Disabled Imagination

[leela]

A couple of things keep cropping up for me as I peruse some of the threads here...
I wonder if anyone else experiences the conflicts that arise for me when trying to maintain a perspective on this extended visa to Bedland.

One thing that bothers me a lot is that, especially in my crashy phases, I cannot even imagine what my healthy life will be like. It's like I won't dare to even have a fantasy of a better life, because from here it does not seem possible...from here so many dreams, desires, or even simple expectations have been crushed, so relentlessly and repeatedly, that I don't dare imagine a future self that can work, dance, play, scuba dive, travel etc.

Of course on my good days, I will start planning activities, trips, projects that I've been unable to even imagine from Bedland. But before I know it, my GoodDays energy has been spent on boring catch-ups with laundry and dirty dishes, and Bam! Crashed again.

It seems to partly have to do with the conundrum of sorting out what my genuine limitations at this point really are (which of course shift continuously with the vicissitudes of this illness) and what limitations are somehow self-imposed through fear or despair or conditioning. It's a question of sorting out the difference between surrender and capitulation, and that never seems clear. Which aspects of my current situation do I gracefully accept? Which do I shake my fist at and rail against? Upon which limitations do I base my fantasy-future; because to dream of a future without them seems like an express ticket to disappointment.

The main thing here is, I have to plan my life, practically speaking--How much rent can I afford with no income? Which treatments will I go for? Will I ever be able to earn money again? All these very real, urgent issues require some sort of projection into the future, and if I based that projection on how I feel now.....the future is bleak. So many of the simple plans I make, like spending a day with friends, or even going to the grocery store, get foiled by the waves of illness. So how do I plan for the future? Do I go with the most debilitated and plan from there? No! I refuse! But to pretend I'm just fine, or will be tomorrow or next month or next year, just seems dishonest and a little bit foolish.

It's similar to the problem I've always had with "Affirmation" type approaches. It's my feeling the subconscious has to at least partway find truth in what you're affirming. To look in the mirror and say "I have abundant wealth" when you are in overdraft at the bank is basically just telling yourself a lie.

But I see the benefit in looking at the health that is there, looking at what is working, and good, and pleasant in all this, and I do it regularly. I see no point in lying to myself, though, and it is very difficult to tease out what really is (or will be) true and what isn't.

Does any one else go through this? Those of you who work with visualizations--are you easily able to foresee a brighter, stronger healthier life? Is that vision colored by your current limitations or is it no-holds-barred? Are there those who can maintain the balance between surrender and capitulation?

Crikey, this got long. Sorry.

 

[leela]

Oops I posted this in the wrong place! How do I move it?
Brain fart!

 

[Sasha]

Interesting question, leela (sorry, dunno how you move the thread - I think you PM one of the moderators and ask for help, maybe!).

I read that research indicates that for people with low self-esteem, giving themselves affirmations such as "I am great" actually makes them worse because it repeatedly confronts them with what they perceive as a lie that their mind automatically contradicts. Their inner dialogue goes, "I am great - oh, no I'm not". Oh, just found an account of the research here on the Time magazine site.

I agree with you (if I've understood your position correctly!) - that you can't convince yourself of something that you don't really believe just by telling yourself it over and over.

 

[HopingSince88]

I would say that I have difficulties in imagining all things. Part of this difficulty is perhaps conditioned by the reality of our situation.

But much of it is based on an inability to actually visualize pictures in my mind. This is one of the abilities I have lost with my illness. So I now mostly think in words, and not pictures. If someone paints me a picture in words I can very briefly picture it, then Poof! it is gone. It is very difficult to accomplish anything, even on a 'good day,' when you can't picture the process and the end result. I love words, but when thinking is nearly 100% verbal, it is really de-motivating.

On moving a thread, there is a thread that is entitled something like "place your threads to be moved here." I think you just copy and paste a link for this thread into a new message in that thread and a moderator will move it.

 

[jewel]

Leela, I think you have articulated one of the central quandries of this type of unpredictable chronic illness. Dreams are necessary for life, and so is truth. The truth may be that some times (even most times) the GoodDays energy will be used up on "boring catch-ups with laundry and dirty dishes," (and I so very much relate to this use of energy to recreate some minimal household harmony). Yet that is not a sustaining truth, if this were all we could come to expect from life. I think we can also have hopes and dreams with more meaning, even if they manifest on a smaller scale (a creative design on a sock for sock project rather than a larger artistic creation). I hope you find a way to keep your dreams alive, as you plan for your immediate needs, and that you find an understanding community here to support you. Take great care, J.

 

[leela]

Thanks, all, for your lovely replies. (And thanks for the tip on moving the thread, Hoping.)
You make a good point about the importance of deams, jewel, and I am afraid many of us have given up
(given in?) on them under the weight of our situation. It seems like a highly creative task to find a truthful
basis for our Revised Dreams--and yet isn't the point of dreams that they are fantastical? Still, even if I were fully
well, it would be a little silly to pursue a dream, say, of being an astronaut at the age of 47. If I wanted a dream I could actually accomplish, I'd be best served to give up on NASA and think of something else. (I've never wanted to be an astronaut, but it seemed like a good example.)
Do any of you still hold out for the dreams you had before? Or is anyone doing visualizations od impossible-seeming things and finding it fruitful?

