Updates

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.

Another stomach update

I managed 6 months out of hospital with my gut.

I ended up needing to back in again last week because I had terrible pain and reflux again. They are now saying it is constipation again and gas. My Dr thinks I may of been on the same medication for to long and we need to mix them up.

It is also believed a lot of people with charge have problems with the bunch of nerves that works with the gut and more research needs to be done into this area and not just the cranial nerves. Some even need a tube where stuff is flushed to help the bowels move. Some also need a hole stoma. I am hoping I won’t need this but it is possible I may in the future.

I think that more research needs to be done to really know or have any idea of what’s going on. I feel like some people are quick to look for the obvious and not go deeper in to see the hole picture. I am happy I have a great team that is willing to learn and try their best to help me. There may never be one answer but maybe many answers that all fit together like a puzzle. One day it will all come together and I hope it happens soon.

Respecting our personal space

Quite often people with disabilities have to put up with strangers touching their chair or equipment without asking.

This can be annoying because it takes away the freedom and independence that they work so hard to gain.

If people think someone may need help they should ask the person is ok or how they can help. usually people are happy to get help if they are asked.

People also need to remember people with disabilities have spent years getting things right so give them a chance.

Using certain language around disabled people

Quite often in my CHARGE group and in different posts on Facebook and Instagram about the use of different words a lot of people do not like to use certain terms when referring to people with a disability. As a person with CHARGE I feel it is good to think about.

I and many others don’t like the term special needs but lots use it. I prefer to refer to my self as having a physical disability or a complex syndrome. I don’t mind others using that term in reference to a special school or a specific title.

Lots of people also hate when people refer to their kids as bad in my CHARGE group and I get why but we also need to remember that for some people English is not their first language plus translate can sometimes get things wrong.

One of the words I really hate is the R word. I m ok with it in describing a description that is in the medical world like the r in CHARGE is retardation of growth development. When it is used to degrade someone I hate it alot. I also don’t like when people add tard to the end of a word.

A lot of people refer to person first language meaning using words that make the person included not excluded. I think it is good to always use this because you never know how people will feel or act so it is best to act as if everyone understands you.

I feel people deserve respect no matter what.

COVID vaccine my thoughts

Next week Australia will start rolling out the CoVID19 Vaccine which is coming from the UK and the USA.

The roll out will be slow but I am happy we are getting it at last. First priority will be the elderly, disabled and essential workers.

I believe this will greatly help but it won’t fully get rid of it. I think COVID-19 will always be here especially as there are people who can’t have the vaccine for different reasons such as medical and also religous and other beliefs.

I think I will get it but with careful thought from both my gastro team and my GP as i have a tendency to not asorb meds and things properly. Because of this I can have some weird side effects. Also some live vaccines that can give a little of the virus could effect my gut and also my immune system can be sensitive with my gut because of reflux.

I do know though that my specialists will work out the best plan for me. I hope in time we can all return to some form of normality and not have to worry so much about it.

Managing chronic pain

I believe we have finally got to a point where my stomach pains are bearable. it might not always be this way but for now it is.

I am doing well enough to be able to cancel one of my Drs for a while. Things that are working are regular laxative meds and cranial massage. Cranial osteopathy or massage works on the cranial nerves and helps them to work better. My vagas nerve doesn’t work well neither do the nerves between the gut and brain so I require lots of work to keep things working. Sometimes this doesn’t help and the systems just stop anyway. No one knows why this happens but they think its to do with low motility.

Sometimes I find doing things to distract myself from my pain helps too. I think of good things coming up and look forward to them. Examples are respite, seeing friends,a special event or outing or even something simple like swimming. These are things I enjoy and can’t do if I end up in hospital with pain. I think to myself if i want to enjoy these things I need to do these things to keep my self out of there. Things I need to stop are eating and worrying too much. I also need to try stay cool and hydrated on hot days.

Travel during COVID

One thing I miss not doing during Covid is having a holiday. This year I should be going to the USA for my CHARGE Conference. Insteqd it is now online.

Ir is also hard to travel within Australia because border restrictions can change instantly. This leaves NSW.

For these reasons I am hoping to take a driving holiday to the area my dad grew up in to see some extended family and also an old friend that i met in hospital many years ago.

I also want to explore the area as I have not been there since I was about 7. I want to be able to see more of the state I live in.

To go I either need a support worker or one of my cousins that can drive. I also need a car that will fit my wheelchair. I also need a place to stay, a good hospital in case my tummy plays up. This kind of holiday will be easier than an international or interstate holiday because no plane fairs required also I will be around people I know that can come help out if needed.

The hard part will be which way to go using NDIS support workers or family. Family could be better as they know me but I do like a break from them.