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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 your reflectuons make a lot of sense 🙂 - feeling safe again (as opposed to the feeling if not being safe due to the past trauma), and meeting and developing safe friendships with genuine people. 🥰😍

Coffee out is a great way to reward yourself for the "doing" and also self-care on the days where you need some extra love and compassion. 😊

I hope that if the journalling and/or poetry is helpful again for you in processing your feelings and working through things that you also are able to gently motivate yourself to reengage with it 🥰. I am really glad you have also found your safe places and friends here to share your story and writings (when you want to) with.

Sometimes it is easier (less risk?) to trust people anonynously online first, isn't it? To relearn that real people who care without self-interests exist!

I hope you also can use these experiences to help gain confidence and hope in meeting people face-to-face who are also safe. Group settings i agree can be a safe option for this - and its also ok if no one in that particular group "clicks" right with you -- thats what trying different groups or different meets (when group attendees differ on different meets) is about, opening the pool of potentials. Just imagine if you met another person as great as @REDLINEZ750 (ok, realistically - even if they were 60% of RL's amazing connection with you?) in your local area too. Not to replace at all - dont worry! But to add extra people to your support and friendship network 🥰😍.

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?

@AlwaysMyself @REDLINEZ750 @Appleblossom

First things that came to my mind when reading the title in the wee hours this morning

- don’t walk in front of me as I may not follow

not awake enough atm to be able to focus on any other wording

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?

Thank you for your understanding my close connection with @REDLINEZ750 . 😊 I'm glad you do! He's very genuine and caring, hey! I think he's amazing! I think you're pretty amazing too! @AlwaysMyself I do appreciate and care about you! 💙

Sometimes it is easier (less risk?) to trust people anonymously online first, isn't it? Definitely! The threads I'm on are so supportive and the people are really beautiful!

To relearn that real people who care without self-interests exist! Yes, I've found a few wonderful woman friends. I don't spend any time with men because of my past! I haven't met any men out in the real world who can talk on an emotional level apart from my psychiatrist. I don't wonder why when I don't usually give them a chance! 💜

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?

@DahliaDreams you're talking all kinds of relatable sense there! 😊 although of course I am sorry that this has also been your experience. But I am really encouraged that you have been able to pause and think about it and reflect and realise that the things you are doing are perhaps not the things your body/mind need you to be doing right now. 😍

I like the article you found - that is indeed the idea of 'Behavioural Activation', and yes for most depressions it works. But I do note (and the reason I liked this article you found) that is also notes about how doing the right thinks for what you need is important - and centring it around your values.

It can be so hard to go against what society generally "says" people should do / aim. And for me, even harder to do things that go against what some psychology recommends for "typical" depression (where as mine has not been typical).

Where I believe this approach isn't quite so helpful (to me) is with chronic severe anhedonia. After some chats with AuntGlow around this she shared an interesting article with me, and I started a thread about it Recovering from severe chronic anhedonia -- because that's an inter-related part of my path this year. I do not experience the "positive feeling" when doing things that previously might have brought some positive feeling -- and I kept doing these things because that is what CBT (including behavioural activation) says to do for depression, along with all the things that society says I should be doing too! And just like you said -- burnout.


@DahliaDreams wrote:

I have been very focused on functioning over feeling my entire life. This all came about due to a complex set of life circumstances, where I suppose that basically, I was always 'rewarded' for getting things done and being productive. As I suppose we all are to some degree. There may be cultures that don't reward productivity, but I think ours does.

So... I think that maybe for me, the big problem was that I was doing things and achieving things that other people valued, rather than the things I innately valued within my own little soft heart.

And to go out and genuinely find the things that I value within myself when no-one is telling me what I should be doing is really scary and just plain hard. I suppose this is about identity.

Hence, I was always in chronic burn-out and very anxious.

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.


Our society, generally & traditionally, does reward/value "productivity". And there are benefits of that in ways, I'm not saying there isn't. But I do think that a lot of our culture/society does not recognise that there are times when people need to be non-productive or productive in a different way to the traditional sense -- especially in ill health.

