Lived Experience Forum

[outlander]

she is making my support services alot cheaper at the moment @Jynx so i feel bad saying anything. she even takes me on shopping trips for free but only if its for her.

[Jynx]

Oof @outlander I guess you get what you pay for...? But still, kinda defeats the purpose of having a SUPPORT worker if you're only receiving support on their terms. Still, if you think it's worth the emotional energy required, you could still have a brief chat about the emotional support side of things. Even if it only gets 20% better instead of 100%, that's still improvement right? 

How you travelling today anyway hun? 

[outlander]

I don’t think I will @Jynx I don’t have the energy to anyway.

I’m tired today but the fatigue levels are becoming normal. There’s always something to be going through here now but I don’t really feel like it today.

[Jynx]

Fair enough @outlander we do gotta be pretty careful with how we spend our energy hey. 

Could you write today off? Just settle in with a cuppa and a book or something? It's rough when the fatigue becomes your 'normal'. I imagine you're still in the thick of it, but you do always deserve a break. 

[outlander]

Yeah I done some scrapbooking @Jynx I haven’t done any for over a month and my arm and headache was under control enough for 2 new pages.

Just watching tv and will probably sleep on the lounge again. I haven’t slept in my bed since pop went in so over 2 weeks

[Jynx]

Oh niiiice @outlander I love that! Scrapbooking is such a creative process, I have never tried but I can actually picture it being really fun! 

I feel like sleeping on the lounge could be worth exploring - if you want to anyway (unless there's a super banal reason of course), let me know. I'm off for now but we can pick back up tomorrow if you like - up to you. 

Take care, nighty night 💜

[outlander]

It’s a good activity @Jynx it keeps my hands busy too


I don’t really feel comfortable in my own room anymore. The lounge is ok but probably not a longer term option even for the next few months. I use to stay in the lounge after night shifts just so I could have the tv or something on but it’s become every night I’m home now even naps in the day which is unusual for me

[Snowie]

@outlander my weighted blanket make me feel safe. It has helped me numerous times to stay safe. The weight feels like a big hug yet don't have to worry about getting close to someone.

For me it was well worth the investment.

[tyme]

@outlander , I'm so sorry to hear. I wonder if you are just too kind. You have such a big heart to help everyone. I'm sorry to hear how selfish your pop's children are. It's so sad that they don't regard you or support you in any way. 

Please know you matter to us. 

I hope you hear back from NDIS soon. You deserve all the support you can get right now. It's so much for a person to take on, let alone with all your health conditions at the moment.

Please look after yourself.

[Jynx]

@outlander that sucks hun, to not be comfortable in one's own space makes it that much harder to properly unwind/replenish ourselves - well in my experience anyway. Have you any inkling about the source of the discomfort? In any case, it doesn't sound fun, or sustainable, like you say. I'm sorry it's so rough for you hun, I imagine it'll take time to adjust, and to build a new routine and such too. I hope that you're able to get some good sleep, even on the lounge 🤞💜