October 7, 2024 • 16 mins
In this solo episode, I’m back from a much-needed holiday, and I wanted to give you all an update. The holiday was lovely, but as we all know, life with a disability doesn’t take a break. I faced some challenges—from my beach wheelchair losing power, to my hoist sparking, and my car battery failing twice. It wasn’t the relaxing break I’d hoped for, but I’m sharing the reality of what happened and how I coped.
I also have something exciting to share—🥚there is a little easter egg waiting for you 🥚
Thanks for sticking with me, and I’m so excited to get back on track with fresh episodes coming next week!
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:https://www.icantstandpodcast.com
See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering your questions about what life is like when
you have a disability. My name is Peter, I had
cerebral palsy, and I'm your host. Well we're back. I'm
back from a break. Thank you so much for your patience,
(00:25):
and I'm so happy to be here today. I feel
very lucky to be in your ears. I had a
lovely time away and I thought i'd talk about it
because if you have a disability like me, you'll know
that disability does not take a break, and this holiday
(00:47):
really reminded me of that. I would love to have
even a day away from being disabled, to have a
mental break, but that is not the reality of life.
I went on a beautiful holiday with my parents. We
went to the beach up in Queensland. The heat really
(01:09):
helped with my pain. I felt like a different person,
but lots of things also were super challenging, and the
holiday glow has certainly faded already. I had not planned
to do a chatty solo podcast after I returned home,
(01:29):
but so many things happened that I felt like the
podcast wrote itself at this point. This year has been
a really rough year, I know for a lot of people,
and it has been super challenging for me to get
me through it. I was often fantasizing about jumping in
(01:50):
my beach wheelchair and just going along the beach, hearing
the waves, having nothing to do, and just being in
my own hair with no anxiety. So when we finally
got there, I was so eager to get into that
wheelchair and get covered in sand. But you might have
(02:13):
seen I posted on my Instagram my wheelchair battery just
it looked full when we went off and left where
we were staying off to the beach, but it basically
flattened itself from the time we left to the time
(02:33):
we got to the beach, which isn't a very far distance,
so I could see the beach, but I didn't get there.
I had to quickly turn around and get back into
my other wheelchair as the battery was flat on my
beach wheelchair, which sitting here now doesn't sound like a
(02:54):
very big deal because things happened, it had been left
for many many minus, but I just really needed to
get on that beach. Patience is virtue, don't they say?
And boy, oh boy, am I always taught about patience.
So we stuck it on the charge and left it overnight,
(03:16):
and we did the same thing the next day, and
it did the same thing. The next day. The battery
just dissipated and I had to turn around. Luckily, I
was able to use my NDIS funds and buy a
new charger for the wheelchair, but it was a good
week before that arrived, so patience, patients, patience. The next day,
(03:44):
the lift in our building decided to not work, so
we were stuck in our apartment for only a few hours,
but it was sort of feeling like the holiday hadn't
really started yet. My anxiety was super high, and you know,
I just it's really tricky to relax when you keep
(04:05):
thinking what's going to happen next. Thankfully, eventually life did
calm down and I had about two weeks where not
much wrong really happened. I mean, there's always a few
bits and pieces, but we managed and it was a
lovely time and I really needed it. I slept a
(04:27):
lot and ate too much food. So we got home
last Tuesday and my car was parked in the long
term car park at Melbourne Airport. We arrived it was
about four o'clock in the afternoon it was pretty cold
for people who had been in Queensland sun for three weeks,
(04:49):
and my car battery was flat. You know, initial panic
anxiety risen again, but we called the RACV and they
came and jump started the battery while we were waiting
for the ROCV. I just want to give a shout
out to Melbourne Airport. At the long term car park,
(05:11):
they have bus terminals and the bus terminal had a heater,
so I was very happy sitting in the bus terminal
inside out of the weather with the heater on. That
was a real pleasure and particularly for someone who's disabled,
it was just lovely to at least be warm and
(05:32):
feel safe while I was waiting for the IRACV. The
IRACV has jump started the battery and I was able
to go back to Mum and Dad's that night. As
I was getting into bed that night, I had given
myself a shower, put my foodjums on, brush my teeth,
and I was getting into bed and I have a
(05:54):
charging point over my bed at my parents' place, and
the hoist spar and smoke came out of the hoist.
