Ambition and ME/CFS

[soti]

Edited: I posted this in the wrong subforum! Can someone move it for me? Thanks.

A topic I've been thinking about, curious to hear others' experiences (with an especial welcome to more severe sufferers).

Before ME/CFS we all had various ambitions to achieve various goals, even if the goal was to have a good time. As Kurt Vonnegut says, "we are here on Earth to fart around, and don't let anybody tell you different.".

Obviously we've all had to let go of some or all of our old goals. But we generally find new ambitions and new goals even if they are "small".

What I am thinking about is... how has your relationship to ambition itself changed? Do you feel yourself to be more ambitious? Less ambitious? Or is it the same? Is it a good thing to be ambitious? Or do you find it more useful to let go of ambition, or to see it in another way? Do other people see you as more or less ambitious than you were, and what is that like?

If you had strategies to achieve your goals before (e.g., break large things down into small pieces, get social support, research technology, make lists, hone your self-talk,...), are you still using those strategies, or different ones, for your new goals? Why?

For me, I still feel myself to be ambitious but I feel like I fall down a lot because I can't set appropriate goals. Or I set appropriate goals, but then ME happens, so I have to let go of even the little I was trying to do, so I feel crappy because I can't do things. Then it takes a while to build myself up again.

A lot of what normals do to pump themselves up is linked to seeing yourself as ambitious, as an athlete, etc. and pursuing a program, ritual, or routine - think of getting up in the morning to run. But how do you (generally, but also you personally) stay ambitious, and see yourself as ambitious, and keep your eyes on your new goals, when there is so much frustration, variability, and payback from day to day?

I guess I'm looking for some support in holding ambition more loosely without letting go of it. And also I'm just interested to hear how other people are getting on with this sort of thing.

 

[Shakota]

I have fibromyalgia with PEM, dizziness, etc. I am not quite sure that I strictly meet the CFS/ME Canadian guidelines, but this website sure sounds like the right place for me; I'm at 35% normal (Bruce Campbell's scale). OK OK.

I have been ambitious (still want to write that novel, learn more French and Spanish,do photography, art, cook new food, travel) and I don't think those ambitions ever go away for me. Sure, when PEM hits, or pain reaches a certain level, I get depressed and down on myself globally, for every unfulfilled ambition. But these ambitions were largely unfulfilled even before I got sick 20 years ago.

I think, given the necessity of letting go of so much of emotion and wishes that accompanies this illness, I have to remember each day to honor my ambitions. Use some of good hours I have (between 11am and 2pm when my mind is clearest and body not yet in pain), to work on writing, language learning, etc.

I'm sure it could help to winnow my ambitions down a bit, simplify what I think I must do in life with them, but no, not giving them up because they are part of my identity, such as it is. For me, the writing and language are my primary ambitions, the others can be accessed periodically.

Having motivation when one is depressed (because of symptoms) is hard. I am trying to seek support (motivation) by turning up at a new group and keeping an open mind, learning from others. I had a pleasant surprise at a writer's group where I could just expound on books, authors and films. And be understood.

Thank you for opening this discussion, soti. What are your ambitions?

 

[soti]

Oh... my ambitions. Well, I still have a job that means a lot to me. I work from home with *extremely* flexible hours. I am concerned I am falling behind, but I would still like to at least do my job (maybe even well, but I'm losing hope of that). It is part of my identity too. I think these are the hardest to give up.

Also a big thing for me, I have an ambition to have a daily routine, though my erratic sleep does not permit this, which drives me nuts!

Other ambitions too about family.

I like the phrase "honor [your] ambitions". I also am interested in the thought of simplifying them. Or keeping them even if impossible? Apparently my lizard brain thinks I will get better, and it's very hard to explain to it that it should let go of these ambitions.

I guess it's the variability that bothers me the most. So if I feel ill, I would hope to be able to downshift my ambitions somehow toward the goals that matter: taking care of myself. But instead I feel like I just drop everything and get very down about it and it takes me a while to regain my mental footing.

 

[Shakota]

My computer just erased my elaborate reply. I guess it's my editor.

