A note to the government! My name is Jimmy Whiston I am 23 years old, I am legally blind and also have diabetes Insipidus and Panhypopituitarism. You probably have no idea what 2 of these diagnosis’s are but I bet you know what’s it’s like to be blind... maybe the kind where you drink to much from your high up kind of life. Also what the FUCK is a blog my mum is writing this and posting photos of me and I have no idea. She changes my nappy at least 5 times or more a day depending on me being a pissy pants and on the bad days she puts me on and off the toilet up to 10 times a day when I constantly ask, but not using words like you because I can’t really talk. She has to give me a suppository at the least 3 times a week because I can’t shit properly and if I don’t I could have a seizure from toxins in my body and get really sick. I piss the bed if my nappy isn’t changed or checked during the night! When I’m hungry my mum prepares my food, I can use a spoon but I need help putting it in bowl to find the food, I need support even with eating.
I can't shower by myself my mum has to help me get undressed and put me in the shower and then help me to get out and then get dressed again. I don't even understand this, I just love sitting in there drinking the water that dribbles down my face, and relaxing under it. I have to be given medication 4 times a day.
Morning - 1 tablet hysone - 1 tablet thyroxine - 1 table Androil - 2 iron tablets Lunch - 1/4 tablet minirin - 1 tablet Hysone Afternoon - 1 tablet hysone Dinner - 1/4 tablet minirin
do you even know what each are these are for or how they help? I cannot minister these myself and if I don’t get them I could become very sick and end up in hospital or even worse die! I actually love my life, I have my mums friends who support her by inviting me along to every event! And if she ever wants to go out alone she uses her own money to pay for support which can be up to $1000 or more on a weekend. This is because of her current funding doesn’t cover respite. When she works 3 days a week I go to a carer and she takes me out all day doing fun things like swimming, sailing, shopping and now I’ve got a bike, she steers from behind while I ride. Sometimes funding is low and mum has to pay my carers out of her own pocket because yet again still doesn’t have enough to cover. Tell me how she will ever own her own home? Will you give her a loan? I would love to have my own place with my mum...... How’s your job, got another pay rise? Mr Politician! The days when my Mum isn't working she takes me out doing as much as she can doing what she thinks a “normal” 23 year old does. Piggy Backs me up mountains, Camping, surfing for the disabled, chilling at beach and even going out to bars with her friends. I love it and laugh and giggle when I’m around my peers because they're funny when they are drunk and say silly things. I also love music as it’s a big part of my life. I cannot see so I need other types of simulation. Some days we sit around home and do abolutely nothing because my mum is tired, I am tired we need to rest, but if we say this will you penalise us? And say well you're not out in the community you dont need funding!! I love the life my mum has given me and I'm happy because of this. I don’t know what would happen to me without her! Would you be able to do her job? Probably not you’d give it to carers to do. Would they give me the life my mum gives me? WE NEED TO FEEL LIKE WE ARE JUST LIKE YOU AND NOT FEEL LIKE A BURDEN TO SOCIETY! Help families who struggle by trusting what they say! I REQUIRE 24/7 support if I was left alone I’d die! That’s the truth!! So why do I have prove in hours what I do every single day and the support that I need. Just look at me do I look like a fucking “normal” 23 year old! Even though I am normal for me and in my mums eyes so why just because I am different to you, you make it harder for me to live a "normal" life. We all have different needs I get that and I get that you need to know certain things about our diagnosis but what’s with making families fill out pages and pages of basically saying the same shit trying to prove what we do in a day. Give us a fucking break! It makes my mum Cry..... She now suffers from anxiety and panic attacks because it gets hard some days. The other week she went into hospital and she had no one to call for help to watch me so I sat beside her for hours holding the bed with blood shot eyes not wanting to sleep because I was worried about my mum. Once we left the hospital and home again I knew my mum was ok and I finally fell asleep giving her cuddles. If we’re happy and living our lives to fullest doesn’t mean we do not need help! Why do we have to say our life is shit just to get funding. It’s not shit, it’s shit that that you the government has idea what the average family has to go through every day! So stop fighting about stupid ass crap and who’s going to be the next prime minister and blah blah blah and actually take care of OUR fucking country and it’s future! We need your help to change the fucking system for everyone! Thanks to my mum who wrote this while I sat beside her singing along to some tunes, a smile on my face with no idea this is what she was doing..... Laughing because I heard her swear a few times and I know its a naughty word.. Anyway my rant from me that my mum wrote is done!
AND 1 more thing!
At the end of the day we are always be grateful for everything and every day that we are alive and being able to do the things we do.
Peace and love,
Just another human trying to live the best life he can with his mum by his side
A Quote from another mother feeling those exact feels
“I try so hard to focus on all the good. This process made me focus on all the bad. Just how little my daughter can do, everything she can’t do. I felt like it made her sound like she not a human being any more, but rather a list of long diagnoses and “can’t do” on paper 😭. My biggest struggle is trying to prove her worth. It is relentless. Proving to NDIS that she is worthy of support and funding. Proving to specialists that she is worthy of treatments etc because although she is disabled, she is actually a beautiful 15 year old girl who deserves the best life possible. I much prefer to live in my bubble and not open up my life to these people”