mad.

At other times like this morning, Aunty Christine (one of my carers I’ve had for the last four years) was grumpy. She has been overworked and recent leave, she has taken off work, to be a full-time carer at home for family and stressing about all of that.

I’ve been stressed about life, the Universe and everything also, so while sitting on the edge of the bath while waiting to get dried, I had time to have a little scratch.

I scratch just about everywhere I could reach with my right hand. It’s kinda what I do when anxious, it’s also been hot, so some might be heat rash.

Out comes the Tea Tree Oil and the moisturiser. She prepares to do the oil on my back. The other carers have been neglectful.

Aunty Christine has a little swear about that. (We have set up a standard where she only does this with me and no other clients. I’m very much OK with it) We move to the lounge and she picks up my AFO. She picks it up by a part that was added on after it was made. It was meant to solve a problem that wouldn’t have existed, if they had made what they were meant to make the first time, instead of a ‘Piss-Arse’ effort that caused me more problems than solved.

Christine has a swear about the AFO’s also. I tell her it’s getting completely replaced Thursday, one whole day away. She threatens to bring her glue gun to fix it.

She notices my toe nails are a bit long, we had already discussed my scratching, my heat rash on my weak arm, back and side. Basically, anywhere I could reach with my right hand. Again, my nails are being attended to on Thursday. Nothing too expensive or extravagant, just maintenance I can’t do and I’m not allowed to have my carers to do for me.

Those humans I choose to interact with and the teasing make life all worth while. Make sure teasing is teasing though and don’t take it too far. That’s when it becomes bullying. Very fine line!

And now, as time has passed I’m now aware the scratching is partly to do with me sliding into the Pause…….(menopause)

Super! Right?

It just gets better and better……..

 

Life

Life

If you’re not living; You’re just waiting to die. I’m often forced to re-evaluate what life is all about.

I used to think life would be about having my own family, my ideal picture more recently being a husband and cat and dog. A mortgage (likely) a career, a business of some sort and enough freedom to afford a holiday to foreign shores every now and again.

Since my diagnosis and then my disability, some of these things have faded from being possibilities or a reality?

In many ways, I do feel like I’m just passing time and I’m not sure what life is meant to be about, in the big scheme of things. I’m still trying to make a difference every day with the little things I do and the everyday interactions, but right now I’m wondering what I should be doing differently so I’m not found months or years after I pass away, unnoticed by the world in my armchair as an old lady surrounded by 20 hungry cats…

Life – Part 2

Life

“If you are not living you’re just waiting to die!”

I’ve been questioning this lately because when I was younger I imagined life meant work, family and eventually “green pastures”. Meaning a comfortable retirement eventually after a sufficiently lengthy work life!

I’m pretty certain having children is never going to happen from this body. While not menopausal, I’ve done my time changing nappies for 2 younger sisters cured me of needing to make up for it now.

I’m not apologetic to say that when I’m out shopping or in Cafes and I hear a baby cry or screech. It’s the sound of my ovaries drying up! I’m certain my body would struggle with caring for a baby, my back certainly would not cope. A second disc bulge, while pregnant? Pass! Hell NO!

Marriage is an endless possibility, so yet to rule that out. I’ve always wanted a man who was more interested in my mind than my body and let’s face it, the last 8 years haven’t been kind to my body. Now I just hope life isn’t so cruel, that I meet the man of my dreams and he’s a Neurosurgeon.

Wouldn’t that be ironic…

Because we all know surgeons are “cutters”. Cutters like to cut!

No-one’s cutting into my brain until I’m no longer using it! All the careers I’ve had I can no longer do. Organisations love my knowledge and experiences, but no one wants to pay for this wisdom I have. They all expect I’ll impart this wisdom for free, because I’ve seen as some scourge on the community and it’s how I can give back to the community.

So while I’m not ready to give up and die, I don’t know what I’m living for. Does that make sense? I’m working that out!

Reassessing…

Life

Life!

So, it occurs to me that while I often have a humorous bent and way to write about things, I often write when I’m in the mood to write.

Right now, I definitely don’t much care to write. I feel on top of the usual “seedy” and left eye barely able to see, my stomach is really not helping.

So, it’s probably, with all the thoughts buzzing in my mind the most perfect time to vent my thoughts.

Last Friday, I received some good news. I won my 2^nd appeal to Stupidlink (my friends G-rated term for Australia’s Government Pension Provider) for a debt and it looked like I wouldn’t have to pay it back for the next 25 God damned years of my life.

I know, I hear you saying ‘Get a Goddamned job Cow!’ But it’s not that easy.

Keeping in mind, I have this ‘debt’ because I earn a small pension from my Superfund because my disability is permanent life-long injury and I’m unable to go back to work.

Part of the debt was forgiven due to Stupidlink losing my forms when I declared them, 5 years ago!

And for the last 5 years this ‘extra income’ has allowed me to afford (what I now term as simple luxuries) paying my rent on time.

Keeping the lights on.

Living alone because housemates like to free load, because they think I’ve got a sweet life and they want to hitch a ride.

No seriously, as fucked up as that sounds, it happened!

Apparently eating, I thought I’d be able to keep doing that!

And over weekend I took a deep sigh of relief that for once the Universe was looking after me and I could afford to continue/or return to be able to do all of the above.

Today, I received a letter. I decided to do call straight away to follow it up! The letter was to prompt me to do just that in the hope that I had miraculously come into some income or wealth where I could start repaying more of the debt every fortnight.

Whiskey Tango Foxtrot – I hear myself say?

Um, I mention the letter I received only last Friday (today is Monday), that said debt had been waivered!

There was no note of it on the system and apparently after a call to the appropriate people came back with the information that they have until the 31^st May to appeal the decision and it looks like they will do that!

More questioning on my part and it looks like I have to cry ‘poor’ in another round!

So, feeling overwhelmingly tired and sick to my stomach, I did what I always do when life gets stressful.

I went to bed!

I woke hours later not feeling much better and questioning how I can live on less, what decisions I am supposed to make to make the Government able to cripple me a little more.

Let’s see;

Do I give up my Friday Custard Scroll? That’s $3.30

I really can only tell the week is over when I wrap the week with a coffee and Custard Scroll on Friday afternoon.

That will take a long time at $3.30 per week.

I guess I can live without those things, but they are literally the only nice things I get/do each week to make life in some way more livable.

I’ll just say, it makes me happy!

Is it too much to ask to be a little happy?