 

[Otis]

Welcome Leela! Great topic.

I've looked the request to move this and think this forum is the right place for this. If there is strong disagreement please PM me with the suggested forum.

Otis (Admin)

 

[girlinthesnow]

Leela, Hi and thanks for posting this thread

But much of it is based on an inability to actually visualize pictures in my mind. This is one of the abilities I have lost with my illness.

Thanks for articulating this cognitive symptom Hoping Since 88. I have this difficulty too, it's as though the part of my brain which would imagine and visualize remembered and imaginary scenes has been switched off. I miss this part of my mind and this part of myself.

 

[HopingSince88]

Girlinthesnow...I think it is especially so of past rememberances, and points to some of our memory issues. It really takes a huge amount of energy for me to picture anything. I can do it, but it takes great effort and wears me out. And as far as imagination...which is more about the future, or how we want things to be, I can do this a little better, but it is still wearying. I am not sure what part of this is caused by feelings that dreams may not be possible due to illness, as this likely has some impact. But I think it is mostly an organic part of ME/CFS.

 

[mezombie]

Still, even if I were fully well, it would be a little silly to pursue a dream, say, of being an astronaut at the age of 47. If I wanted a dream I could actually accomplish, I'd be best served to give up on NASA and think of something else. (I've never wanted to be an astronaut, but it seemed like a good example.)

I've been struggling with this dilemma as well, Leela. As of last year, I started to see a bit of improvement -- after 20 years of being bedridden or housebound. It got me thinking that my health would exponentially improve and I would start being able to do---what?

The years between 30 and 50 are lost to me, as are many of the things one is able to do during that time. This has caused great sadness, but I am working on letting that go.

I also am not as well as I thought and am inadvertently overdoing it quite often.

I am learning to adjust my dreams to my current abilities. If you've been trapped lying down in a dark room for most of 20 years as I have, that still leaves a lot of realistic options.

Yet my focus prior to getting sick was on training for and building up my career. The friends I had from work abandoned me early on. Others stuck it out, but even they had their limits and I lost just about everyone.

So I would like to build up new friendships, and have succeeded somewhat though it is much more difficult at this age. I am also trying to be realistic and spend less time on the computer as that is still what makes me the sickest. I am able to take short walks, so I do that.

My dreams were very career and relationship oriented, so the reality of my situation has forced me to refocus them. Now I hope to get well enough to dance and to take up drawing or painting again. I'm using Meetup.com to find groups of people with similar interests to mine.

I'm glad you brought up this topic.

 

[HopingSince88]

Hello Mezombie,

I agree with your thought process here. I am approaching 60 years of age, and recently started to think about where I go from here. I am currently working part time, thankfully. But I have zero relationships, other than with my kids. Joining up with groups of similar interests is a good idea. If the current research helps to improve my health so that I can plug back into life, I will likely not go back to my former employment track (engineering-project mgt). It is like going through a mid-life crisis, I suppose. And assessing what the possibilities are in terms of my capabilities. This is hard to do when we don't really know if we will recover and to what degree we will recover. I have great hopes, though. Best wishes to you.

 

[mezombie]

Thank you, HopingSince88.

I think it is a lot like a mid-life crisis. I've found women who are empty-nesters are also going through something similar.

One thing that bugs me is that I turned down a number of marriage proposals before I came down with ME and and thus do not have a partner. I thought I had more time to settle down! For all I know this is a good thing, as I can't stick to any kind of schedule and it would be hard on anyone living with me to deal with the constraints of this illness. Still, this is something I've always wanted and it hurts to think it may be beyond my grasp.

So I find myself unmarried and childless, with a small and very dysfunctional family, and I have to admit it gets to me. It also raises questions when I do make it out to a social function. Not only am I sick, I am single and never married! I find people judge me not only for being ill but for never being married as well.

Recently I've been watching Weeds via Netflix. I am thoroughly enjoying it. Last night I watched an episode in which one of the characters, a woman whose marriage is on the rocks and was just diagnosed with cancer chats with the young son, a social outcast, of a friend.

She ends up saying something like, "We're freaks. People are uncomfortable with us". He responds with a sigh, "Yes".

Then she says, "It sucks, doesn't it?"

Yes, it does.

 

[HopingSince88]

Mezombie- I am a big Netflix fan. I will check out Weeds. I don't watch TV at all, so I enjoy stumbling upon these. Well - must get back to work...

 

[ixchelkali]

I know what you mean about not being able to visualize what your healthy life will be like. It scares me that often I cant remember what it felt like to be healthy. I look back at the things I did before I got sick and it seems like it happened to another person. In a way, I guess it did; the person I was before I got sick is not the same person I am today.

I mostly dont think too much about the future. For one thing, I have no way of knowing, or even guessing, if I will be as sick as I am now, or worse, or healthier. If I am as sick as I am now, I dont know how Ill manage. I used to be the sort of person who liked to plan ahead. Now the future looks kind of scary, and I dont see what I can do about it, so I just try not to think about it. Ill take what comes when it comes. Sufficient unto the day is the evil thereof.

