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What does "better" or "recovering" or "supported" look like for you?

What does "better" or "recovering" or "supported" look like for you?

Not sure if anyone else will be interested in this post; if not, that's OK. But if even only 1 person finds it helpful to them, then that is good also. Hence I will share my thoughts. Everyone is welcome to respond, post their own reflections, etc.

My forum friends may know that, for me, this year is about trying to figure out what can help my condition/life improve, because things have not been sustainable with how they have been over a decade and worsening in the past few years. My experience has been that since the common treatment approaches haven't worked enough, the healthcare providers I have spoken with haven't know what to do after that I have been left to self-management -- which has lead to a slow decline then rapid decline when other things "pile on". So it is from this that I am sharing my process as food-for-thought for others.

The first questions for myself are:

  1. What is it that is not OK at the moment?
  2. What would it need to be like for things to be OK/acceptable for me?
  3. What can I think of that would, in an ideal world, help me achieve that acceptable life?

At this stage I don't make myself have to be realistic about what I think is possible - this is just "ideal". The wishlist. But things that I genuinely think are what I need to be healthy/OK/accept-life. Question 3 is always the hardest one for me!

Asking myself what would help me is always really tough - because sometimes I don't know, but many times even if I do know I don't think it is "realistic" or feasible or "on offer". And that is really hard to sit with. But I also believe it is really important to still think about, because it is only through acknowledging these needs that I can then assess which can be met currently, and which cannot. And then I can ask around other places if they know anywhere these unmet needs can be met. And yep, some of them still can't be met - so then it's a matter of "can I create it myself? can I advocate for it for the future? can I raise awareness of this critical gap & the impact?"

Not a trigger warning - just a personal aside that I don't really want taking up space for those less interested!

Content/trigger warning
Personally, I have gone through the "what can I already put in place?" and the "asking around other places" stages. There are some core needs that I am now at the "can I raise awareness of this critical gap/impact?" consideration stage - I am not sure if I want to do that right now, because I am not sure it would bear any fruits and that is a waste of energy. However, the other part of me says it wants a voice, so maybe doing so will be helpful for myself even if it does not bare fruits? But will it backfire if/when nothing comes of it and I could feel even more ignored/unsupported having given feedback? How does this weigh between my conscience telling me I need to give feedback for them to be aware from an individuals perspective, but also needing to protect myself from potential hurt?

What people need is individual to each person. I am curious what other people identify as what they need?

Here is what I have found I need (again, not a TW, just using a hidden box for those who aren't interested, to make the post shorter):

Content/trigger warning
  1. Not have chronic pain
  2. Not be exhausted all/most/a lot of the time
  3. Be able to experience positive emotions/feelings/enjoyment
  4. Feel motivation and drive for something / want to live for myself

I have been managing #1 well for a year. I am working on #2 with trialing not-working. #3 and #4 are yet to come, but with #1 and #2 worked on, there is hope that #3 and #4 may be able to develop with the reduction of those stressors plus a novel treatment trial to help it along the way.

Of course there are other "resources" that are required to enable these things to be achievable & support in the meantime to "get through it" to get there - they are worth identifying for yourself I think, even if they are not currently available. I am interested to hear what others have on their lists of what they can currently access and what they want to have accessible that is not currently.

32 replies

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In response to: What does "better" or "recovering" or "supported" look like for you?

Re: What does "better" or "recovering" or "supported" look like for you

@heartathome @AlwaysMyself @Appleblossom @DahliaDreams @REDLINEZ750

Things I’ve mentioned are things I’d like to have happen with MH specialists. Things within the last couple years I’ve felt were not fully there or, in some instances, not there at all.

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

@Flutterbug9 💜 

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

Currently waiting for photo or pic to be approved @heartathome

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

It's only a support button GIF @Flutterbug9 I usually put up a support button when it's not working. I would hate to think that anyone feels they haven't been heard or supported! 💜

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

@AlwaysMyself

Fyi I’ve edited and expanded what was on my post since you read it. 🙂

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

It’s finally come through @heartathome

Love it. 🙂

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

@Flutterbug9 I love that you quoted from Camus.