Yes, that sleep variability and other stuff like it can make your reptile brain less optimistic about anything, much less recovery.

I discovered this week (I've only had this fibro&fatigue thing for 20 years now) that I can get away with 3-5 hours of being out in the world, as long as it's somewhat pleasurable and only pay for it for one day after. Or maybe, being that I'm a mammal, I've got some spring energy (I'm in California) and whatever I said is just not true, because from one day to the next, there is no real predicting cause and effect, outcome. No recipe for living, no real routine, etc.

How long have you been dealing with ME? It's hard when you have a family and you feel torn between taking care of yourself and wanting to participate fully with them. Simplifying is key for. Also, mañana mentality. Writers, after all, get their best ideas during daydreams. Frantic whipping myself: why aren't I doing such and such (ambition-wise) is not helpful.

I guess it's zen, and acceptance, mental flexibility and creative thinking, talking nice & avoiding the cognitive distortions (CBT) during a downturn.

I'm just really grateful sometimes to be ok with no ambition other than to enjoy the moment. But being around other people who understand me is so important. Sorry, I just took my pain meds and my thoughts are going all over the place. Maybe it's that I still hold my ambition, like an old dream (such as wanting to be a fantastic ballerina), it's not applicable anymore, but it is so engrained in early youthful identity, same thing with being a writer. It's like I have the ambition and it sits there within me, still aflame but I don't chastise myself about it anymore. it's a friend I haven't seen in awhile. I could go visit...

 

[Rebeccare]

It's interesting that you brought this topic up now, because this week I my ambition and my CFS collided in a way that made me cry.

On a day to day basis, I am not ambitious. I try to just live my life as best as I can within my limits, and I have learned to be content with whatever I'm able to accomplish. I try to get outside for at least a few minutes every other day or so. But if it doesn't happen, no biggie. And even before I got sick I wasn't terribly ambitious either. I never needed to get straight A's in school, never wanted to be president of the student council, never needed to be a star athlete.

Since getting sick I rarely think in terms of setting goals and accomplishing them. Instead, I have a little mental list of things I hope will get done as some point (sweeping, wiping down the kitchen counters, writing an e-mail to a friend). I just do whatever I feel up to, and if something doesn't get done then it just stays on the list, but it's no big deal and I generally don't feel bad about it. Then at the end of the day I take stock of what I did and feel proud whatever I did do. Sometimes these are very little accomplishments (dishes to the sink, or opening the window shades so I get some sun), but I am sure to acknowledge them.

Which I was so surprised this week when I cried after I was offered my boss's job (she's taking on another position in our organization), because I knew that I couldn't take it. I work as a special educator for a nonprofit, and I was offered the position of the director of the program I teach in. The offer immediately brought tears to my eyes. AlI could think was: here is an opportunity to move forward in my career, to make more money, to really push myself...and I can't even consider taking it because I'm simply not capable of doing that job in my current condition.

The more I thought about it the more I realized that this position would be a terrible fit for me even if I weren't sick! It would mean shifting from mostly working with children (which I love and am good at) to doing administrative work and supervising other teachers (which I dislike and am not so great at). But I was sad because I had to turn this job down before giving it any consideration--my fatigue took away my ability to give the job serious consideration and choose whether or not to take it. My fatigue chose for me, and that was hard.

 

[E.man]

Losing ambition and sense of humour after a symptom increase. Can't get much done and it's not funny.

 

[Shakota]

It's interesting that you brought this topic up now, because this week I my ambition and my CFS collided in a way that made me cry.

On a day to day basis, I am not ambitious. I try to just live my life as best as I can within my limits, and I have learned to be content with whatever I'm able to accomplish. I try to get outside for at least a few minutes every other day or so. But if it doesn't happen, no biggie. And even before I got sick I wasn't terribly ambitious either. I never needed to get straight A's in school, never wanted to be president of the student council, never needed to be a star athlete.

