NDIS round 5

Because of Covid I didn’t use as much of my NDIS funding as I had hoped. This meant that I still had a lot left over by the time I had my meeting.

This year a managed to get a two year plan with lots of money wich will help me alot. The next two years I plan to do lots of things with friends using my support workers. I also plan to try taje a few small trips but that all depends on COVID and any restrictions.

I also decided to get a new support coordinator as the other one basically never even made contact even for my meeting. I decided to go through my main service provider and I love having agreat coordinator who not only talks to mum but also talks to me.

Now my health is much better I am looking forward to being able to do things most normal people can do.

Lock down and catch up.

Sydney and most of New South Wales went into a 4 month Covid lock down. Unlike last years lockdown this one was harder. Last year some essential services such as disability programmes were allowed to stay open this year everyone had to close.

I was lucky while many respite places closed mine was able to stay open as we share with lifeskills people respite is mostly on the weekends. On the times I did have respite in the week it was with the same people and no new clients coming or going.

I was also able to do Lifeskills online 5 days a week as AFFORD was also closed. I did find i got very depressed and down but having respite and being with my friends there helped me a lot.

I also had my ongoing pain episodes wich also started including some weird things where I would just drop. Many tests were done but COVID made it hard because they couldn’t scope me. I ended up having emergency surgery about a month ago where they repaired my hiatus hernia and had to take my colon down from inside my diaphragm. They also removed alot of adhesions.

This has mostly helped my pain and the weird spells. They say I will always have problems but hopefully far less than before. it has also helped my anxiety and OCDS. i am much calmer now but I still have my moments.

I am hopeful now everything will go smoothly from now.

Coping in challenging times

There is no denying that the last year and a half has been challenging for many people. Here is how i cope.

First I try to learn everything I can but also try to distance my self from the news. I find with the pandemic theres all kinds of views and ideas and while I respect them all. Some get quite heated so I try to just stay away.

Ido neuro feedback every few months to help keep my anxiety and ocds down. I find it totally relaxing and helps me to keep on track.

I find listening to the calm app helps and I also like drawing and colouring.

COVID lock down

Well it is over a year later and we are in another COVID lockdown.

This year I feel less anxious because I am still able to attend my lifeskills programme as it is an essential service. I can also still do respite. Being able to still do some of my normal stuff helps me.

The new strand out is very scary as it is spread more easily but I get the second vaccine in over a week.

Goldcoast holiday weekend

On the June long weekend I went to the golcoast to escape the cold weather.

On the Saturday I went to Seaworld. It was fun it has seals dolphins rides and more. I went on the vortex wich spins you upside down forward and backward. The sensation felt like i was going to fall tight out even though I was strapped in the seat. I also was very shakey and had a sore tummy.

Sunday I went to movie world. It was fun i went on a ride where you go up and down. This was better than the vortex.

Monday I went on a train to Brisbane and explored around the river. It was lovely there. I also caught the light rail into surfers paradise and wandered around.

Tuesday I came home. I had a lovely time I love to get away sometimes and see different places. COVID is still around but it is good to be able to get away when we can. I believe there will always be outbreaks but if we are are careful hopefully things will stay under control.

On line charge simposium

This year instead of the normal conference in the USA the CHARGE foundation are going online.

With COVID and travel restrictions in many countries they felt it was easier and safer to do it online.

I like this option because it gives me a chance to see everyone and catch up on latest information with out having to travel with all the COVID things in place.it is going to be fun the time difference will be hard but I am looking forward to it.

Tube change

Last week i had my gj tube changed. The gj tube is a two in one tube where one section goes into the stomach and the other goes in to the jejunum small bowel.

I need this tube because my gut doesn’t function properly. The tube is done under anaesthetic in the X-ray department with imaging.

This time I went in at 7am and was out by 1pm. It went very good and I didn’t even need to stay over night. Now it will stay in for another year.

My holiday

Last week I went on a lovely little holiday to the central west of New South Wales to see my dads home town.

The weather was cold but lovely and sunny. I enjoyed seeing the sites and then going to Camberra to see the national gallery.

What I wish people knew and understood about me

Most people know and understand me well but some people don’t realise things. Here is a list of things I wish people knew.

First I am intelligent and am able to understand most things as long as people look at me directly and speak loudly and clearly.

I wish people knew that even though I I sometimes have anxiety and meltdowns, I am not doing it on purpose.

I wish people understood my gut problems aren’t just from anxiety or ocds. I have lots of metabolic issues that courses pain and reflux.

I wish people understood that it is not a pity or sad that I am this way. It happened and can happen to anyone.

Mostly people are great but there will always be some who don’t completely get it and that is ok. That is why I try to help people to know more


Last week I had my Covid shot. The vaccine was ok but I had very sore legs the next day. This is normal.

I also saw my tummy doctor who wants to do an endoscopy when they change my tube. She says right now it is about monitoring and management. My pain specialist was happy with me and said I only need to see him as needed.

Lately I’ve had some problems with my vision getting worse. I have been having trouble recognising faces and places. My depth perception has also gone off. Yesterday I went to my eye doctor. My vision is the same but my cateract in my left eye has grown a bit while the one in the right eye is at the bottom of the lens and is ok. I need to go back in a year so they can monitor it.

Tomorrow I have my regular hearing test that I think will go well. My hearing is pretty stable these days but we still like to watch it.