So this is going to be an interesting post as I am just starting to feel really well again from Covid and I am starting to realize that fear is just that fear, so I am proactively working on not having the fear or working out where it is coming from and I realize that I have a lot of support that I didn’t realize I had, we see that people need to be aware of this and how important both paid support and informal support is to people.
I have found that the biggest thing that does concern me is that I would run out of money as I haven’t been able to check my internet data and I do have a metered plan, however, I need to be compassionate and realize that I do have a Centrelink allowance coming in and that I am actively looking for a job again as I am well enough to look. It has always been a goal of mine and I must really admit to myself that YouTube and the blog haven’t really taken off in the way I expected it to and that this is a bit of a disappointment.
I am not ready to give up on it, but I feel that with the NDIS reforms, it’s more relevant than ever. I currently have had my support coordinator put in a change of circumstances for me to have much more care and support and I feel that in the long run, this will save me money and that we can get my budget and health long-term back on track as well.
As I do admit that I fell into the trap of not looking after myself and pushing myself and feeling like I didn’t have the money to go to my go so I needed to go to the local bulk bill walk-in clinic and I don’t like doing that as I do get better care from my doctor but if they are going to charge privately I really can’t see how I am going to afford it.
But this is where my care team comes into it in helping me navigate having the funds to be able to go to the doctors, but I do admit that I needed to go to the doctor that day and that we are going to see a lot more of this if the Medicare rebates aren’t adjusted as well. It is expensive to be sick and I didn’t realize until I did the math how expensive it can get, and the NDIS doesn’t pay for what they consider to be medical expenses like going to the doctors they will pay for what is called health-related supports and I get some of my webster packing paid for and some extra support to go to the doctors to be able to pick up my mum to be able to get her to advocate for me and I am considered. “ Higher functioning” and this for my international readers isn’t considered offensive in Australia so I am going to use the term as it’s simply an adjective to describe someone, so we see that this can be an issue because I do what is called, “ masking” this being able to appear normal until I get home, and then I need to have time alone or to just sleep so for me this is being able to suppress ticks and jerky movement, not spending money when needed as well as not speaking up when I am struggling and needing help to do things.
This is due to past relationships with support workers who due to their youth didn’t have the training needed to understand that sometimes you will come across different points of view and that you need to agree to disagree and not get angry at your client.
As this person was younger and had all the virtue signalling markers and I know that I shouldn’t mark them all with the same brush but it happened to be that when I asked her for clarification about what I should be doing about this and how should I take the negative opinions she had of someone I admired ( Dr. Jorden Peterson) and asked her how his opinions are harming people we see that this is where people need to agree to disagree and that people need to be aware that some people are unable to regulate their own emotions and we see that this is something that we need to be aware of if you are supporting someone who has a very different world view from you.
She wasn’t able to tell me how he was harming anyone, and she had clearly only read what she had seen on social media and mostly Twitter. However when you go and look at what is actually happening to him and the types of people he is helping we see that it’s a lot of lost and confused younger people who have been brought up to believe that they are enough and that they should be able to have anything they want without working for it but you do need to be able to work for something and aim for something.
I really regret not talking to her agency about it as I was taken for a ride by this agency, and this is what has made me passionate about having real person-centered advocacy in support. So, using the least restrictive practices but then understanding where these practices have come from and being able to seek out the support to use them, such as me seriously considering going to supported decision making with regards to my finances and stability of care in that I don’t see things clearly at times.
I am still struggling with whether this my disability or an excuse is as well, and it sometimes is an excuse but I am working through that as well, and sometimes what I think is an excuse is a very valid reason and it becomes an interesting argument as well because I do mask and have been able to do things that I need help to do in the past. The past is the past and I haven’t come to accept that past Andrea could do a lot more when it comes to support and that asking for help isn’t deskilling me it’s supporting me to have the energy to do the things that matter to me, and upskilling what I can do.
One thing that comes to mind is cooking, I can cook some simple meals, but I can’t meal plan or predict the amount of food I need to have in the house and sometimes I do get invited to meals a lot and will forget I have food in the fridge. I have heard it called the ADHD tax, but I think it is a tax for anyone with any sort of memory issues and this is where I am applying for much more support.
I am also seeing that with the blog I am getting much more readership up and running when I talk about what is going on in my life so I will be doing that a little bit more as well.
So I am wondering how others are seeing the changes in the NDIS because people need to be aware of the changes we are seeing a lot of changes around the NDIS and it going back to its core, so the core of it was always to give people with a disability a reasonable chance at life more normal and this has been a bit of an issue due to the fact that there was a lot of caregivers and support agencies that came into the industry for all the wrong reasons and they made it harder for the people to get the support they needed including myself.
I do remember having one support worker who thought I was having seizures and my neurologist didn’t see anything if we had gone back to my doctor at the time we would have seen that I actually had something called FND, (Functional Neurological disorder_ and it's is still a question if I have it or not or if it’s part of the shojgrins syndrome and my neuropathy becoming a further issue.
However, I know that those who know me in real life will want me to go and get further tests done but I seem to be well and I have essentially decided and it’s something that took a lot of courage to decide as a person who has several chronic illnesses and lives in chronic pain that for people if I get something that can’t be treated to simply let me go.
I am however second guessing this because I do have a new nephew in the family and that has kept me going and motivated as well. I also didn’t know when the initial reality of him coming into the family was over how to feel, but I feel jealous of my family as I am the only one without a romantic relationship and this is another post as I do see that there has been some complex issues leading to me being late 30s and alone but I am also seeing that people in supported accommodation are actively discouraged from having romantic relationships due to the fact that they are living with others or actively infantized in their actions.
We aren’t not talking about those who have a severe intellectual disability that needs around-the-clock care and won’t ever be able to work or live independently. I am talking about those who could make decisions for themselves despite being disabled or having a mental illness so having the support to make good decisions for yourself and being able to understand the consequences of your actions.
As many support workers that are very well trained and mentored can have this conversation around relationships and dating and even having friends in a workplace or study group or being able to go back to study as well.
This is also something that I am struggling with, but my family has been amazing at getting me out of my own head and into life a lot more as I found that with trying to monetize the blog and YouTube, I was doing the one thing that even google and YouTube say not to I was isolating myself. Well, they say that to not give up your day job and to be able to have a sustainable business before you go full time with YouTube and to understand it and cancel culture and how to avoid it as well.
It’s something that I need to be aware of as well as not infringing on people’s privacy when I am writing about them or if I name them I have express consent to talk about them in writing and I have found that providers appreciated the honesty and the feedback whether it be negative or positive and this is what I see has to keep me safe for cancel culture as well as still being a micro creator, but I would love to be able to bring a support worker on board as I do have it in the back of my mind that I would love to do content creation full time or even a combination of this can consulting as well so I see that the combination of consulting and YouTube could work really well.
But I am also working on getting my health back as well and that needs to be my focus now as well. I hope that when I see my readers in real life again that they can see me happy and healthy again and I hope you enjoyed this snapshot into my life as well. I am looking forward to doing some much more involved blog posts as well when I am well enough to do the research for them as well. As I am finding that recovering from covid is much harder than I expected.
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