Since getting sick I rarely think in terms of setting goals and accomplishing them. Instead, I have a little mental list of things I hope will get done as some point (sweeping, wiping down the kitchen counters, writing an e-mail to a friend). I just do whatever I feel up to, and if something doesn't get done then it just stays on the list, but it's no big deal and I generally don't feel bad about it. Then at the end of the day I take stock of what I did and feel proud whatever I did do. Sometimes these are very little accomplishments (dishes to the sink, or opening the window shades so I get some sun), but I am sure to acknowledge them.

Which I was so surprised this week when I cried after I was offered my boss's job (she's taking on another position in our organization), because I knew that I couldn't take it. I work as a special educator for a nonprofit, and I was offered the position of the director of the program I teach in. The offer immediately brought tears to my eyes. AlI could think was: here is an opportunity to move forward in my career, to make more money, to really push myself...and I can't even consider taking it because I'm simply not capable of doing that job in my current condition.

The more I thought about it the more I realized that this position would be a terrible fit for me even if I weren't sick! It would mean shifting from mostly working with children (which I love and am good at) to doing administrative work and supervising other teachers (which I dislike and am not so great at). But I was sad because I had to turn this job down before giving it any consideration--my fatigue took away my ability to give the job serious consideration and choose whether or not to take it. My fatigue chose for me, and that was hard.

 

[Shakota]

It's interesting that you brought this topic up now, because this week I my ambition and my CFS collided in a way that made me cry.

On a day to day basis, I am not ambitious. I try to just live my life as best as I can within my limits, and I have learned to be content with whatever I'm able to accomplish. I try to get outside for at least a few minutes every other day or so. But if it doesn't happen, no biggie. And even before I got sick I wasn't terribly ambitious either. I never needed to get straight A's in school, never wanted to be president of the student council, never needed to be a star athlete.

Since getting sick I rarely think in terms of setting goals and accomplishing them. Instead, I have a little mental list of things I hope will get done as some point (sweeping, wiping down the kitchen counters, writing an e-mail to a friend). I just do whatever I feel up to, and if something doesn't get done then it just stays on the list, but it's no big deal and I generally don't feel bad about it. Then at the end of the day I take stock of what I did and feel proud whatever I did do. Sometimes these are very little accomplishments (dishes to the sink, or opening the window shades so I get some sun), but I am sure to acknowledge them.

Which I was so surprised this week when I cried after I was offered my boss's job (she's taking on another position in our organization), because I knew that I couldn't take it. I work as a special educator for a nonprofit, and I was offered the position of the director of the program I teach in. The offer immediately brought tears to my eyes. AlI could think was: here is an opportunity to move forward in my career, to make more money, to really push myself...and I can't even consider taking it because I'm simply not capable of doing that job in my current condition.

The more I thought about it the more I realized that this position would be a terrible fit for me even if I weren't sick! It would mean shifting from mostly working with children (which I love and am good at) to doing administrative work and supervising other teachers (which I dislike and am not so great at). But I was sad because I had to turn this job down before giving it any consideration--my fatigue took away my ability to give the job serious consideration and choose whether or not to take it. My fatigue chose for me, and that was hard.

 

[Shakota]

RebeccaRe: I get very emotional about not being able to work. When I hear others talk about a new job, I think: Oh, I could do that. Well, no, actually I can't and it still hurts after 17 years of not being able to work. I had pain associated with every part of my body, pain with cool air currents, just a huge amount of pain and of course, crushing fatigue. Tried at Vocational Rehab to do something, anything, body would not cooperate. Tried various part-time jobs, always could not function more than a few months.

The work issue was (and still is) a deep regret in my current concoction of "acceptance." I was studying to be a nurse practitioner after 18 years of RN work. I, too, am so much better at one-to-one work than being a boss (I don't mind being a team member, that solidarity is wonderful). I just don't want to spout off corporate bullsh*t.

 

[Rebeccare]

I was studying to be a nurse practitioner after 18 years of RN work.

Nursing is a tough job to do with physical and/or mental fatigue. I often wonder if I would be able to work more or do more if I had a desk job instead of being special education, which is also not good for tired people. But I don't really want to do something else! It's hard to not be able to do something you love and are passionate about.

 

[HowToEscape?]