This has never happened to me before. I have been
using hoisting systems for at least twenty years, a very
very long time and or more. That really ages me.
(06:19):
But it's just one of those things. I felt really
scared and the definition of vulnerable because I knew, well
I didn't know, but me being an anxious person, I
didn't know whether there was going to be a little
fire start in the roof. And I was so uncomfortable
(06:43):
with the thought of having this hoist above my head
all night, having to go to sleep all night with
it above my head. So I did that panicked yell
that unfortunately I've now done twice this year, once when
I fell on my face in my frontyard and blood
when everywhere. That's another story which is in the feed.
(07:06):
But I had to do that really scary yell because
I thought the hoist was going to catch on fire.
Mum Dad removed the hoist and put it in the bathroom,
but it meant that I couldn't independently get up and
go to the loo that night. So the next morning
we called for the hoist to be emergency emergency serviced,
(07:30):
which they did. Hols are always great to temporary fix. Unfortunately,
the whole track system has to be replaced so I
put in a request for the NDAs to try and
help me to try and get this done. But yeah,
we'll see how long that takes. And with the changes
(07:51):
to the NDAs, it's always a bit of a fear.
Hopefully we can get it fixed. Because while it's not
in my you know, in my home, it's at mom
and Dad's. It's just, you know, it's really important that
I'm able to visit them, use the bathroom, have a
shower if I need to, or for me to get
(08:13):
respite for myself as well, because I don't use support
workers in my day to day life when I live
independently at home, so when I do need a rest,
I do occasionally go to Mom and Dad's and they help.
So that hoist is really really important. So I will
keep you updated on the NDIS and how we go
(08:36):
on getting that truck system replaced. And then later that morning,
my dad took the seat out of the car so
I could drive my car again home. We found out
that the battery was flat in the car again, so
we called the RACV replace the battery in my car.
(08:57):
But apparently something in the conversion, because my cars converted
that allows me to drive it something in the conversion
is leaking, leaching the battery, so I have to get
my car serviced as well. At some point in the
background of all this, I also knew that there might
have been an issue at my house. I wasn't able
(09:19):
to access a few things on my phone via an app,
so I had a feeling that the house had no power,
and I'd been away for three weeks, so I was
hoping that didn't mean that I had to throw out
every single thing in my freezer. But I was aware
that I probably wouldn't be able to open the gate independently.
(09:41):
So after we put the new battery in the car,
my dad and I drove in convoy. We arrived at
my house. My dad had thought to bring a ladder.
He jumped the fence because in fact my gate wasn't
working I wouldn't have been able to go into my
house myself without some help, and he had to reset
(10:03):
the gate in the fuse box. Something had happened. So look,
I don't know what happened. I presume a storm or something,
but yeah, that day, I was also supposed to have
recorded with two people for the podcast, so I had
to obviously cancel those because I wasn't too sure whether
(10:25):
my house would have power to enable me to record
the pod, so I have to reschedule those at some
point as well. And then the next day I went out,
my car thankfully started, but there is now something wrong
with it and it won't properly go into reverse. I
(10:46):
have to put it in neutral first and then put
it in reverse, go back and forth between the gears
before it actually registers and goes into reverse. So just
a lot of things seem to be happening. I don't
know whether it's retrograde, if that's a thing. My life
seems to be perpetually in mercury retrograde. But the holiday
(11:08):
glow has certainly dissipated. And this is absolutely, without a doubt.
The hardest thing for me about being disabled is the
fact that the things I rely on when they break down,
it feels catastrophic. My anxiety goes through the roof, and
(11:31):
I feel super dupar unsafe. It's the unpredictability of even
if you get things serviced religiously on time and maintain
things really well, because a lot of these equipment, this
equipment is really complicated, things are bound to break down,
(11:53):
and that's the stuff when I feel out of control.
As a confessed control freak, I find it's super duper difficult.
I know I've been repeating myself in this episode, and
it's you know, I'm not gonna lie. It's basically me
just venting in your ears. But I think it's important
(12:14):
to sometimes just be super honest about what life can
be like when you have a disability. The stuff that's
unpredictable and the stuff I can't control is absolutely the hardest.
