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.
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.
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.
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.