Lived Experience Forum

[SmilingGecko]

I will check in with you tomorrow @D1ng0. I'm sorry you are struggling and are experiencing so much anguish. Try if you can to get early morning sunrise, it will easily reset your circadian rhythms. If I have a patch of insomnia I go outdoors in my pjs and be there while the sun comes up. Its been an excellent survival strategy for me when sleep has been hard to come by and when I have been desperate. Its what separate doctors have told me to do and yes no matter how bad I felt it was the strategy always worked. So check when sunrise is where you are tomorrow and consider letting nature heal you! Holding you in my heart. Just be kind to you. Be patient and just listen to the wisdom of your body. Its telling you what you need to do

[D1ng0]

Thanks @SmilingGecko for the support. I hope you're doing alright this morning.

I tend to wake up at around 3AM at the moment, so I usually do experience the sunrise. It doesn't tend to help me, but I'm sincerely glad it works for you.

I'm struggling a lot today. I have a healthcare appointment which is causing even more anxiety, and I need to advocate for myself with my physiotherapist soon, which terrifies me. I'm scared of being labelled as a "difficult" patient because I'm calling this practice out on guaranteeing earlier appointments and then letting me down. I've had this same experience with practices before and they get so defensive about it. Suddenly it goes from, "we care about your experiences and we're here to help you," to, "you're pointing out inconvenient stuff for us and we're going to be hostile about it".

I'm less angry today. I'm more numb. Mainly, I'm exhausted.

Anyway, thank you for reading. And thank you for being kind.

[NatureLover]

@D1ng0  I was sad to read about the suicide history in your family, and how difficult that makes it for you to talk to them 😢

Good luck with your healthcare appt today, and with advocating for yourself with your physiotherapist 🤞

[SmilingGecko]

Hello @D1ng0 wanting to check in and see how you are going today! Stress and things not going our way can be very depleting.  I sense you don't have any supports and are faced with doing this all yourself. You should not have to do self advocacy when you are at a low ebb. 

I have a trans friend in the country and he seems to get lots of support and experiences no discrimination. I don't know what services you are linked in if any. He gets NDIS. Hes had some things go wrong with it but on the whole its worked out.  You are entitled to some measure of support.

I hope you can find your feet again. I think for now you are just in need of some R&R if possible. But you definitely sound as if you need something to start happening with your pain management physio. Pain management is a big multi billion dollar industry and they seem to not come up with very much while people like yourself suffer from debilitating pain. No answers seem to come from these clinics.

Just try and find a quiet spot in your day and focus on some rejuvenating rest for now. I wouldn't be placing any demands on myself if I were you if possible.

Take care beautiful soul. The world needs more of YOU ❤️

[Dimity]

Hello @D1ng0 I truly sympathise with your predicament. I have my own saga of pain and horrible healthcare, and can't unwind to sleep at night.

I do hope your situation doesn't amount to blocking behaviour by the practice to encourage you to go elsewhere. I may be a little paranoid but I often feel stigmatised and unworthy. Monday I experienced rudeness from a receptionist who seemed to be rejecting a referral for imaging before relenting, then I had a problematic encounter with a trainee radiographer. Today I had a less than two minute telehealth consultation with a gp who'd recalled me to "discuss" correspondence from an allied heath professional insisting I deserved follow-up. 

A 3 month wait to see a physiotherapist seems manifestly excessive unless perhaps you're in an underserved rural or regional area. If you're brave enough to try again, and I have the impression you're resilient and tenacious,  I'd suggest trying an osteopath.  I've received holistic and humanistic care from one. 

My journey continues,  and I wish you well in yours.

[D1ng0]

Hey @NatureLover, @SmilingGecko, and @Dimity, thanks so much for your kind words. Please know that I really, really appreciate you all. It was just very difficult to reply over the past couple of days. I reached the point where I was properly sobbing at one stage, due to being so upset, which is very rare for me. I usually don't cry at all.

