Hi All,
I've been thinking alot about uncertainty.
(especially after GP said: Would rather tell you you have a terminal illness, that way at least you can Plan/make best of your [remaining] time!
I certainly do Not want a clearly-terminal illness, but I feel very much this way about Uncertainty: it the Worst part! Or Top-5 worst aspect of this illness. Both on short time scales (day-to-day) and the longer-scales (decade, life plans, etc)
NB: I am sure uncertainty has been written about somewhere on this forum, but my quick search did not bring up a post-- and I'm tired! So prefer to ramble myself
Though as 3Am is well past my "stop thinking" time... the specific question:
does anyone have a good resource regarding coping with uncertainty (of illness in general/this illness?)
A friend who went through, and survived lukemia, has anxiety attacks now about recurrence. There seems to be many books written about uncertainty and cancer recurrence--
This illness is different of course in (many ways-) and especially-- that most of us ( i think) are always sick, but sometimes much worse, sometimes somewhat better-- and this level/where one is in the spectrum profoundly dictates what we can do day-to-day AND how we make big-life decisions
"big-life" meaning: Try to work again? Think of having children? Healthy enough to date? How much effort/time to put into treatment/research, and how much of precious energy to use to Enjoy life? etc.
I think much of this all depends on illness severity, stage of life, age, etc--how one thinks about uncertainty..as well as probably spirituality/faith play a role too.
( I am largely agnostic in regards to specific religion--but Buddhism is a big part of my life--more philosophy I think-- and I consider myself/feel spiritual...)
For me at 30, and only last year having to fully stop working, I find myself thinking alot about relationships-- How best to communicate uncertainty of this illness. To family, friends, and to prospective partners.
e.g. how to think (for self) / talk (to others) about:
Will I get better (enough to support self)--during my lifetime/during next decade? Will I want to/be able to have children?
(financial dependency, and whether able/will have children, seem to be the biggest deals for me given gender/lifestage...apparently!)
I wonder if at baseline, it is "simplest " to assume the worst. Eg, No, I will not be able to earn money--so assume govt/partner must support me; and No, I will not be able to have children..(so tell prospective mate this...)
While I think it is important to know there is hope (I truly DO feel that way)-- how much to "plan" on it--getting better vs worse-- and whether to Communicate that hope to others--- So Dam tricky!
At energy level 3-4, not supporting self/not having children are clearly the case now. And I am cognizant that so far, I have slowly gotten worse over time.
But my immediate hopeful thought: I also have never stopped working--maybe I can conserve tiny bits of energy (once on SSD). To be honest, I am in a phase where I am TOTALLY enjoying life--using my little bits of energy just to see friends, date. Appreciating so so so so wholeheartedly those amazing moments hour(s) of Play! Brings me to tears, that overflow of appreciation!
But I think It is a bit like I think this little bits of energy will disappear any moment!
(I can't do this for long though-- I have the blessing of family support as I recover from particularly bad spell/bed boudn...I need to start using the little bits of energy to apply to SSD etc. Will resume seeing specialists again, too).
Hmm, fatigue rollls in stronger... best wrap it up:
The general question again: Any good resources about dealing with uncertainty?
For the most part, my "response" has been: enjoy the moments--whenever I can. But balancing that with building toward potential future is tough. that 's true for everyone, but our Uncertainty is leagues beyond the general uncertainty in life (all living things face)--
Perhaps a second specific question is: what percent of your little energy (no matter how much it is-- do you spend researching/seeing docs, Vs. "Living" in the present--seeing loved ones, appreciating xyz etc? What percent is work toward better/future vs. appreciating now?
(is there a magic ratio?????????
(I realize almost all the above presumes not being bedridden 24-7. I have been bed bound but only briefly a few months..My warmest thoughts are with those of us currently bedbound. )
Thanks for your reading energy, thought-energy, etc (energy to decipher the ramble... )
Peace,
Htree
I've been thinking alot about uncertainty.
