Annie in wonderland

 As I write this, I’m feeling a bit tired but reflecting on how I slept reasonably well last night after attending an event. This experience reinforces my belief that staying up later helps me sleep better, and I’ve discussed this with a manager of my housing facility who agrees and will address the concerns of those who are worried about my late-night schedule. I actually managed to sleep through the night, only waking up a couple of times for a quick snack and to adjust the temperature with my electric blanket. Though I’m still dealing with some pain, being tired seems to make it less noticeable. I started writing this before a support shift and am curious about how I’ll sleep tonight, as my week has a basic structure, but my day-to-day life varies significantly based on what I need to accomplish or where I need to go. I did have some coffee in the afternoon because I was tired, and I’m interested to see if pushing myself to the point of exhaustion might help me sleep better. Ton...

 In deciding that I wanted to go back to some level of paid work, I am working on some basic skills. As I have been out of the workforce for some time, I have done some casual work but it’s not enough to have on my resume and it does show me what I hadn’t realized about working when you have a disability and a chronic illness and I now know why there is so many of us in the online world as content creators. It’s that we can work at our own pace. One thing I hadn’t considered is, emotional intelligence at work as I am completely retaining as I can’t stand for long periods so I need an industry where I am not standing all the time. Sleeping through the night is still a challenge for me as  I have seizure-related events called Parasomnias and I get up to eat or drink throughout the night, leading to poor quality sleep, so it's again before I even put a resume together I am looking at the skills I need to be work ready. So that to me is an ongoing list of emotional intellige...

In my last post, I talked about the challenges of staying organized with a disability. It took a different direction than I expected, but that’s okay! Now, I want to focus on the physical items that can help someone get organized with minimal assistance, especially if they’re moving out for the first time. ### Electronic Tools If the person has a smartphone, using a calendar app for appointments, work, or volunteering commitments is a great start. However, phones can be hacked or fail to charge, so having a physical calendar or diary as a backup is essential. These can often be found at newsagents or even given out as Christmas gifts by local pharmacies. I’m also assuming that the person has basic stationery like pens and pencils to write things down. However, in support work, never assume that the person has what they need—always ask to ensure they have the necessary tools. ### Cleaning Essentials For maintaining a clean living space, here are the basics: - **Laundry**: Laundry powder...

   I am starting a new series, and I think it’s going to be highly relatable, for a long time I have suffered from poor-quality sleep, and as you can see from the title it’s going to be a bit obvious to what I am saying.   I have several disabilities and medical conditions, but then there are the things that I can control, as I am in a Sil house ( supported independent living), and due to me essentially being in a granny flat the first thing I can’t control is who is on a sleepover and if they come down or not as I do have some bad habits that I need to get out of, one has my phone in my room but I didn’t realize I have sensitive hearing and I can hear support staff doing final checks both upstairs and next door. I am trying to not reveal any sensitive information but it factors into why I am not sleeping well and having discussed this series with the head support worker we feel that it's ok to talk about the behaviour's of staff so people can see its impact and we can wo...

### The Power of Lived Experience: Bridging the Gaps in Disability Care In my recent video [insert link to the video], I touched on the importance of lived experience and the need for diverse voices in conversations about disability. But beyond that, there's a pressing need to address the realities of government care programs like the NDIS, the perspectives of providers, and how we can all work together to ensure that person-centered care truly supports not just the individual but their entire support network. **Understanding NDIS Cutbacks: A Reality Check** With recent cutbacks to the NDIS, it's more important than ever to be realistic about what to expect from a government-funded care program. The NDIS is designed to bridge the gap between the high costs of living with a disability and what individuals can afford, but it’s not a cure-all. It’s a valuable resource, but it’s one piece of a larger puzzle. As participants and families, we need to manage expectations and understan...

