Tillogram

Hi @Till23 ,

Thanks for the update. I was wondering if you were okay. Didn't you go away for a bit? (I mean, for your sport?)

Don't worry about me seeing to whichever post. I get to whatever I can. No need to do any stressing about that on my part @Till23 . I know you have a big heart 🙂

I'm sorry things have been so hard for you. Is there anything I can do to make it feel a bit better?

I just edited in another paragraph to my previous post @tyme which may be of interest..

I have been away twice in the last couple of weeks.. One was for a sports competition,, that was a short trip.. .

I suppose the feeling of connection is a good thing that I get from the forum people I have come to know including PSWs

Yes @Till23 . I'm hearing you. I know exactly where you are coming from in relation to what you have added. It's definitely at the top of my list to do something about it as it's not sitting right with me.

Anyway, it is what it is for now.

@Till23 Hello lovely. How are you?

How is the cancer trial going? I’ve been thinking of you bunny.

Hi @Cuddlebear,, lovely to hear from you.. I haven't been on the forums much at all lately.. So I'm not really up on the latest news etcetera.. I have managed to glean in my skim reading that things have not been good for you. I'm really sorry to hear that update. I often think about you, even if I am not on the forums.

Actually I should have said it's a study rather than a trial. I've only just started it and I won't find out the results for ages. It's a long term study about health after a cancer diagnosis. I'm currently wearing an activity tracker for a while, to gather baseline data, then I will wear it periodically throughout study period. There are interventions throughout the study period. The study goes for 2 years, so that's areason to exist for 2 years. I'm also in another study, that's also long-term for people who have previously attempted suicide.

@AlwaysMyself just tagging you because you asked about the study on your thread.

Good evening @Till23,

How are you? 💛

I know you haven't been on the forums as much and that's completely okay - we always encourage our members to follow what feels good for them.

I know you are always doing so much to care for your mind and body. How has sport and volunteering felt as of late?

And I understand what you mean regarding your thoughts and how challenging it can be to shift such strong thought patterns... I am sure that these thoughts and beliefs were consistently repeated many times to become as strong and sturdy as they are. So I can imagine that the opposite would be true too? Perhaps continuing with the rewiring of these thoughts more consistently and seeing the process all the way through that place of discomfort (feeling like you're faking it) will help in time? But I know this is hard and easier said than done. I am finding my own rewiring of internal beliefs really challenging at the moment too. 🫶

I thiiink @AlwaysMyself has filled you in on their experiences and current therapeutic explorations. I wonder if something like that would be helpful for you to explore too?

@Till23 Apologies for late reply (which I know is perfectly fine, but I like to reassure 🙂 ) - been so busy with life-admin and commitments I’ve only had a few hours to post places and that usually means I only get to read one or two threads per time! I only have 143 unread email notifications from SANE forums though! (I recreated its own email folder for them yesterday, to get the out of the way of finding my “life admin” emails. I delete them once I have read/answered the post.)

(Edit: this post took me so long to write that my authentication token timed out. This is why I may be seen to only respond in-depth to one or two threads lately - because it takes me so long. But I do this because I want and like to read & respond. But I hope people don’t take it personally when they see I have responded elsewhere but not to them. This literally took me about 2 hours to read/write/edit. But today was “your turn” 😊 and later today or tomorrow will be someone else’s turn for my attention lol. That’s how I’m choosing to manage my busy-life-but-I-much-more-enjoy-the-forum-indepth-discussions situation.)

**

Oh dear, this post is way longer than I intended. But I don’t know how to cut it shorter! And I don’t like to feed it to AI because a) privacy (I assume/hope this forum has a no-crawl command for robots) and b) it won’t “sound like me” / authentic. Dilemma!

Please skim-read just what interests you only! No pressure!

Also aware of @AuntGlow ’s comment and not sure if I’m meant to take it as a “you say too much / too long” (in a loving tone — good feedback!) or a “this is a peer support forum, and that’s how it works - through relating life experience & learnings” 😅. Maybe a bit of both? (But it don’t take it in a negative feedback way - only ever constructive, don’t worry!)

***

"I have managed to get by just myself for the last several decades."

… I’m going to lovingly challenge this @Till23 - again because of my own self-reflections recently; so please understand I may misunderstand because of my “relational lens” to it. But again - just in case it clicks and helps I feel its better to share than withhold. I guess, I no longer see chronic suicidality as a sign of “getting by” in life - I’m trying to reframe my own self-perception to acknowledge that this isn’t coping. If I consider what I would tell a friend who told me they felt/cope how I feel/cope — what would I tell them? That’s what I need to start telling myself too!

I have told myself this so often too - except, well… only for 2.5 decades because I guess I’m a bit younger. But I’ve told myself this since I was 12 years old. “I cope. It’s fine. One foot after the next. I can force myself to do what I need to do, and I just prioritise what really needs to be done right now.” …but I also always felt “a broken human” because everyone else seemed to cope fine with doing these normal day requirements where as me?