I'm not able to have an earlier appointment, unfortunately. My choice is to wait, or find a different physiotherapist. I've decided that I've just got to wait. It's not a good solution either way, but I just can't open up to a new physiotherapist. I really can't do it all over again when I'm in this state. But I have let my current physio know that this failure of communication/organisation cannot be repeated. I think they appreciate how serious the issue is? I directly disclosed the suicidal and self harming thoughts they triggered, so... if they don't take their failure of care seriously, in light of that, I'll be forced to find a different physio.

I'm not currently facing any trans-specific discrimination (I've stopped seeing all practitioners who acted that way), so that's thankfully not an issue right now. The failures of care I'm facing are equal opportunity lol, me being a transsexual isn't a factor 😅

Thank you @Dimity for sharing what your experience with pain/healthcare has been like. I'm sincerely glad you've been helped so much by an osteopath! Because of the specific pain condition I have, I don't know if an osteo could help? But I will look into it. I hope you're spared awful healthcare experiences for the forseaable, by the way. It's such bullshit that we have to put up with this.

[Dimity]

I'm sorry the last few days have been so grim @D1ng0 . Thanks for letting us know you've come through. I trust you have good mh and pain management supports you can draw on to help you through the next few months. Contingency planning - to regain a sense of control - is something important to me personally, so I'm working on it. If you have multiple conditions the physio is likely to be only one piece of the jigsaw. And when our thoughts are dark it's good to fall back on a preplanned coping toolkit. What's likely to work is highly personal but there's a thread Our coping toolbox 🧰 .

Hope you have a better day and can do something nice for yourself over the weekend. I'll try to get outside if the weather's nice, and maybe catch up with s guided meditation or two.

[D1ng0]

Hey @Dimity, thanks heaps. It's tricky untangling chronic pain from the other stuff, and it does feel really nice to have you share that same sentiment re: pieces of the puzzle. My hope is that I can work on my eating disorder, depression, sobriety stability, et cetera, and by the time my next one-on-one physio appointment rolls around, I'll be in a better place to do that work. (Although I'm a bit stumped by how I'll handle pain alone in the meantime. Still figuring that one out... So, I'm with you on the desire for contingency planning.)

Thank you for linking the coping toolbox thread 😊

I hope today's a better day for you, as well. It probably sounds odd, but thank you for mentioning what you're doing to cope/soothe yourself this weekend. Fridays and weekends are hard for me because, as it's a time when many people attend social events or party, and I end up with this illogical feeling that everyone else is doing fine while I'm isolated and hurting. It's nice to be reminded, in a positive way, that others are struggling with many similar issues and are finding ways to manage.

[tyme]

Hey @D1ng0 ,

Thanks for your post. I can relate to Fridays and weekends being the hardest. They were my red flag times and many were spent in hospital or ED because I just couldn’t cope. 

It’s taken a long time to get to a place where I’m comfy with the weekends. It’s much better now. 

I wonder if scheduling things will help? You can join us this weekend to hangout on Sunday JOIN US! Live Sunday Hangout 7-8:30pm AEST 

[D1ng0]

Cheers for that insight @tyme. I'm really glad you're in a better place now. I hope I can experience that, too.

Scheduling things definitely is helping.

TW: Bulimia and food intake.

Content/trigger warning

Just because I feel like talking about it somewhere, I'm pretty proud of myself for sticking to the alarms I've set, which tell me when to eat. I'm still really unwell but I feel like I'm accomplishing something every day just by being a bit consistent. Scheduling the small things is helping since I seem to be lacking that internal regulation. I also feel like my dietician has given me permission to aim for gradual, smaller gains rather than aiming for a perfect healthy diet, which was part of the problem in the past. I've stopped biting off more than I can chew (ba-dum-tss), although it's still a work in progress.

I have had some really negative/harmful experiences with social gatherings held in digital settings, I don't think I'm comfortable with hanging out in that setting as a result. But thank you for the offer! It's nice to know that the opportunity is there.