Disability View

I have a very annoying new night caregiver. Complains all the time to me in a jokingly way. Like I use Alexa all the time, she comes running into my room, “you want something?” “No, talking to Alexa” I replied. She then comes out with  “oh I wish you didn’t talk to Alexa” in a funny way, but she is actually annoyed at me. Can read people like a book. It’s all the time, she trying to manipulate me, so I feel guilty and so I won’t ask her to do much for me. Hate it, I’m already scared to ask her to do anything for me, can’t even eat or drink without a comment from her. If it continues I will have to get rid, my life is hard enough as it is. I don’t want someone to make me feel guilty in my own fucking home. Getting stressed now, fuck sake

Some caregivers like to tell you all the time in a passive aggressive way, the caring they do for you. “he’s had me up all night” night carer says to day carer. Because they don’t like it when I stay awake until 4-5am on my computer some days, usually having drinks and snacks. “Chocolate at this time”. I feel like saying “yes I’m only 5 years younger than you, you know an adult. I used to put up with this, but now I hate it. I shouldn’t be made to feel guilty for a job they get paid to do. 

Wonder if they think I’m asexual... Dad did until he illegally found out I used a cam girl site, hahahaha! Jesus Christ that was embarrassing. Story for another time. 

Please can I do everyday normal things without comments! Sleeping, drinking, eating (yes I have lots of chocolate, don’t need reminding everytime I have chocolate), pissing, shitting, getting washed, getting shaved, it’s all the time. Feel so fucking disabled, Why can’t people just shut up.  

 “Can you pull blanket down?” other person, “why are you too warm?” “YES! 20 minutes later, “can you pull blanket back up” other person “are you cold now” “YES!”.  Questions questions questions,  EVERY time I ask for something. please can I have a a simple job doing without questioning me, gets so tedious and I feel so disabled.  “can I have a drink?” other person  “why? are you thirsty?”. Jesus Christ!   

For the last few months dad has started calling me “baby”, which is really inappropriate, a father calling their 30+ year son “baby”.  I’ve told him that is what men say to their girlfriends or vice versa. It’s really humiliating, he knows I can do nothing about it. 

Every time I have a normal discussion with dad, about anything really, he always ends up going on a racist rant, every time now. He is getting worse, as he’s getting older. 

Ordered some of these for care givers and family, to say thank you for helping me during lockdown. Dad would never do this, would probably think it’s a waste of of money. I’ve been called ungrateful so many times in last few week. Yet, I’m one of the most grateful, being disabled with Duchenne makes you grateful, And if I move out, I’ll be even more grateful for people’s help.  

How come it's okay for everyone in my family to know my financials? Than I ask family members about their financials, and you get "don't be rude" or "it's non of your business". Sick of it.

Hearing bad news that affects you is the worst feeling. Today was the worst bad news I’ve ever had, at 34 it never gets easier.  

Dad: “he didn’t kill any disabled people. Stop playing the disability card!”  

I know my condition better than anyone who doesn’t have it, yet parents think they know Duchenne better than me.

It's time we hear "men with Duchenne" or "adults with Duchenne. It's always "boys with Duchenne". We do exist you know.

Don't know why but my dad hates when I talk to older people with Duchenne. Don't get it, why wouldn't he want me to get advice from people with my condition. Well he hates that I sometimes wear my bipap during the day. I feel so guilty for wearing something that helps keep me alive.