You touch on so many of the hard questions of living with ME/CFS: what the real limitations are, the difference between surrender and capitulation, the difference between acceptance and resignation. How do accept that I have these limitations and still work to get better?

For me, the problem with positive thinking and affirmations is that they can be a way to perpetuate a false belief that I can control life. If bad things happen, well, I must not have been positive enough. You know? Like its more comfortable to believe that Im to blame than to accept that I dont have control, that sometimes things just happen. So now Im working on becoming comfortable with not being in control.

I can worry about the future, or not worry about it, but I cant control it. Sure, I can try to effect the outcome by my actions, but anything can happen. The older I get, the more I see that life is unpredictable. I do have a choice about how I spend this moment, so I choose to enjoy this moment as much as I can. I dont want to put off enjoyment until I get healthy. And Im not going to enjoy this moment if I spend it worrying whats going to be happening to me 10 years from now. I could be penniless or I could win the lottery; I could be bedridden or I could recover. But right now theres a bee working the poppies in my yard, and a duck flying over, and a sea breeze playing the wind chimes. And I have a load of washing to do. Its enough. Its not so much thinking positive as it is being aware of all that life has to offer right now, this minute.

 

[HopingSince88]

I can worry about the future, or not worry about it, but I cant control it. Sure, I can try to effect the outcome by my actions, but anything can happen. The older I get, the more I see that life is unpredictable. I do have a choice about how I spend this moment, so I choose to enjoy this moment as much as I can. I dont want to put off enjoyment until I get healthy. And Im not going to enjoy this moment if I spend it worrying whats going to be happening to me 10 years from now. I could be penniless or I could win the lottery; I could be bedridden or I could recover. But right now theres a bee working the poppies in my yard, and a duck flying over, and a sea breeze playing the wind chimes. And I have a load of washing to do. Its enough. Its not so much thinking positive as it is being aware of all that life has to offer right now, this minute.

Ixchelkali-This is the best bit of philosophy on how to live life with ME/CFS I have read on these forums. Thank you for writing this so exquisitely.

Sometimes I berate myself over my lack of overcoming my disability. I think about Steven Hawking and what he has overcome, and how he has achieved so much in spite of his health issues. But then I realize that sufferers with ME/CFS have disabled bodies AND disabled minds.

And in the end it truly is about the journey. The sound of the ocean waves lapping the shore, waking to the songbirds, smelling the earthiness of newly tilled garden soil, watching the full moon rise, watching a little one drift off to sleep. We may not be able to accomplish much, but we can still experience much of life's beautiful moments.

 

[Sallysblooms]

Ixchelkali, I do love what you said. I was able to go out with my hubby for our anniversary tonight. Lovely place, we were toasting to a better year for my health. Later, I got dizzy while eating my entree. It slowly got better....

I have improved after a HORRID year. I have had this for 17 years, but it got a bit better, then much worse. Anyway, remember Matty, the sick little boy that wrote poems? He said we should "Play between the Storms." I think of that every day. I have fun when I can, before the next "storm."

 

[girlinthesnow]

HopingSince 88 Once again you have articulated so clearly the core of what I was trying to express

I think it is especially so of past rememberances, and points to some of our memory issues. It really takes a huge amount of energy for me to picture anything. I can do it, but it takes great effort and wears me out. And as far as imagination...which is more about the future, or how we want things to be, I can do this a little better, but it is still wearying. I am not sure what part of this is caused by feelings that dreams may not be possible due to illness, as this likely has some impact. But I think it is mostly an organic part of ME/CFS.

There are two parts to this; the normal sense of sadness at years of memories lost due to life not being lived as it would have been if we had been well. Everyone who has chronic illness shares this sense of sadness.

The second part may be unique to ME/ CFS because we are disabled in body and in mind, parts of our minds are inaccessible and this causes a different kind of sadness and distress. Even to begin to describe it to people without ME/CFS causes confusion and disbelief. It really is more akin to traumatic brain damage than anything else.

It also marks the divide between major depressive disorder and ME/CFS as those with MDD will have all the emotional feelings attached to the first but will have no understanding of the second at all because it is 'an organic part of ME'.

 

[kit]

Hi Leela,
I can relate to your thoughts on dreams and limitations, what is real and what is self-imposed. I feel like I am standing on a seesaw (figuratively), trying to maintain balance between hanging on to my dreams and visions for the future, and coming back into the moment and being with the reality of right now. If I dream too far out ahead, I only run into frustration at my inability to realize my dreams. If I don't dream, my life begins to close in, and the vital energy of my soul begins to dissipate. Dreams are important, I think. They remind us of who we are.

Some ways I have coped with it is just by keeping lists of what I would like to do some day, or journaling on my future visions, and saving it under a"Future" file. Then I stop myself from ruminating on things I can't do now.

It's also true it is very hard to make concrete plans. Financially, I tend to plan for the worst case scenario, and try to enjoy the little things. Any ways that my life can open up from there is nothing but a blessing. Take care.

Kit