Lived Experience Forum

[PinkFlamingo]

Hey there @D1ng0 🙂

thanks @Shaz51  for the tag ☺️

I’ve just had a bit of a read back through your thread… lots of what you’ve mentioned are familiar here to me. 
I’ve never had family or friends support me, in any way, while dealing with any of what I’ve faced throughout life, I live with a number of both physical and mental health conditions that mean I am thoroughly maxed out just trying to function some days, and due to one of those physical health conditions I have lived in isolation (exactly like covid lockdown isolation) since 2018…and ongoing… negotiating medical/hospital treatment for physical conditions is a nightmare of logistics, as well as having to repeatedly instruct all staff to wash their (expletive) hands after touching other patients!! (Usually I return home with a hospital acquired infection due to staff negligence which some have then taken me 2 years to recover from). 
I’ve had physiotherapists injure me, crack/damage bones (I have a bone marrow disorder causing weak bones amongst other things), and take zero responsibility - even blaming me for seeking a therapy I had no right to seek due to my health status. I’ve had psychiatrists and doctors heartlessly tell me I have munchausens despite there being imaging and blood test/bone marrow biopsy evidence. They have also told me my experiences are beyond their scope of practice - referring to trauma I have experienced throughout different stages of my life. Psychologists have repeatedly rejected me due to the trauma I have experienced, again stating it is beyond their scope of practice (these were trauma informed practitioners). 
I live with chronic pain after a hit and run (I was hit at around 70km/h by a driver who was breaking the law), where not only did I sustain multiple injuries, I also received an acquired brain injury. 
I currently have peripheral neuropathy which means I can’t feel my legs and arms from the knees and elbows down, besides varying degrees of searing pain. 
And the list goes on which includes terrible trauma from various hospitalisations and physical harms from staff, but I wanted to give a gist… 🙂🌺

Righto, having said that, I do struggle to get access to pretty much any support (It was only relatively recently I was able to get a lawyer to help get job seeker after years of struggling to survive: feed myself, no electricity at home [very tricky due to needing a ventilator to keep me alive overnight due to partial diaphragm paralysis after the impact from the car - I used to charge a battery from my neighbours place] etc, then by pure luck I was seen for an assessment for work capacity and that practitioner said you’re over 100 points on the disability tables - you should be getting DSP) but the key for me was not giving up…. 

There was absolutely NO way that ANYONE was going to put me down and keep me there. 

I’ve had to learn to walk again twice over, and now I mobilise on crutches, but I still do everything by myself at home - I have zero supports. 

it’s just recently that my Gp has said she will try to seek psychology intervention, which as mentioned I haven’t been successful in obtaining for decades. I’m also hoping she will help with ndis.

I know a bit about what it’s like to be in a bad way, be rejected or hurt repeatedly, and then try to keep the same decorum and stability as others who don’t face the same challenges. 
No doubt, it damages. 
But, I hope all this can help you in knowing that you’re not alone, other people know you’re hurting because they also feel it, and they (and me!) are right beside you, to help smooth the edges, and hold that all important space for you when you need it 🌺🙂

PinkFlamingo, Peer Guide volunteer at your service 🙌🏻☺️🌺

[D1ng0]

Hey @RiverSeal, thanks heaps for your kind words, I really appreciate it. I like that cycle diagram too, because it feels more realistic than aiming for a total, full-stop recovery, which is a trap I've fallen into a few times. I'm working really hard to survive everything that's going on, especially since I have so little personal support, and it's cool to have someone recognise that. Have a good one!

[RiverSeal]

No problem @D1ng0! Hope it all goes well ❤️ RiverSeal 

[D1ng0]

Hey @PinkFlamingo, thank you for sharing what you've been through and are currently going through, it's very inspiring and makes me feel less hopeless. Firstly though, I really feel for you, and it's so terrible that you've been let down to such an extent. I really wish you hadn't gone through all that awfulness, but your strength sounds incredible. I hope your GP can help you and get you the psychological support you need, it sure sounds like you deserve it.  Thank you for talking about what you've conquered and what you've struggled with. 

[PinkFlamingo]

Even if you don’t feel it at the time @D1ng0 , there’s always hope to be found in others who hold that for you 🙌🏻🙂🌺

SANE Forum’ers are a really top bunch with loads of empathy and a soft landing for those jagged edges days - I’m really glad you’re here ☺️

And I want to say a kind thank you for seeing a bit of my story, and feeling it is relatable in ways that can help you 🙂💜🌺

Connection is part of coping and your words lift me up like mine do for you 🙂🌺

I hope you can have a better day today 🦩🙂

[Hannelore]

I’m very sorry @D1ng0 that happened to you from a church group/pastor - didn’t mean to push religion on you. It sounds like you got so many struggles - and doing it on your own is monumental 😕

Just to let you know you’re not alone.