(especially after GP said: Would rather tell you you have a terminal illness, that way at least you can Plan/make best of your [remaining] time!
I certainly do Not want a clearly-terminal illness, but I feel very much this way about Uncertainty: it the Worst part! Or Top-5 worst aspect of this illness. Both on short time scales (day-to-day) and the longer-scales (decade, life plans, etc)
NB: I am sure uncertainty has been written about somewhere on this forum, but my quick search did not bring up a post-- and I'm tired! So prefer to ramble myself
Though as 3Am is well past my "stop thinking" time... the specific question:
does anyone have a good resource regarding coping with uncertainty (of illness in general/this illness?)
A friend who went through, and survived lukemia, has anxiety attacks now about recurrence. There seems to be many books written about uncertainty and cancer recurrence--
This illness is different of course in (many ways-) and especially-- that most of us ( i think) are always sick, but sometimes much worse, sometimes somewhat better-- and this level/where one is in the spectrum profoundly dictates what we can do day-to-day AND how we make big-life decisions
"big-life" meaning: Try to work again? Think of having children? Healthy enough to date? How much effort/time to put into treatment/research, and how much of precious energy to use to Enjoy life? etc.
I think much of this all depends on illness severity, stage of life, age, etc--how one thinks about uncertainty..as well as probably spirituality/faith play a role too.
( I am largely agnostic in regards to specific religion--but Buddhism is a big part of my life--more philosophy I think-- and I consider myself/feel spiritual...)
For me at 30, and only last year having to fully stop working, I find myself thinking alot about relationships-- How best to communicate uncertainty of this illness. To family, friends, and to prospective partners.
e.g. how to think (for self) / talk (to others) about:
Will I get better (enough to support self)--during my lifetime/during next decade? Will I want to/be able to have children?
(financial dependency, and whether able/will have children, seem to be the biggest deals for me given gender/lifestage...apparently!)
I wonder if at baseline, it is "simplest " to assume the worst. Eg, No, I will not be able to earn money--so assume govt/partner must support me; and No, I will not be able to have children..(so tell prospective mate this...)
While I think it is important to know there is hope (I truly DO feel that way)-- how much to "plan" on it--getting better vs worse-- and whether to Communicate that hope to others--- So Dam tricky!
At energy level 3-4, not supporting self/not having children are clearly the case now. And I am cognizant that so far, I have slowly gotten worse over time.
But my immediate hopeful thought: I also have never stopped working--maybe I can conserve tiny bits of energy (once on SSD). To be honest, I am in a phase where I am TOTALLY enjoying life--using my little bits of energy just to see friends, date. Appreciating so so so so wholeheartedly those amazing moments hour(s) of Play! Brings me to tears, that overflow of appreciation!
But I think It is a bit like I think this little bits of energy will disappear any moment!
(I can't do this for long though-- I have the blessing of family support as I recover from particularly bad spell/bed boudn...I need to start using the little bits of energy to apply to SSD etc. Will resume seeing specialists again, too).
Hmm, fatigue rollls in stronger... best wrap it up:
The general question again: Any good resources about dealing with uncertainty?
For the most part, my "response" has been: enjoy the moments--whenever I can. But balancing that with building toward potential future is tough. that 's true for everyone, but our Uncertainty is leagues beyond the general uncertainty in life (all living things face)--
Perhaps a second specific question is: what percent of your little energy (no matter how much it is-- do you spend researching/seeing docs, Vs. "Living" in the present--seeing loved ones, appreciating xyz etc? What percent is work toward better/future vs. appreciating now?
(is there a magic ratio?????????
(I realize almost all the above presumes not being bedridden 24-7. I have been bed bound but only briefly a few months..My warmest thoughts are with those of us currently bedbound. )
Thanks for your reading energy, thought-energy, etc (energy to decipher the ramble... )
Peace,
Htree