English follows.

Une question à laquelle je réfléchis beaucoup depuis 2 ans et de plus en plus avec tout ce qui m’arrive récemment.

Qu’est-ce que c’est la qualité de vie pour vous? Je ne sais pas quoi y répondre pour le moment. Et la définition est bien sûr unique et propre à chaque personne, et varie dans le temps.

Bonus si vous êtes aussi autiste et/ou TDAH, car l’incertitude de plus en plus grande concernant ma santé n’est pas toujours facile à vivre...

#PTEN #Cancer #handicap #MaladieChronique

A question I've been thinking about a lot for the past two years, and more recently so with everything that's happening to me.

What does quality of life mean to you? *For myself I don’t know for now.

The definition is, of course, unique and specific to each person, and it changes over time.

Bonus if you're also autistic and/or have ADHD, because the growing uncertainty about my health isn't always easy to cope with...

#PTEN #Cancer #disability #chronicillness

@adelinej I am struggling with this question myself 😔
@GinevraCat I feel you. I don’t have the answer for myself for now.

@adelinej

In general: home, food, enough money for those, plus things that bring me joy (which includes the medications that allow me to function).
For my dopamine deficient brain: people to love me enough to fulfill my needs regarding constant validation.

It's simple to write, and yet frequently hard to maintain (more the first section than the last for me nowadays, which is nice).

@adelinej English is easier. Yes, I know I should be Frenching, but English is easier, especially for this kind of stuff.

This will not be terribly short, I'm afraid.

About ten years ago I started having failing health. I went to the doctor as I was able, did physical therapy, a bunch of stuff. All I knew was that my capacity was diminishing and I needed to be in a situation where that reduced capacity would not kill me.

That was the entire reason we started the move to France. To get into a house that was paid for (so we could afford to pay someone else for repairs)...that sort of thing.

As my health declined, I had to address this very question. I didn't start there though. I started with:

"Do I want to work until I die?"

I don't mean hobbies. I don't mean "put effort into <thing>". I meant work. As in, for a needed paycheck, competing against younger (smarter?) people, wondering every day if I would be unemployed tomorrow.

And I decided that no, I did not want to do that thing. And since my capacity was reduced, I also needed to reduce my reach.

I have an abundance of hobbies (if I ever get settled enough to pick one). I also have an abundance of maintenance required. Aaand...I've had to accept that I will probably still have to go back to work.

But, there are worse places than France to have a job. And that's probably at least a year down the road in any case.

But your question...what does quality of life mean? I don't mind earning to live, but I am absolutely sick to death of working to survive. I demand "my" time now. I prioritize my health (more) now, especially over my job. And I want to spend at least a little bit of time doing things that interest or engage me.

That feels modest enough to be reasonable to me.

@roknrol Thank you for sharing and English makes more sense, I get that. 😊

@adelinej quality of life in my current phase of life mainly comes from the ability to control/steer my life according to my needs and sometimes even my wishes.

After having a baby, losing most of my freedom through that (no parents or friends to support us) and completely burning out in the course of raising it, I now cherish every bit of freedom I get back. That includes working longer if needed!

I also enjoy the privilege of being a part-timer with no fixed work times (in principle. In practice, when you work together with others there are, of course, schedules to stick to. But they're not something that can't be shifted around a bit when needed)

And on good days I even sometimes have enough creative juice left in me to do arts, crafts, or build something.

@adelinej also, the relationship that I have with my kid is a net positive for quality of life now. The relationship with my husband could be better, we both work too much most days. But I still can't imagine a better person to spend every day with.