Hey everyone, I may or may not have mentioned this before, but I recently went away for a weekend, and it sparked a new goal in me. I'm now seriously thinking about getting a unit down the coast—maybe in an older building since I live in a regional area. But there's a lot I still need to figure out. First, do I have enough to buy a place? And if so, where exactly do I want to buy? Would I rent it out or keep it as a weekend getaway? I'm leaning toward a unit in a beachfront complex, though it would likely be an older build. There are a few things that are must-haves for me, like a dedicated parking space, a clean pool (and a spa would be nice), a full kitchen, and a bathroom with a proper bath. One quirky preference I have is not having to walk through the lobby with groceries all the time, so a separate entrance for residents would be ideal. However, I do like the idea of having a front desk and housekeeping services available. But how much would that cost? How would I fur...

 Here's an updated version of your post, incorporating your preferences: --- **Weekend Reflection and Moving Forward** As I write this first draft, it's my first night back from a weekend away. I did fall into some old habits, such as blaming others, but I recognize that and can work on those issues. It's time for me to reassess my strengths and focus on what I can change in my life. One thing I can change is spending more time offline. Another is cutting back on buying unnecessary clothing. I've also realized that my NDIS funding might be at risk, so I need to be more mindful of my actions in the house. With NDIS reassessments being a topic we're all discussing, I need to ensure that I’m prepared, as I don't want to risk having to move or find a rental on my own. I'm also trying to figure out what's going on with my YouTube channel. My subscriber count recently dropped from 109 to 94, which was a bit disheartening. However, I need to focus on my long-te...

https://youtu.be/SRJJHfzbDfE?si=V1BcFy2YD__4yhMZ In my latest vlog, I share the excitement of a weekend getaway—something that every girl needs once in a while! This wasn’t just a day trip; it was a full-on girls' retreat, filled with fun, relaxation, and adventure. What made this trip even more special was that we spent our own money, proving that you don’t need NDIS funding to treat yourself to a refreshing break from the usual routine. The getaway was a perfect reminder that, sometimes, all you need is to pack a bag, grab a friend, and set off on an adventure. We explored new places, enjoyed great food, and indulged in some much-needed downtime, all while bonding and creating memories that will last a lifetime. Whether it’s discovering hidden gems or simply relaxing in a new environment, the trip was a beautiful blend of travel and friendship. This weekend escape was a testament to the power of spontaneity and independence. Living with a disability doesn't mean every experie...

 Going on a day trip with a group through the NDIS is an exciting opportunity to explore new places and connect with others. However, it's crucial to remember that being part of a group also comes with responsibilities, especially when it comes to respecting the people around you. Whether you're new to NDIS group outings or a seasoned participant, here are some key guidelines to ensure everyone has an enjoyable and respectful experience. 1. Turn Up on Time Punctuality is a simple yet essential way to show respect for others. Arriving on time not only shows that you value the time of your support workers and fellow participants but also helps ensure the day runs smoothly. Late arrivals can cause delays, affecting the entire group and possibly shortening the time you have to enjoy the planned activities. 2. Personal Hygiene Matters Before heading out, make sure you've taken care of your personal hygiene. Having a shower and wearing clean clothes are basic courtesies that make...

Hello, everyone! I wanted to take a moment to update you on what’s been happening in my life lately. A lot has been going on, and I’ve been reflecting on some of the changes, challenges, and growth I’ve experienced. ### Embracing Change and Finding Stability Over the past few months, I’ve been navigating significant changes in my routine and support structure. One of the biggest adjustments has been finding stability in my day-to-day life. As many of you know, living in a Supported Independent Living (SIL) home comes with its own set of challenges. I’ve learned that having a stable roster and a well-mapped-out day, week, and month is crucial for my sense of safety and well-being. When everything is predictable, it’s easier to relax and focus on personal growth. After all, if I don’t feel safe at home, where will I ever feel truly safe? ### Improving Health and Setting Boundaries I’m happy to report that my health has been getting better. It’s been a long journey, but I’m seeing positiv...