“I am interested in not only how it impacts your daily life physically”
I wake up, exhausted. I’ve slept poorly. I have a lot to do and my back hurts already. I can’t work, and live off a disability pension. I’m always on the edge of homelessness as the pension barely covers accommodation. I’m on a waiting list for special accommodation, but it’s always another ten years.I am not sure I will live to see the end of that queue.
I’m tired, but I can’t sleep. I can walk, somewhat, but struggle going up or down. My knees were injured in the first flood I lived through. Had it happened a few years earlier, I would have been fine, but all my savings from my working years are gone and the medical help available is sliced thinner and thinner.
“How are you building friendships and relationships?”
Having had little sleep for years, less since the terrible flood, I can’t say I have had much ability to maintain friendships. If you can’t sleep, you have trouble with memories, you are ill tempered, you repeat yourself and are dull, and sex?
If you are a woman, you can still get it, but a disabled man who cannot work has ceased to exist. I was warned in formal counselling that I would have to get used to celibacy because women will not associate with men like myself. It’s a very hard thing to deal with and a lot of young men don’t.
When they wake up to it, they get out the only way they can, it might be sleeping pills and whiskey or just a sharp knife, but they remove themselves from life as they were removed from sexuality.
There are some sex workers who deal with the very disabled but for most of us, you either find something else to focus on (and internet porn is fabulous stuff) or you go under. The strange thing is, sometime porn is actually recommended for pain - it does increase tolerance to it.
The pain is worse when you try to concentrate, and when you try to sleep.
“How do people treat you?”
Mostly they assume you are just whining. I had a crushing pain in my left upper arm that lasted for two days. I called an emergency help line and was advised to call an ambulance. I was terrified I would be told I was fine and just whining. I staggered to a GP. They examined the oxygen content of my blood, which was far too long, and checked the machine on themselves and then me, then themselves, then me. They told me I would be getting an ambulance to hospital.
I arrived sucking down the best oxygen of my life, feeling fantastic and confused - i presume I had been oxygen starved before. My heart was examined and it seemed fine, and I was told I was just whining and I shouldn’t have called the ambulance.
I tried to point out I never did that - but it didn’t matter. The doctor was gone. It had taken five hours of waiting in the emergency ward of the hospital for me to be told something that made no sense but left me feeling miserable.
I have had trouble with my heart before, and records were kept of it at a medical centre, but they never let me access them - such records are the property of the medical centre - so the arrhythmia history and family trouble were invisible.
I had a medicine for my back which was effective, but it was recalled because it was killing people. It caused heart failure - and yes, my heart troubles began when i was using it, back around 2000.
“Has it changed you as a person?”
I have little to do with the person I was. In some ways, that’s enriched my life - I have had time to listen deep to the world and my own heart, and can appreciate tiny moments of joy. I am less worried by death, my own and that of others.
But I do miss the way I used to laugh, and the way I used to make others laugh, and the way I used to be able to dance, even if, at best, I was graceless.
There’s no money for the government for people like us, because the big companies no longer pay taxes. A government tried to change that here, and it was swatted like an elephant crushing a beetle.
There’s no money for the government, so there are no services for the little people. People like me.
I try to work around it. Poverty can be self reinforcing. I live in a bad neighbourhood, so I have bad neighbours. I tried studying, but the barking dogs next door would set off my medical problems. I did my best but failed one exam, and then my health got even worse, and that was that. The irony is I now have good neighbours, after five years, but my home was flooded. I was building up a little steam on my blog, getting the hang of things, getting ready to try recording videos - and now I live in a very noisy, cramped room, borrowed from my mother while she prepares to sell her house.
I’m here because I’m in pain, and if I could earn money, I could be in less pain. Painkillers are a big issue in poor neighbourhoods - the junkies sell them to relieve another sort of pain, so i haven’t had proper pain relief since I moved here. They are too scared to give patients like me what they need.
There’s no centralised database for medical records, and after years of repeating myself, I am tired of explaining to doctors what a parotid tumour is or why removing one causes chronic pain in some patients or why my back hurts or why my knees hurt.
Whenever I see a doctor, it’s like dealing with someone with Alzheimer’s. The medical history of each patient is kept within a medical centre and patients have no legal right to it, and even if the centre is generous, the doctors don’t usually keep good records.
I worked in a call centre doing tech support and i know just how much difference good record keeping and a central database could make - but I’ve made no dent in what actually happens in Australia.
I suspect doctors are afraid that if records are kept, people will see they aren’t really very good at their jobs.
My Trigeminal Neuralgia was diagnosed by a GP visiting from Kenya. To get it formally confirmed, i had to wait for years to see a specialist - who then left the country, taking his records.
He wrote a report to my gp at the time, but I was never given a copy. The gov’t had a copy but they destroy their records because reasons.
You have to start again, as if no-one had ever seen you before, every time you deal with them. A friend has an autistic child, and he will never get better, and he will never be able to cope with living alone, let along working, but every few years she has to re-apply for him because the government says it is looking after us but the truth is it puts up hurdles and hopes you trip because if it trips, you disappear off those records and they can announce they just saved a million dollars but the truth is those disabled who can’t get a pension either commit crimes or kill themselves.
Recently, the government announced it would have a meeting to discuss our issues. It was announced via mail - despite the fact they have my email address, and my telephone number.
The date of the meeting? The day after the letter arrived.
I, like many disabled people, have trouble travelling. I might have made it with notice by making sure I had sleeping pills and painkillers for a few days - i can only ever get a few days worth, because they know people like me kill themselves.
So I need preparation time, more than a week ideally as it takes more time to see a doctor when you are poor - the rents have driven us into rural areas and the waiting time is about a week for a GP.
And some days I can’t walk and I need to arrange a lift.
I can’t see any way that that meeting was anything more than a show - you weren’t supposed to make it - and the gov’t would hold the meeting and point to the empty seats and say “see - they are faking it - if they were real, they would have come - but they can’t be bothered even turning up”.
The odd thing is I have found several treatments but there are no cures. Some prescription meds work - but the side effects are nearly lethal. One drug is used in the United States - but it’s only somewhat legal there and illegal (and expensive) here. It’s called cannabis, and according to several doctors would treat my conditions.
The gov’t regularly announces trials. We will use cannabis according to their rules. They announce the trials. We fill out the paper work… and wait… and wait… and they announce that they cannot have trials because cannabis might be harmful. They tell us we should use other meds. Which are known to be lethal.
Then the doctors and others pester them and they say “we’ll consider it” and like Nixon they hold out a promise a football and Lucy swears this time she’ll let you kick and they will have a trial and you sign all the paperwork and they get you to sign more and more and then.
And years later they say how can they have a trial it’s too dangerous and you are watching people you know dying from the legal meds and you know they are lying now and you are wondering why would they do that and then they announce a fabulous donation (completely no strings) from a pharmaceutical company and you know “ah! so that’s how you play the game”
And the pharmaceutical rep is appointed by the gov’t to a post and they announce they will have a trial but just not yet, when the time is right, when the time is right…