TW: SI (because it’s me, right? )

Ok, so where am I going with this? In preparation for my clinical trial as well as exploring the idea of “do I have autism and/or adhd?” and “would I be likely to meet the DSP impairment thresholds?” I’ve done a number of Rating Scales. I find them very hard to know how to answer the questions, and have noticed when I do them interview-style where I explain my answer to the qualified professional I get a much higher score of severity than if I answer based on my own rationalisations and things I disclude as being ‘valid’. I am now aware of this, so if I’m unsure (I start hearing myself saying “yeah, but…" and its not one I am answering “with someone else to explain to” I will now ask someone for their perspective. I literally called a non-autistic friend yesterday to ask them about showering and what is “normal” and how they would rate my (highly embarrassing and confidential) experience. They were firmly in the camp of “severe” — which is also what an AI program returned (with justifications of why) when I asked explicitly about the specific Rating Scale and question and my “pros and cons” I have deliberating about. I find it really hard to self-rate it as “severe” because it’s psychological and not a physical inability.

When I then get the results of these scales in the “moderate” or “severe” impairment overall it still surprises me. Because I cope so much better than I used to 20 years ago! Because I internalise it - I don’t “look” disabled. And I also don’t feel these results are valid when self-administered, so I do feel I need to get my GP to go through it with me for my DSP, but I am trying to prepare my own notes/thoughts for her ahead of time to make it a bit quicker for her to assess & select the correct category she thinks.

… but since I already know I get “severe” in depression scales - that one is confirmed to me already by psychiatrists. (I mean, f***, I’ve been accepted into a clinical trial for PAT right? It’s got a strict research criteria!)

…but self-scoring on whole personal impairment (like the WHODAS)…? I did not expect my results and it opened my eyes that I am (objectively) much more “impaired”/disabled than I believe about myself subjectively. And it is because I “soldier on” to my own mental detriment.

…. I wonder whether or not any of those thoughts/feelings sound familiar for you too?

If they do, maybe you’re not “coping” by what other people would assess as coping as well as you think you are? (i.e. your standards are different to others?)

@Till23 I really loved your comment to @tyme about communication transparency and cause of difficulties (eg funding). And I really appreciated your response on it too @tyme and I hope you are able to do what you need to do.

I’ve often wondered/assumed it's a matter or funding for paid staff and also number of volunteers available (which is where prac students can be so helpful, but downside they’re high turnover). I wonder whether the “volunteer work on centerlink” for those nearing age-pension age could be a win-win avenue? Once retired, the forum volunteer work could still continue to be a meaningful connection in their life & sense of contribution (something many people transitioning to retirement or unable-to-work struggle with) — so they may be lower turn-over than prac students. There may also be a thousand reasons this is not a practical or wise idea — you are much more in the know, so I’m just going to leave it there of the off-chance it isn’t something already considered.

@Till23

• How did the sports comp go? Do you feel happy with how you did within your own capabilities on the day?
• Fathers house for sale - great work continuing to slog away! Sounds like a mammoth task, and wondering if it also feels that way? (A bit overwhelming at times?)
• EMDR & MindSpot PTSD - fingers crossed for you it goes well!
• Cancer study - Thank you for tagging and outlining. 🙂 I am interested. I’m also really glad to hear you are helping further research through being involved even though I know being a participant (and likewise the post-attempt study too). Its so important to have longitudinal outcome studies. I love that they also give you a longer commitment time, to see them to the end! I will assume you have read my own experiences with using this method too?

Hi @AuntGlow,, thank you for your post.. I hope you are going ok.. Although I'm not here much,, it seems you aren't either..

Sport is going ok,, there are a couple of competitions coming up and I've got a bit on with sport in Spring..

Faking it until you make it does seem to have some success in various areas,, so I suppose it's worth giving it a go..

I have a couple of things I am considering and at least one I will definitely try shortly.. I did try one thing recently and I am just going to see how that goes for a while at least. I am also doing a Minspot PTSD online program which will go for about 6 weeks. I'm almost halfway through that.

I've also got IFS at the back of my mind.

I am sorry that you are having trouble with shifting internal beliefs. I can definitely empathise with this difficulty.

Hi @AlwaysMyself and thanks for your post and the time you took to make it.. I am not concerned at all about how long it takes you to respond,, or also if you prefer not to respond.. You seem to be making a lot of posts in different parts of the forums..

I have also exceeded my token time, sometimes I think it's going to happen so I copy what I have typed before clicking on the post button.

When I said I have managed to get by on my own, I actually meant I have managed without having NDIS. I've managed to keep working so have not been eligible. Working, although difficult and really difficult at certain times, (during cancer treatments and caring for my father), I think was overall a positive thing for me.

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Coping I suppose, has different definitions for different people.

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I have been a participant in quite a few studies for both mental and physical health over the decades, as I hope researchers can gain knowledge which may translate into treatments or ways of interacting with affected people..

I have read that you are using the study for a purpose other than the study aims.

I will sign off now, as I have to get up well before dawn to do a bit of extra training. I normally have early morning wakening at about that time, so shouldn't be too hard to get up!!

I hope the PAT trial is going well, although I think you said it's a while before the actual intervention.

Also, don't overdo it with all this posting you are doing, I know you say you like it/it's helpful, burnout is still a real thing.

I am, thank you @Till23 🥰

What are you noticing in your body when you're actively participating in competitions?

It's something I am working on too, so you're definitely not alone in honing the art of redirection... or 'faking it til you make it'. 😉

Okay, it's really wonderful to hear you talking about some strategies you're exploring. How is Mindspot sitting with you?

IFS is often in the back of my mind too! What are you considering/pondering?

It's tough, but I know it can be done - for both of us. 💛

And @AlwaysMyself, I was referring to your clinical trial in PAT, but trying to be subtle about it 👀😂