🎉 Weekly Facebook Live 🎉

Wednesday 29th September 9am 2021 AEST
Dear diary…week 54
I started these weekly lives 2nd Wednesday of September in 2020, so a year ago!!Their like a diary and document for my rare disability journey.
I wasn’t always doing these lives longer than 5 minutes, but I noticed I can do it for about 10mins. One of the many things I have noticed along my rare disability journey is that I I have a respiratory condition 😕 It all depends on how I feel to do a longer live 🤪 I’ve never had to time my lives.
Its very small but I also noticed my connection on knowing how much voice to use and the strength of forming words. It does take a bit out of me 😒 Doesn’t help that being in the spotlight freaks me out but I do these lives for confidence, tell my story, mention what helps me that may help you 💃
I stuff up words or how/what to say and I have a thought stutter (brain fart 😂) and I’m ok with that. I do have an older brother that has this disability more advanced than I have.
The next step in my journey is I will be getting a puppy, toy poodle to be exact💃I don’t know the sex, colour etc as yet but I have thought of a gender neutral name and one syllable so it’s easier for me to call, Case, as in case file 😊 It will be a companion/therapy dog. Easy to train, doesn’t shed (but needs to be brushed every day 🤷‍♀️) hyper allergenic I’ve been told and am onto getting the place ready for it 💪
I’ve already set up taxis/maxi taxis to get to places if family or friends are unable help at the time, I’m still used to last minute 😣 I have a lot set up so it takes the pressure off family and friends, I know how hard it can be.
I had the mindset that I I’m a burden but I adjust and so do others that love me 🧡
Every step about my journey may not look or seem like much, but for me it is. I’m honest about what is happening to me for as I mentioned above it is also for another not just about me
I started getting meal prep assistance and have got the ball rolling to get a roller chair for in the kitchen. Computer chairs are not ideal for ankles get caught on the wheels and desk chairs are made for one spot 🤨 I’m used to helping but it gets too much for me. If I don’t keep in mind not too much, my body will tell me and not in a good way 😒
I have to wear glasses for long distance and it’s ok to wear 24/7, I checked. Instead of taking them on and off, I choose to wear then 24/7. I will get onto getting the glare reflection. If this means I have to get new glasses, I will 🤷‍♀️
Here a link I found to follow if your on a video call and don’t want the reflection shown, if you don’t have the anti reflective coating.
• How to Look Good on Zo...
Don’t hesitate to ask me anything. Questions are welcomed by commenting down below or private message if you feel more comfortable that way.
Find value in my lives?? Feel free to share away for I am only one person and are so grateful that you do 🙏
Want to watch my weekly lives direct that is on every Wednesday 9am AEST?? Here is my Facebook link / jfk842
.
.
.
.
.
#weeklylive #justfollowkindness #gettingitdone #positiveandconsistant #motivated #raredisability #disabilitylife #perraultsyndrome #hearinglossawareness #justkeepswimming🏊‍♀️