Tummy update

I finally got my tube change the other week. It went great. We found out my gut pain was from my gut not handling me eating so much. With gastro presses, it can flare up so if I want to eat I need smaller volumes.

A work in progress

I think we are all a work in progress. None of us are perfect. My gut pain has come back again and with that came my anxiety and OCDS.

I did improve but as the pain came back I could feel myself slipping back a little bit I just need to keep working at it and remember that no one is perfect. They think my tummy may of slowed down again because I have been eating more.

My tube is also old and yucky. Hopefully, they can fix this without any hospital stays.

Chronic pain

My chronic Tummy pain has started up again i am trying to not let it make as bad as it used to.

I think by keeping my mind off it and trying to focus on other things will help. I hope my tube change on Thursday gives answers

My favourite places to relax

Many people have a space they find it easiest to relax. One of my favourite places to relax is anywhere with water. It can be the beach or even a nice relaxing shower.

In the winter I love to snuggle in my warm bed and read. I love listening to nice soothing music and having a nice massage.

City to surf

On Sunday I did my first city to surf walk with my walking group. Achillies sydney is a walking group for people with disabilities mostly visual impairments.

We walk every sunday around the botanical gardens. A guide takes me and I walk in my walker. When I get tired I sit on my walker and get pushed.

We do different events and usually, I would do the short walk but this time I did one that was 14 kilometres. I mannaged to walk half of it. I love doing this because it gets my excersise up, keeps me fit and i get to see different people.

Genes for jeans day

Last Friday was jeans for genes day. I actually have a genetic disorder. CHARGE syndrome is partly a genetic disorder as in there is a gene but not everyone will have the gene

It is very complex but it isn’t hereditary and is like a pot luck kind of thing. It can also be diagnose clinically. I am clinically diagnosed as there was no gene when I was born.

Over the years as more has been discovered they have changed the way they diagnose it but basically you need to have at least half of the features

I find awareness is a wonderful thing for many different things. The more we learn the more we understand.

Life updates

I thought I would give a life update. I am still doing really well with my health. I did have a couple of winter cold things but I have managed to stay fairly good. I even put on a bit of weight.

I am also back to normal with my daily activities after two years of COVID madness. I am very happy with how things are and am happy. My anxiety and other things are less to.


At the weekend mum and me went to Uluru for 2 nights. We wanted to go somewhere different. Uluru is a big rock in the centre of Australia. The rock is a very special sacred place for many indigenous Australians.

On Friday morning we arrived at the airport where there was a huge line for check-in and people everywhere. After checking in we boarded the plane

When we go there we checked into our room and relaxed. In the evening we had a sunset your. The colours were amazing over the rock. There was food and drinks and we talked to the other people while watching the sunset.

On Saturday we went on a sunrise your. Again the colours were amazing after some breakfast we went for a drive around the rock and a walk to a water hole. We also saw a cave which had paintings it was beautiful. The rock is so big and amazing. No one can climb uluru anymore but you can walk around it. The paths are red and very sandy so hard for a chair.

After that, we had a walk around the town centre at the shops and then relaxed in our room. In the evening we did sounds of silence dinner with the field of the light tour. The dinner was a three-course meal and the lights were an installation of amazing lights We listened to a didgeridoo and someone told us about the stars we see. Being in the middle of no where the sky was bright with stars not like in the city where all the lights hide everything.

On Sunday morning we went on a helicopter ride over the rock. It was amazing. We then went to the airport to come home. Our plane was delayed and we got home at 10 pm.

The weather was beautiful lovely warm sunny days with cool nights. I would love to go back and explore more of the area and look at the area.

Is anyone reading?

Ever get the feeling like you are talking to yourself? I feel like that when I post in here lately. So my question is are people reading? Are you enjoying it?

I write the blog to share my perspective on things, get things off my chest and also spread awareness about CHARGE syndrome. I love to know people are liking what I say and are finding it interesting.

Benefits of respite

For me respite has many good benifits to being in respite. First I get to give my mum a break and some space.

Not only to I get to be with my friends but I get to practice giving people space and doing my own thing.

I also learn independence and get to gain new skills or improve on old ones especially social skills. I have great support workers who help me improve every day.

The best thing about respite is that it is the same house as my life skills programme. This means I can just stay in the same place