We would never expect a leg-amputee without a prosthetic to compete in a marathon (unless they wanted to!) and if they did - we'd accept that it would be quite suitable for them to compete against others with similar physical challenges (and hence the Paralympics - right?)

... but do we treat mental ill health the same way...? Well, I like the think society is starting to recognise this as more people are speaking up about their experiences. For all the unfortunate things about the covid pandemic, I think it has improved/raised awareness of mental health. I see and hear a lot more about looking after mental health in pop-culture now that I did before.

I am curious (but always OK to not answer! never any pressure) if you experience positive feelings when you do do things that align with your values -- whether they be small or big things?

If you'd like to share about what those values are and what things you'd like to do that would align to them, you are 100% welcome to (but again, no pressure or expectation to).

My core values are around authenticity, caring, and friendships. When I first noticed my MH declining faster a few years ago I realised I had no sense of connection to people or purpose/meaning - my friends lived outside my region and we rarely had times to chat due to their busy lives (children and/or work) so I had lost the sense of connection and being able to share and support them through their ups and downs. I knew this was important for me, so I looked into ways I might be able to find the ability to do that -- and thus started volunteering in a youth mentoring program which aligned with my values around supporting youth early to build resilience and "get in early" to build these skills and/or link them in with supports for existing mental illness concerns.

Unfortunately I didn't feel the "positive" emotions/rewards from doing the volunteer work, but I knew it aligned with my values and I could see the positive impact it had on the youth I mentored so I kept doing it. In "normal" depression - this would trigger the pleasure/reward cycle -- that's the aim of behavioural activation. But sometime we get beyond that zone and that pleasure/reward doesn't trigger even for things we do value. However, as long as I had the physical energy to do the volunteer mentoring, it wasn't a negative thing for me and that is also really important.

For context, I have had moderate-severe depression since childhood; 25 years. Not episodical. Chronic melancholy with additions extra-depressed phases. Through-out the past 25 years I kept going to school, going to work, eating, showering, socialising, etc etc etc. As well as very frequent psychotherapy/counselling for the first 10 years of it. There was one year in the middle of this timeframe where things were so so bad that my mother suggested I should take a year off working to allow myself to focus on my health. This of course going against everything my general education taught about being expected to work and financially support myself (I had already declined my university offer at this time due to my health - something also that went against what I had been 'taught' at school). The good news it that year off (well, actually, I did still work 1 day a week and also did an online diploma and did increase work hours again later that year) did halt things declining, and did give me some space to re-engage a bit more with life and I improve from where I was at. But of course I felt I was then expected to be able to go back to working and supporting myself. And guess what? Yep, it started to decline again constantly over the years since.

It has taken me a whole year to agree to take time off working and "supporting myself" financially, because of the pressures and expectations that I perceive society and even family and friends have around working if you are physically able to - no matter the cost to your health or wellbeing. I am so so lucky my mother has been encouraging me to take time off work and offering to support me during that -- I don't think I would be doing that this year if she wasn't. but it is what I need if i am to improve. And the hardest think for me yet may be if I have to learn to accept that I can't (sustainably) work a regular job because of my mental health and fatigue. And then learning what that looks like for life -- finding adhoc/variable work opportunities that align with my values (possibly even only volunteer work unpaid if that is all that it suitable). Giving back to the community aligns with my values, so I am sure that it would involve some aspect of "helping people", even if it is as simple as stopping to chat to homeless/lonely/isolated people (who want to talk to someone) when I see them around places.

I hope that makes a bit of sense. Sorry I tend to write "essay-length" posts lol. Please don't feel pressured to read it all - or respond to it all (or within any timeframe).

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 look forward (but no obligation/expectation) to your thoughts if you feel up to it later / future time. 😊

"right people" and the freedom to follow or not follow sounds good.

I wonder whether "don't walk in front of me I might not follow" also suggests the need for people to walk alongside you and at your pace and in your direction? Or maybe I'm reading too much into what is not intentionally there? But I think those things are pretty darn important in a support to me also. 😊

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?