I wonder if you feel the same way, So sometimes
(12:35):
you just have to take it day by day. I
have a massive wak ahead. They've also now closed my
street for emergency gas works. They didn't tell me that,
so I'm not too sure whether I can leave my
house this week, but we'll find out. It's all in
the Chronicles of being Peter makes me laugh when people
(12:56):
ask me whether I've been on a date lately, It's like,
when do you think I would have the time or capacity?
But never mind. As a little easter egg at the
end of this episode, for those of you who have
stayed on this long and listen to me blab, I
want to tell you something that I haven't spoken publicly about.
(13:18):
Yet I am working on a new show, a new podcast.
I'm not too sure when it's going to come out.
It could be in the next two weeks, it could
be in the next month, but very shortly and very soon.
It is chronicling something very important and private in my
(13:40):
life that I feel ready to now share with you
that I have been dealing with for a year. And
I'm really excited to hopefully help people better understand or
make you feel seen and understood, because I have never
(14:01):
really had much experience hearing somebody's experience in this area
of life with the disability. So I am very excited
to share that with you. So if the podcast feels
a little haphazard, it's because it is. I'm trying to
be a graceful swan, but underneath the water, I'm really
(14:26):
peddling like mad, trying to keep everything afloat. Hopefully I will.
But thank you so much for bearing with me, letting
me have a break from the podcast. Thank you for
those of you who have messaged on Instagram to see
if I'm okay. I'm really okay. You know, I'm very lucky.
(14:49):
I have a lovely life, but it doesn't mean that
we don't face challenges right. Thank you for listening to
me Ramble Fresh I Can't Stand Podcast episodes will start
next week. I have recorded two other interviews last week
amongst the chaos, so we will be back on track
(15:10):
next week. I'm so excited to share them with you.
Thanks so much for listening. If you want more of
my chaotic life, you can always follow me over on Instagram.
My handle is at Peter hook Oh. You can send
me an email I Can't Stand Podcast at gmail dot com.
Thanks so much for listening. Until next week, have a
(15:32):
good one guys bye. I would like to respectfully acknowledge
they will wondery and bunner wrong people of the call
and nation of which I record the podcast today, and
I pay my respects to both elders past and present,
along with and especially to those in the First Nations
(15:56):
communities who are disabled themselves
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering your questions about what life is like when
you have a disability. My name is Peter, I had
cerebral palsy, and I'm your host. Well we're back. I'm
back from a break. Thank you so much for your patience,
(00:25):
and I'm so happy to be here today. I feel
very lucky to be in your ears. I had a
lovely time away and I thought i'd talk about it
because if you have a disability like me, you'll know
that disability does not take a break, and this holiday
(00:47):
really reminded me of that. I would love to have
even a day away from being disabled, to have a
mental break, but that is not the reality of life.
I went on a beautiful holiday with my parents. We
went to the beach up in Queensland. The heat really
(01:09):
helped with my pain. I felt like a different person,
but lots of things also were super challenging, and the
holiday glow has certainly faded already. I had not planned
to do a chatty solo podcast after I returned home,
(01:29):
but so many things happened that I felt like the
podcast wrote itself at this point. This year has been
a really rough year, I know for a lot of people,
and it has been super challenging for me to get
me through it. I was often fantasizing about jumping in
(01:50):
my beach wheelchair and just going along the beach, hearing
the waves, having nothing to do, and just being in
my own hair with no anxiety. So when we finally
got there, I was so eager to get into that
wheelchair and get covered in sand. But you might have
(02:13):
seen I posted on my Instagram my wheelchair battery just
it looked full when we went off and left where
we were staying off to the beach, but it basically
flattened itself from the time we left to the time
(02:33):
we got to the beach, which isn't a very far distance,
so I could see the beach, but I didn't get there.
I had to quickly turn around and get back into
my other wheelchair as the battery was flat on my
beach wheelchair, which sitting here now doesn't sound like a
(02:54):
very big deal because things happened, it had been left
for many many minus, but I just really needed to
get on that beach. Patience is virtue, don't they say?
