Lived Experience Forum

[outlander]

I don’t go to hospitals for a few months @tyme
They’re not helping much just going through their own things

[tyme]

Well at least they are going through their own things and not expecting you to! @outlander 

What have you been up to lately, if you don't mind me asking. I hope you've been okay-ish. Are you still in a lot of pain? 

[outlander]

Working a lot @tyme everything is setting in so I’m getting a lot of emotions but because I’m home alone now when I’m not working it’s harder for me to manage. Better for me to be doing something.
I’m pretty tired though when I’m not working I’m basically just sleeping. Sometimes 10-13 hours
Pain is always a factor in my life with complex pain and other medical conditions

[tyme]

I don't know how you do it. So much pain yet also able to work. @outlander  Good on you. I guess no one else will pay the bills. Are you okay about everything?

But it's true. Best be doing something or the mind tends to wander.

Have you heard back from NDIS yet?

[outlander]

unfortunatley no, i havent heard from NDIS yet. its been so long now but apparently its in the last stages and they hope to have an answer within the month. no guarentees though but thats only an answer, if they say yes it could be months before a plan meeting so i am able to access funding.

@tyme i dont have any choice except to work. my health costs me a fortune plus i will still need to be able to live as well. the enxt few months will be a trial run to how ill be able to consistenlty work this much with so many issues. im hoping to be able to at least be stable at 5-6 decent shifts per week (as in not 2-3 hour shifts unless several in one day)
otherwise i may need to consider disability and stick with only 25 hours a week as thats the maximum hours i can work on a centrelink payment unless its with a disability provider [edited by moderator] who only pay $5 an hour to their participants which i find shameful.
getting NDIS would mean that i could access supports to help me keep working as well

[tyme]

I hope you hear back from them soon @outlander . I enquired from people from NDIS once and they said even on the NDIS, you can work full time. So I hope getting it will help. Fingers crossed.

Any plans for today?

[outlander]

NDIS encourages people to work to whatever capacity they can @tyme i have restrictions on what im able to do but i work with those and the employers that i have now know about them and they ask my opinion on whether i can do certain jobs before assuming so im lucky with that and ive been able to have supportive employers in that respect.

yes im working today and i have a few hours volunteering this afternoon.

[outlander]

the volunteering i do was cancelled today. they didnt need me but were going to an event that i wasnt included in.
@tyme

[tyme]

I'm guessing you feel pretty flat about it @outlander ?

Putting myself in your shoes, I'd be pretty peeved. Are you okay? Also, I've sent you an email.

[outlander]

it is abit upsetting @tyme it goes with the unwanted feeling. it is something that really as a group we shouldve been doing together for this specific client that we have but i guess as normal im only wanted when im needed not because im ok to be around