Hello @DahliaDreams It's good to see you again! Isn't this an interesting thread. I hadn't thought of asking myself those questions before either! Thanks for the connection to Behavioural Activation. I think anything is worth trying although I couldn't see it working for me. I'm often encouraged to go for a walk for my mental health, but I have no motivation or desire to do it. It's easy to say, well, do it anyway but impossible to do with depression (unless someone enjoys walking). I don't have depression at the moment but still refuse to do it. 😁

I was doing things and achieving things that other people valued, rather than the things I innately valued within my own little soft heart. That life is so easy to fall into! A lot of people I know live like this. I think there must be a balance in there somewhere. Because I was criticised so much as a teenager, my aim was to prove them right. I didn't even try in the end!

My therapy was the old Cognitive Behavioural Therapy (which I'm grateful for). Three years of intense psychotherapy helped me in so many ways but I'm still rebellious and don't like being told what to do. 😁 I guess most people don't!  

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 It’s part of a quote attributed to Albert Camus that’s about equality.

walking beside someone. Being beside on their path, walking along side them guiding, listening and, in general, just being there with them in the moment

walk beside me. Listen to me with empathy and not judgement. Take each step with me so I can learn by example, as compared to being told what to do.

Walk beside me and guide me. Guide me to stay away from pathways that are not beneficial for me. Don’t stay near the branch of the path, pointing down the darkening path and tell me not to go there

walk beside me and guide me. Guide me to see the feint glimmer of light. Walk beside me, helping me see the light gradually get bigger.

walk beside me, guide me and gently prompt me to help me learn. Don’t stay off to the side and tell me what’s right and wrong

@heartathome @DahliaDreams @REDLINEZ750 @Appleblossom

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

Beautiful part quote and well said @Flutterbug9

Take each step with me so I can learn by example, as compared to being told what to do. I agree with them 100 percent!

Don’t stay near the branch of the path, pointing down the darkening path and tell me not to go there Yep!

Don’t stay off to the side and tell me what’s right and wrong I still don't like being told. In fact, I'll probably do the opposite!

Sending hugs and love to you. I hope your day is okay! 💜

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 @heartathome 😍 both of what you just said deserves more than just a "support button" response. And I am so lucky that my support button is working too lol ! 🤣 (serious that GIF needs to be a "default" image in the forum I think that is available to every member with needing to be approved hahah I feel like it is now just a fun joke too about the button not working so often lol)

@heartathome that pic is spot on. So often I think "if only I or my supports knew this 20 years ago - maybe back then it would have helped" / helped more (less slow recovery).

Rebellious spirit isn't always a bad thing at all. It's like my strong-willed nature. It can be a good trait also. it's all about how we self-control it and use it. You would make the absolute best Rogue in Dungeons and Dragons my friend. You would kick-ass. 😎 I sometimes think "full of life" and "wanting a life different to the status quo" may be lumped as "rebellious" - but i don't think that is a negative type of 'rebellion'.

@Flutterbug9 all of what you said 😍😎.

I hope I can walk alongside you on your journey, and I hope you tell me when I am accidentally "walking in front" or leading you astray (rather a positive guiding friend). I do struggle to help others see glimmers of light, because I find it hard to know what people see as glimmers of light for themselves unless I have been told. But I can absolutely remind people of what they have told me are glimmers for them. 😍

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

Hello again my friend @AlwaysMyself

I can totally relate to what a difference it would have made had I got help when I was younger. It would have saved me from a lot of other trauma and heartache! I'm really grateful that I was found in my early 40's (twenty-five years ago). I feel like I was rescued and taught how to act and think in this world. I had no idea! After telling me that all my feeling were normal, one of the first things I learnt was that I didn't need to say everything I was thinking! 😆

You would make the absolute best Rogue in Dungeons and Dragons my friend. You would kick-ass. I like the idea of being a rogue! 😁 Did you/ do you still play it?

It's good to hear all rebellion isn't bad! My mother would have disagreed with you. As a Christian, the Bible talks about rebellion in a bad way. I've been stuck on that thinking for most of my life.

it's all about how we self-control it and use it. I agree it's about self-control and how I use it. I usually use it to protest against injustices against myself and others. I have also made some really poor decisions because of it. I do like to stir the pot though. 💜

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