And boy, oh boy, am I always taught about patience.
So we stuck it on the charge and left it overnight,
(03:16):
and we did the same thing the next day, and
it did the same thing. The next day. The battery
just dissipated and I had to turn around. Luckily, I
was able to use my NDIS funds and buy a
new charger for the wheelchair, but it was a good
week before that arrived, so patience, patients, patience. The next day,
(03:44):
the lift in our building decided to not work, so
we were stuck in our apartment for only a few hours,
but it was sort of feeling like the holiday hadn't
really started yet. My anxiety was super high, and you know,
I just it's really tricky to relax when you keep
(04:05):
thinking what's going to happen next. Thankfully, eventually life did
calm down and I had about two weeks where not
much wrong really happened. I mean, there's always a few
bits and pieces, but we managed and it was a
lovely time and I really needed it. I slept a
(04:27):
lot and ate too much food. So we got home
last Tuesday and my car was parked in the long
term car park at Melbourne Airport. We arrived it was
about four o'clock in the afternoon it was pretty cold
for people who had been in Queensland sun for three weeks,
(04:49):
and my car battery was flat. You know, initial panic
anxiety risen again, but we called the RACV and they
came and jump started the battery while we were waiting
for the ROCV. I just want to give a shout
out to Melbourne Airport. At the long term car park,
(05:11):
they have bus terminals and the bus terminal had a heater,
so I was very happy sitting in the bus terminal
inside out of the weather with the heater on. That
was a real pleasure and particularly for someone who's disabled,
it was just lovely to at least be warm and
(05:32):
feel safe while I was waiting for the IRACV. The
IRACV has jump started the battery and I was able
to go back to Mum and Dad's that night. As
I was getting into bed that night, I had given
myself a shower, put my foodjums on, brush my teeth,
and I was getting into bed and I have a
(05:54):
charging point over my bed at my parents' place, and
the hoist spar and smoke came out of the hoist.
This has never happened to me before. I have been
using hoisting systems for at least twenty years, a very
very long time and or more. That really ages me.
(06:19):
But it's just one of those things. I felt really
scared and the definition of vulnerable because I knew, well
I didn't know, but me being an anxious person, I
didn't know whether there was going to be a little
fire start in the roof. And I was so uncomfortable
(06:43):
with the thought of having this hoist above my head
all night, having to go to sleep all night with
it above my head. So I did that panicked yell
that unfortunately I've now done twice this year, once when
I fell on my face in my frontyard and blood
when everywhere. That's another story which is in the feed.
(07:06):
But I had to do that really scary yell because
I thought the hoist was going to catch on fire.
Mum Dad removed the hoist and put it in the bathroom,
but it meant that I couldn't independently get up and
go to the loo that night. So the next morning
we called for the hoist to be emergency emergency serviced,
(07:30):
which they did. Hols are always great to temporary fix. Unfortunately,
the whole track system has to be replaced so I
put in a request for the NDAs to try and
help me to try and get this done. But yeah,
we'll see how long that takes. And with the changes
(07:51):
to the NDAs, it's always a bit of a fear.
Hopefully we can get it fixed. Because while it's not
in my you know, in my home, it's at mom
and Dad's. It's just, you know, it's really important that
I'm able to visit them, use the bathroom, have a
shower if I need to, or for me to get
(08:13):
respite for myself as well, because I don't use support
workers in my day to day life when I live
independently at home, so when I do need a rest,
I do occasionally go to Mom and Dad's and they help.
So that hoist is really really important. So I will
keep you updated on the NDIS and how we go
(08:36):
on getting that truck system replaced. And then later that morning,
my dad took the seat out of the car so
I could drive my car again home. We found out
that the battery was flat in the car again, so
we called the RACV replace the battery in my car.
(08:57):
But apparently something in the conversion, because my cars converted
that allows me to drive it something in the conversion
is leaking, leaching the battery, so I have to get
my car serviced as well. At some point in the
background of all this, I also knew that there might
have been an issue at my house. I wasn't able
(09:19):
to access a few things on my phone via an app,
so I had a feeling that the house had no power,
and I'd been away for three weeks, so I was
hoping that didn't mean that I had to throw out
every single thing in my freezer. But I was aware
that I probably wouldn't be able to open the gate independently.
