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.

Happy new year

Happy new year. I certainly hope this year is better than the last but I think it will be as good as we make it to be. It will still have some bad points especially with the pandemic but I plan to try not to worry about what will happen.

I had a very relaxing Christmas and nye. I got lots of nice things and just relaxed.

My goals for this year are to try not to take everything personally. I need to not worry about everything so much.i hope to stay healthy and keep my tummy working.

I hope to be able to keep doing all the things that I enjoy. While COVID is still around I think it will be limited at times but I will stay positive.

A year in review

We are almost at the end of another year. This year has been different to other years for most but for me you could say it mirrored times when I was much younger.

When I was little I spent many months in hospital with my gut. We had to be careful as any illness could have an impact on my stomach.

So this year for many like me was quite normal but for others it wasn’t.

This year I missed out on lots of things but I was able to keep doing my Lifeskills programmes even during the lock down. I was able to enjoy respite with friends and go on outings with my carers.

I didn’t have a great year with my health but I have so far avoided COVID so for that I am happy. I am also stable for now.

I have not been able to go to my CHARGE conference this year but we did have an online catch up that was good fun.

COVID changed lots of things but it made people change the way they do things. Some of these changes were for the better but some changes made things harder. I had trouble with telehealth with my hearing and my Drs had to do face to face so this was hard in the beginning. My NDIS meeting was done via video conference which didn’t work. When technology doesn’t work it can be hard to do things.

Even though I couldn’t do many things I was at least able to do. Next year will hopefully be much better for everyone because I always believe everyone will have good days and bad days.

The value of the CHARGE community

This year the CHARGE syndrome association is taking a moment to reflect on the last 30 or more years association. It was founded in 1988 by a group of families including mine. We had our first conference in 1994.

Over the years we have supported many families in Australia,NewZealand and south east Asia with recourses and support.

To me being part of the community is an amazing feeling. In our community every one gets your situation and is very supportive. We are like a big family. Every meet up or conference is like a big reunion. We share in the highs and lows. We volunteer our time in different committees.

For me I love being w part of the CHARGE family. I have loved watching it grow from just a few families to the wonderful community we are today. Now every thing is online it is much easier to keep in contact which has been great in the time of COVID. we were able to have video meet ups where even regional families that may not attend our local meet ups can attend. We gave been able to develop and take an amazing online course all about CHARGE syndrome. We have also had support from the worlds top experts and to this day are still learning.

Thanks to all who have got us to where we are today. You are all appreciated and loved very much