AlwaysMyself Senior Contributor
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:
- What is it that is not OK at the moment?
- What would it need to be like for things to be OK/acceptable for me?
- 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!
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):
- Not have chronic pain
- Not be exhausted all/most/a lot of the time
- Be able to experience positive emotions/feelings/enjoyment
- 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.