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:
Peta [00:00:02] 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 Peta. 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. And I'm so happy to be here today. I feel very lucky to be in your ears.
[00:00:32] 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 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 in Queensland. The heat really 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, but so many things happened that I felt like the podcast wrote itself. At this point. This has been a really rough year. I know for a lot of people and it has been super challenging for me to. To get me through it. I was often fantasising about jumping in my wheelchair and just going along the beach, hearing the waves, having nothing to do. And just being in my own head 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 seen I posted on my Instagram my wheelchair battery, just. It look 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 we got to the beach with it, 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 very big deal because things happened. It had been left for many, many months, but I just really needed to get on that beach. Patience is a virtue, don't they say? And boy, boy, am I always taught about patience. So we stuck it on the charge and left it overnight. 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, patience, patience.
[00:03:39] The next day, 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 had really started yet. My anxiety was super high and, you know, I just it's really tricky to relax when you keep thinking what's going to happen next? Thankfully eventually lifted, calmed 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 to and it was a lovely time and I really needed it. I slept a lot and ate too much food. So we got home last Tuesday and my car was parked in the long term carpark at Melbourne Airport. We arrived, it was about 4:00 in the afternoon. It was pretty cold for people who had been in Queensland Sun for three weeks and my car battery was flat. You know, initial panic, anxiety risen again. But we called the RACV and they came and jumpstarted the battery. While we were waiting for the recovery. I just want to give a shout out to Melbourne Airport at the long term carpark. 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 feel safe while I was waiting for the RACV. The RACV has jumpstarted the battery and I was able to go back to mum and dad's that night.
[00:05:44] As I was getting into bed that night, I had given myself a shower, put my pyjamas on, brush my teeth, and I was getting into bed and I have a charging point over my bed at my parents place and the hoist sparked and smoke came out of the hoist. This has never happened to me before. I have been using hoisting systems for at least 20 years. A very, very long time. And more that really I just me. But it's just one of those things that I felt really scared and the definition of vulnerable because I knew well, I didn't know that 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 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 have now done twice this year. Once when I fell on my face in my front yard and blood went everywhere. That's another story which is in the fade. But I had to do that really scary yell because I thought the hoist was going to catch on fire. Mum and Dad removed the hoist and put it in the bathroom, but it meant that I couldn't independently get up and go to loo that night. So the next morning we called for the hoist to be emergency emergency service, which they did is always great. It's the temporary fix.
[00:07:34] Unfortunately, the whole track system has to be replaced. So I've put in a request for the nurses to try and help me to try and get this done. But yeah. We'll say how long that takes. And with the changes to the NDIS, 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 mum 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 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 mum and dad and they help. So that hoist is really, really important. So I'll keep you updated on the NDIS and how we go on getting that track system replaced.
[00:08:40] 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. But apparently something in the conversion because my car's converted that allows me to drive it. Something in the conversion is leaking, leeching 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 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. 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 the gate in the fuse box. Something had happened. So, look, I. I don't know what happened. I presume a storm or something, but. Yeah.
[00:10:15] That day. I was also supposed to have recorded with two people for the podcast. So I had obviously cancelled those because I wasn't too sure whether 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 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 Mercury, Retrograde, if that's a thing. My life seems to be perpetually in Mercury Retrograde. But the holiday glow has certainly dissipated.
[00:11:11] 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 I feel super duper 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. And that's the stuff. When I feel out of control as a contrast control freak, I find it super duper difficult. I know I've been repeating myself in this episode and it's, you know, I'm not going to lie. It's basically me just venting in your ears. But I think it's important 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.
[00:12:34] So sometimes you just have to take it day by day. I have a massive week ahead. They've also now closed my street for emergency gas works. They didn't tell me that, so I'm not sure whether I can leave my house this week. Google Find out. It's all in the Chronicles of Bang Peta makes me laugh when people ask me whether I've been on a diet lately. It's like, when do you think I would have the time or capacity? But never mind.
[00:13:05] As a little Easter egg at the end of this episode. For those of you who have stayed on this long and listened to me blab, I want to tell you something that I haven't spoken publicly about 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 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 really had much experience hearing somebody's experience in this area of life with a disability. So I am very excited to share that with you.
[00:14:14] 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 pedalling 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 have I'm very lucky. I have a lovely life, but it doesn't mean that we don't face challenges, right? Thank you for listening to my ramble. A 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 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 @petahooke or you can send me an email icantstandpodcast@gmail.com.
[00:15:28] Thanks so much for listening. Until next week. Have a good weekend, guys. Bye. I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nationof which I recalled the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves.
Commentaires