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 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.

A Year On: What Have I Learned

Wow, it is hard to believe just over a year has gone since our very first COVID-19 lockdown.

Over the year, we all had to adjust and do many things differently. It has been a difficult time for me, because I do get anxious very easily, but I did learn some things.

First thing I learnt is to adapt to change very quickly. I and many others with CHARGE syndrome need a routine. I think this has to do with being deafblind. During the worst of the pandemic, things could change every hour. It was hard, but I read and learned as much as I could about the virus and this helped. With this also came being patient. Some times people knew just as much as I did so I needed to wait.

I also learned to appreciate the little things more. I have always done this, but when you are only allowed to go on outings to outside places, some would be the same, so I would find one new thing and take a photo then I would edit it at lifeskills.

I also realised that there is always another way to do things and I learned these ways quickly.

I believe COVID-19 has helped me to improve slightly as a person, but only with the help of my family, friends and support workers. These people supported me to be a better person and I love them all.

Covid vaccine

Finally the Covid vaccine has hit Australia. I am getting mine on the 13th of April as my Drs feel it will be good for me with my tummy. My gastro dr feels that Covid could impact other organs wich we don’t want. She is also worried about further gut and bowel problems so wants me to have it ASAP.

I feel that it is important for people to make the choice but I do feel that anyone that is at risk should consider it. Vaccines can be a tricky topic to navigate and care needs to be taken when thinking about the best option.

For me I am happy it is out and that it will hopefully give people a bit more freedom. This won’t mean we can stop doing all the hygiene stuff but we will be a bit more free to do more things.

Covid will always be around just like other things are still around but if we can lessen the impact I am happy with that.

I am getting it done at my local GP who is right across from the hospital so can get there easily if anything happens. Hopefully all will be good and we can all relax a bit more.

Please be aware these are just my thoughts. I am not telling anyone to get it.