my wishes for my birthday

I don’t know where the time has gone but in June I will be 37. There are times when I feel I don’t deserve it because I don’t always act my age. I try hard to be a better person but not everyone sees how hard I try.

My wishes for this year are to have a nice celebration with my family and friends in my house. I want everyone around me to be happy and healthy.

I want to go somewhere nice for a few days with a few friends and relax. I want some nice things I can use but I would also like to keep improving myself.

Finding workers

Since COVID I find one of the hardest things is finding workers to support me with different activities.

I am lucky at Lifeskills I have a great team of support workers who are like family to me. I also have a beautiful lady who takes me out on Saturdays.

I have a wonderful afternoon lady who helps me every afternoon and can take me out at other times when needed. The problem is that when I want to do a particular thing with friends I can usually can only ask those workers as I am not allowed to use my lifeskills workers. Northcott will look for others but COVID has made that part hard because there is a shortage of workers.

My afternoon carer is through hire up and mum just books the hours we want. The annoying thing is that if they can’t mum has to do it. I love mum but I also think she deserves a break.

Living life with covid around

COVID has been in Australia for 2 years. For two years the numbers have gone up and down. Just now we are starting to get back to normal.

It is a great feeling to see people out and about living life as normal and we have to live life but we also need to be careful.

There are still people that are at risk so I think if we are sensible we can continue this way. It has been a hard two years for many but we have come out the other side and continue to do so. This makes me very happy

Phrases i hate

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.

Covid and supply shortages

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.

Neuro

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.

Covid

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.

Anxiety triggers

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.

Happy newyear

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.

Booster time

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.