Sadly there are many practitioners who are seem unable to understand the importance of the walking alongside, and allowing the time to gradually wait for appropriate windows of opportunity to arise within each client, and then, offer a tip, or tool or worksheet, but only then, after a good therapeutic relationship is established. When they come from a too knowledge based position, and dont accept that in many ways the client is actually the expert in their own life, they can make things worse. They may put people off, because of their impatience or arrogance. It need not be arrogance at first, they might be full of the exuberance of their recent studies. They may be oblivious of the negative consequences.

As a lifelong teacher and learner. I wonder about the concepts of educare and educere. Education should not be a mechanistic transfering of a set of knowledges from one who holds it all to a blank slate. It can also be a drawing the wisdom from... in an interactive process.

We could discuss EPISTEMOLOGY, but lets not get too deep into philosophy yet.

I first taught reading in the orphanages... probably would have been diagnosed aspie, lol...now renamed to autism level 1...lol ... I been around long enough to see so many fads and fashions in the mental health field. Taking them all with a grain of salt.

@REDLINEZ750 That girfriend was also a piano teacher and we were choristers together, and probably a bit frustrated with our conductor. The full bellied laughter is good.

So, through one lens we could say my preference for books from a young age, was a disorder, or a structural dissociation or, or or. I can assure you I always had feelings. I just didnt have words or was in the socioeconomic position to have people interested in me or my feelings.

Or through another lens, we could say my bookishness was a strength, helped the teacher, the other kids and helped me get into Melbourne uni.

re "

cbt however triggered me hard i just felt attacked, questioned gaslit and it would raise my tolerance of bullshit to zero in 1 paragraph strangely it works miracles for others,."

I heard a couple of therapists' opinions of cbt as it was coming into fashion. They weren't too impressed with it, and maybe your experience is part of the reason. I did not have an opinion. But later when I had time to check it out on the internet, it seemed to mechanistic too me, and did not go into the reasons, or causes or etiology of the mental phenomena in question. It was being pushed as a quick fix, but apparently they did not count the people falling through the cracks. So much for evidence bases. There has to be a will, to collect the various data.

I checked a little DBT online. I can see some value, but I have already given enough money to the system, and it seemed too big a spend for me. I am just not rich enough. The hospitals were getting richer tho.

@DahliaDreams

"

I suppose that if I was in therapy (which I'm on the long waiting list for) then I would expect the therapist wouldn't focus on something like 'behavioural activation' without first exploring the things I genuinely want to do, rather than things that look acceptable for an outsider looking in - like work, or volunteering, or exercising. I think I've proven I can do all that sh*t but perhaps it just wasn't the right sh*t for me.

Does this make any sense to anyone? I can see that there could be downfalls to this behavioural activation scheme if it was not applied carefully. "

Totally makes sense to me. We do need to go back a bit to Client centred practice, rather than the hype and presumptions of too many latest breakthroughs...

@AlwaysMyself Love your discursive style, the way you unpack ideas and give support to others.

Dont worry about delays in response.

Love your discussion of "choice" re lollies.

Yes, I have a passion for advocacy. I have made broad sweep of the field now, from a few points of view. Sadly I was not in a position to advocate well enough for my son or siblings or father, at the times they needed it. I tried. I was too trusting. On the one hand, I can see "a positive" in my motivation, if in fact the system does change and improve, however there are too many dead people and damaged people for me to be too bright and happy about that. I need to balance it with the seriousness of the matter. Its not just about me.

@heartathome hugs

In response to: What does "better" or "recovering" or "supported" look like for you?

Re: What does "better" or "recovering" or "supported" look like for you?

Great thread @AlwaysMyself definitely lots to think about hey. Following along 🫶🙏

In response to: Re: What does "better" or "recovering" or "supported" look like for you

Re: What does "better" or "recovering" or "supported" look like for you

 

@Appleblossom 💜

In response to: What does "better" or "recovering" or "supported" look like for you?

Re: What does "better" or "recovering" or "supported" look like for you?

Better = Having a daily routine, even if it's just logging into SANE everyday.

Recovering = Posting about my thoughts, worries, anxieties, etc on SANE Forums.

Supported = Receiving that love heart.

Connecting with like-minded people like @REDLINEZ750 means I am able to feel better, recovering and supported - all 3 at once! Thanks for the tag!

SANE Forums acts as a catalyst for me to begin to feel happy once again. It plays a vital role in my wellbeing.

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