There are some good people out there, but sometimes hard to find.

Don’t give up ! 🐥

[D1ng0]

No worries @Hannelore, I didn't feel that religion was being pushed on me, and I didn't sense any malice in your words 😊 I just prefer to steer away from the topic of religion in general, when seeking support. Late last year a psychologist actually did push religion onto me, as the answer for my nerve sensitisation, and was incredibly condescending/insulting when I said that such an approach would not work for me. So, I recognise the difference between someone sharing their story and someone telling me how to live my life. And I'm thankful for your kind words!

Though we may have different approaches, I hope you persist with support-seeking as well, and that your struggles ease.

[PizzaMondo]

Hi @D1ng0 🙂

Firstly, it sounds like you've had a humungous week that just passed! It's great that you've been able to make better sense and relate to your new diagnosis. I can imagine it's a lot to take in, and know that that is OK as it's not an easy process to just accept and go on always - there's a series of steps I feel many of us take, and I want to encourage you to take the steps you need in order to accept this news.

As for friendships/losing contact - it does sound like it was a bit one-sided with some of those friendships, but it's beautoful to know you have 2 treasured friends who are more understanding of mental health.. I feel like these are the people who - like you said, can go for ages without talking, and then when you do, it's like no time has passed! Even though it has.. or you just have a bunch of things to talk about and still there is never time - but you always have the best time together anyway 🙂

On the other hand, I know when you have friends dealing with their own daily struggles and life, it can still feel lonely because the direct and immediate support and connection may not be there.. that's why for 1 - I am glad you're using this space to connect with the SANE community, but also wonder - what else may you have the spoons for, considering what works with your own mental health, wellbeing and work priorities? (One thing that came to mind RIGHT then was booking in a time and day for little catch-ups so you mutually have something to look forward to! & online spaces other than this forum - like peer work in other spaces?)

Finally, I am glad to know that you have a very understanding boss - it's so crucial to our wellbeing at work to have someone who can understand, accept and allow us to do what we need to do at work in order to complete our best work! (Efficiently, too!) Sounds like your work is important to you also, and that you have a lot of gratitude for not only your boss but your work itself! This makes me smile!

I am curious - if you feel comfortable - what type of work accomodations have you asked for (if you have asked directly)? And have you been able to identify a noticeable difference in the way you work?

P.S. Sorry for the long response back - take your time, at the same time, no stress or obligation to reply ever 🙂

[D1ng0]

Hey @PizzaMondo, thank you for your support. Last week was definitely a massive week. Thanks for the words of wisdom re: accepting this diagnosis and processing it. It's nice to know that this community is here when I feel the need for more support. Needing to summarise things for multiple practitioners, and organising my health information into lists, is actually helping me absorb this diagnosis, so that's nice. It's also a way of advocating for myself and saying, "here's what my health situation is" in clear terms.

I definitely hope that those two friendships can persist in that way. But I also feel a bit resigned to whatever happens, because I'm doing as much as I can. A private goal of mine is achieving a level of mental/physical health where I can do things like join casual sporting clubs or hobby groups. Even though I'm definitely not capable of that right now, the goal gives me hope, because I could do that at any time in the future (after all, gatherings like that won't ever stop existing). That makes my current stagnation seem less hopeless. The world will still be there when I'm ready for it, if that makes sense.

I have received peer support from someone in my community, recently. It's been quite good. I don't think I can take on more at the moment. Even my own solitary hobbies feel very exhausting, and it's hard to see the point in them anymore. Even though I know that's my depression talking, I also think my interests are changing. I used to draw/paint daily, but now it seems boring. I take a sketchbook with me when I'm waiting around for appointments to start, but that's about it. I used to really enjoy weightlifting, and I'm dreaming of a day when I can do that again.

My boss has been totally chill with me working from home, I'm very grateful for it. That means I work in an environment where my desk, chair, and computer are set up in an ergonomic way which reduces pain. And if my pain flares up, I can lay down and wait for it to recede... which would probably be impossible/awkward onsite 🤣

No worries about the long response, I'm grateful for every word. Thank you for taking the time to chat to me! And I hope you're doing okay, too. 😊