I am sure many people with disabilities has phrases they hate or can’t stand. Here is a list of mine.
First not to offend anyone, I respect all beliefs religious or other wise but it can be annoying when people say i I pray God will make you better or something similar. It is ok if I am sick but if someone prays for my deafness to go away or my tube to get better that can sometimes upset me because I would love to be able to eat, hear and even see normally.
It’s frustrating when people say something with pity like saying they are sorry. I love the kindness but it isn’t their fault that I am the way I am.
I also hate when people usually medical professionals ask where my mum is. I am 36 and thoughI am deaf I do understand what is being said. Yes I need and want her for somethings but if it is how much I eat I can tell you that.
I am afraid COVID may of made a supply shortage with my formular. We order 6 boxes about every six weeks but yesterday they only sent 4 boxes.
With Covid-19’s even though we are out of lockdown and international borders are open there is still a back log of supplies around the world.
If I ran out of formular there is one I could have but if that ran out I think I would need to go to hospital and get some iv nutrition. I hope this won’t happen but it is a real possibility for many like me.
Last year my tummy Dr wanted me to see a neurologist to investigate autonomic nerve problems with my gut. Most people with CHARGE have some type of autonomic nerve disfunctio.
While these settled after my surgerythey thought a baseline was worthwhile especially since I don’t cope well in the heat.
The Dr believes i do have something and has referred me for tests.
Well after two years of trying hard to avoid it I got COVID. I did everything right. I hand washed, sanitised , social distanced and wore a mask where an when ever possible. I also am triple vaccinated.
I was having pain around my tube. It was very hard and lumpy, the bubble was going and I was leaking. I also had dioreah but this is normal when I have my medicine to help me poo. I had been in respite for 11 nights and we did no outings and the only people that came in were our Lifeskills people and the staff.
I went to the hospital for my tummy they found I had a temperature but believed it was an infection. A routine test came back positive for COVID. my gi team were worried about the effects on me.
I was in the COVID ward for 4 days and I did well. I did have to isolate for 2 weeks from Lifeskills but I was ok. I consider my self lucky to have only had a mild case and that no one else around me got it.
I did end up needing my gj tube replaced a week earlier than planned but now I am doing good again. My gi Drs say they can’t say I would of done so well if I had got the earlier strains but we are all very happy.
My support workers are wearing yellow hospital gowns that seem to be triggering my anxiety and PTSD. I think this is because I associate those gowns with painful procedures such as blood pokes, Ivs and operations. I know I need to remember the staff at lifeskills do not have the equipment for those things.
Other triggers are pain , changes in routine or not knowing what is happening. I feel I am much better but I do need to keep working on my self. I also need to remember that I am not perfect but I want to be.
We are in the new year and I am hoping it is much better than the last.
Last year was hard on many people with the lockdown but I managed to have a fairy good year. I was able to go away a couple of times.
I was able to see friends and family and right before Christmas I had a lovely weekend at my auntys new house.
They managed to sort our my pain for the most part. I was able to have my lifeskills online.
This year I am hoping to be able to do everything as normal.
This morning I had my COVID booster. It is supposed to be six months after the last shot but my Drs wanted me to get it earlier.
The boosters are a different vaccine to the one I first got. The only side effects I have so far is a sore tummy but otherwise I am okay.
With the new strain I am worried we could go into lockdown but I am hopeful that we can avoid that with our vaccination rate we can avoid it.
Because of Covid I didn’t use as much of my NDIS funding as I had hoped. This meant that I still had a lot left over by the time I had my meeting.
This year a managed to get a two year plan with lots of money wich will help me alot. The next two years I plan to do lots of things with friends using my support workers. I also plan to try taje a few small trips but that all depends on COVID and any restrictions.
I also decided to get a new support coordinator as the other one basically never even made contact even for my meeting. I decided to go through my main service provider and I love having agreat coordinator who not only talks to mum but also talks to me.
Now my health is much better I am looking forward to being able to do things most normal people can do.
Sydney and most of New South Wales went into a 4 month Covid lock down. Unlike last years lockdown this one was harder. Last year some essential services such as disability programmes were allowed to stay open this year everyone had to close.
I was lucky while many respite places closed mine was able to stay open as we share with lifeskills people respite is mostly on the weekends. On the times I did have respite in the week it was with the same people and no new clients coming or going.
I was also able to do Lifeskills online 5 days a week as AFFORD was also closed. I did find i got very depressed and down but having respite and being with my friends there helped me a lot.
I also had my ongoing pain episodes wich also started including some weird things where I would just drop. Many tests were done but COVID made it hard because they couldn’t scope me. I ended up having emergency surgery about a month ago where they repaired my hiatus hernia and had to take my colon down from inside my diaphragm. They also removed alot of adhesions.
This has mostly helped my pain and the weird spells. They say I will always have problems but hopefully far less than before. it has also helped my anxiety and OCDS. i am much calmer now but I still have my moments.
I am hopeful now everything will go smoothly from now.
There is no denying that the last year and a half has been challenging for many people. Here is how i cope.
First I try to learn everything I can but also try to distance my self from the news. I find with the pandemic theres all kinds of views and ideas and while I respect them all. Some get quite heated so I try to just stay away.
Ido neuro feedback every few months to help keep my anxiety and ocds down. I find it totally relaxing and helps me to keep on track.
I find listening to the calm app helps and I also like drawing and colouring.