I had ambitions, yes, and now they are impossible. Now my ambition is to have a place to live, have a place to live that hasn’t filled with random noise,Surrounded with filth, and isolated. Whether I will manage that is seriously in doubt. I have found no avenue to accomplishing anything of value now that I am disabled.

 

[soti]

The thwarted ambitions are so painful. So universal with this illness, but the contents of the ambitions we have had to let go of are so individual to each of us and so intertwined with our senses of identity.

I do think the Protestant Reformation has a lot to answer for in terms of identifying value with accomplishments (we can debate the history of this ) but there's no denying it's part of a lot of us. And there are a lot of feelings of shame that come with being unable to do.

Maybe this is too ambitious but I would like a reunderstanding of ambition for pwme, complete with motivational posters. Instead of "faster, stronger, harder," - "slower, gentler, more consistent"? Ambition to pace. Ambition to do exactly what we can. And of course ambition to let go and grieve our ambitions.

Seeing ourselves as having a body that is already pushing its limits. We're athletes!

Here's another thought: I hate having to switch gears from pushing myself, to pushing myself to rest. It makes my head spin and there's a lot of friction for me in going from one gear to another. I want to have motivational things I can consistently say to myself whether the goal is to do or to rest, and to smooth out that friction because lord knows I can't stand to lose any energy to that. So whatever it is, needs to be super simple for brain fog times.

 

[Rebeccare]

I do think the Protestant Reformation has a lot to answer for in terms of identifying value with accomplishments

Where I'm from there certainly is a strong New England Puritan work ethic. I remember that my mom once broke her wrist on a Friday, had surgery on Saturday, and was back to work (as a school nurse!) on Monday. Or one time my dad was hit by a car as he was biking to work, but after he was done talking to the police he bent his bike back into shape and pedaled on to the office. From my parents I learned to push through anything to work and fulfill my obligations. It was a good lesson, but now I realize it was the wrong one for me in my current state. Now I'm trying to redefine ambition as you've described, but it's so hard to go against the values I was brought up with.

My wise fiance says that resting is my work. So perhaps I should make my ambition to rest more.

 

[Shakota]

Soti, I can identify with "makes my head spin," (switching gears between ambitions to do things and ambition to rest).

Rebecca: very interesting comment about New Englanders. I grew up with a father whose family settled in MA in the 1600s. And not only is there that push push push and to never relax, but a denial of pleasure and above all, emotion (never show them, never hug your children). Don't like it!

Maybe ambitions are sometimes just cranial noise but at other time, a deep need that should be explored.




But going back, seems that the idea of gratitude is very meditative for me. Also, the urge to simplify: perhaps that's my ambition now.

 

[jpcv]

I've been ambitiously lazy all my life, work is a part of life , not the reason to live.
That's why I decided to move from a big city with the best technology and medicine in the country to a smaller city where I can live better, that was 15 years ago and I never regretted.
I am very grateful that when I got sick in 2015 I had already achieved a lot in my work as a physician, so right now I can work part time.
But we all want to do things, right now I have some plans for the future but I don't know if I'll be able to put them in practice
see http://forums.phoenixrising.me/index.php?threads/should-i-start-a-me-cfs-clinic.57886/

yes, our work is learning how to rest

 

[Eneia]

I’ll say one thing today about this (lest I start crying)
ME is a shitty illness. For many other handicaps, there is no going back, so it’s loss, grief, acceptance. For us, it feels like we could recover (example of a few days where we were back to normal, I had one in 30 years myself), so how can we grieve and accept and start adapting expectations to what is possible? What what about crashes, good days, that mean we never know how we’ll be?

My ambitions are still there and everyday I can’t help hating looking normal while being useless and not matching my life with my ambitions and values. (And that’s where psychological management of the illness with Gupta and similar can help, and they did a lot for me).

I’ll now shut up and read everyone’s tips on this because I need help with this too, my answer isn’t that helpful I know...

 

[KathMorcos]

I've always been ambitious and still am. I have pushed through to achieve my goals until this year as my CFS and fibromyalgia became significantly worse. I still have goals but I break them up into very small bits, it'll take a very long time till I achieve what I want but that doesn't matter as long as I get there. For me it's about knowing my limits and working within them.