(09:41):
So after we put the new battery in the car,
my dad and I drove in convoy. We arrived at
my house. My dad had thought to bring a ladder.
He jumped the fence because in fact my gate wasn't
working I wouldn't have been able to go into my
house myself without some help, and he had to reset
(10:03):
the gate in the fuse box. Something had happened. So look,
I don't know what happened. I presume a storm or something,
but yeah, that day, I was also supposed to have
recorded with two people for the podcast, so I had
to obviously cancel those because I wasn't too sure whether
(10:25):
my house would have power to enable me to record
the pod, so I have to reschedule those at some
point as well. And then the next day I went out,
my car thankfully started, but there is now something wrong
with it and it won't properly go into reverse. I
(10:46):
have to put it in neutral first and then put
it in reverse, go back and forth between the gears
before it actually registers and goes into reverse. So just
a lot of things seem to be happening. I don't
know whether it's retrograde, if that's a thing. My life
seems to be perpetually in mercury retrograde. But the holiday
(11:08):
glow has certainly dissipated. And this is absolutely, without a doubt.
The hardest thing for me about being disabled is the
fact that the things I rely on when they break down,
it feels catastrophic. My anxiety goes through the roof, and
(11:31):
I feel super dupar unsafe. It's the unpredictability of even
if you get things serviced religiously on time and maintain
things really well, because a lot of these equipment, this
equipment is really complicated, things are bound to break down,
(11:53):
and that's the stuff when I feel out of control.
As a confessed control freak, I find it's super duper difficult.
I know I've been repeating myself in this episode, and
it's you know, I'm not gonna lie. It's basically me
just venting in your ears. But I think it's important
(12:14):
to sometimes just be super honest about what life can
be like when you have a disability. The stuff that's
unpredictable and the stuff I can't control is absolutely the hardest.
I wonder if you feel the same way, So sometimes
(12:35):
you just have to take it day by day. I
have a massive wak ahead. They've also now closed my
street for emergency gas works. They didn't tell me that,
so I'm not too sure whether I can leave my
house this week, but we'll find out. It's all in
the Chronicles of being Peter makes me laugh when people
(12:56):
ask me whether I've been on a date lately, It's like,
when do you think I would have the time or capacity?
But never mind. As a little easter egg at the
end of this episode, for those of you who have
stayed on this long and listen to me blab, I
want to tell you something that I haven't spoken publicly about.
(13:18):
Yet I am working on a new show, a new podcast.
I'm not too sure when it's going to come out.
It could be in the next two weeks, it could
be in the next month, but very shortly and very soon.
It is chronicling something very important and private in my
(13:40):
life that I feel ready to now share with you
that I have been dealing with for a year. And
I'm really excited to hopefully help people better understand or
make you feel seen and understood, because I have never
(14:01):
really had much experience hearing somebody's experience in this area
of life with the disability. So I am very excited
to share that with you. So if the podcast feels
a little haphazard, it's because it is. I'm trying to
be a graceful swan, but underneath the water, I'm really
(14:26):
peddling like mad, trying to keep everything afloat. Hopefully I will.
But thank you so much for bearing with me, letting
me have a break from the podcast. Thank you for
those of you who have messaged on Instagram to see
if I'm okay. I'm really okay. You know, I'm very lucky.
(14:49):
I have a lovely life, but it doesn't mean that
we don't face challenges right. Thank you for listening to
me Ramble Fresh I Can't Stand Podcast episodes will start
next week. I have recorded two other interviews last week
amongst the chaos, so we will be back on track
(15:10):
next week. I'm so excited to share them with you.
Thanks so much for listening. If you want more of
my chaotic life, you can always follow me over on Instagram.
My handle is at Peter hook Oh. You can send
me an email I Can't Stand Podcast at gmail dot com.
Thanks so much for listening. Until next week, have a
(15:32):
good one guys bye. I would like to respectfully acknowledge
they will wondery and bunner wrong people of the call
and nation of which I record the podcast today, and
I pay my respects to both elders past and present,
along with and especially to those in the First Nations
(15:56):
communities who are disabled themselves
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