self actualization and CFS/ME

[wciarci]

O.K., I have read alot of posts with a certain thread, I may be out of line here but i think it is worth considering. It appears that this disease may be stunting us from self-actualizing. Hence the sadness, desperation and the like. My question is this: How can we continue to develop and self actualize during this. I don't believe that the marker's for success apply to us or to anyone really. I don't believe that one need's a mate or a friend to actualize (Maslow?). How can we help those in so much pain except to point them to 'the journey'. We have to be happy in our own skin, be authentic, be pro-active, regardless of our illness. So my question is this, how do we ourselves continue to evolve and most importantly, help others to self actualize? Sympathy is great but really doesn't do anything constructive. I am not talking about specific symptom issues or the depair that we all feel at one time or another, but the very real and desperate core of despair and sadness that I see and feel from so many. How do we get on and get past this?

Wendy

 

[gracenote]

I view my illness, with all it's demands, as a spiritual practice. I have lots of opportunity to practice.

Sometimes I would just like to be shallow and clueless.

Good question, Wendy. I'm looking forward to other responses.

 

[HopingSince88]

I think one of the precepts of self-actualization is the ability to detach from people/stuff. It appears to me that this situation is something we all experience on the ME/CFS Journey, don't we? Illness pares away all the things that aren't important, and what is left is the truth of who we are. Sadly, we are stuck in a limbo where we aren't able to reach the joy of self-fullfillment...but maybe that will be our next step...if some of these studies/treatments come to pass. I know exactly how I want to spend my time. I know exactly who I am now. I know my strengths. I know my weaknesses. (sometimes I wish I was still distracted by real life).

 

[Sunday]

Oh Hoping, how well I know that wish to be distracted...I've always put a lot of time into my spiritual life, and I've found it's given me great tools for dealing with this DD and all its effects. Not to say I'm always happy, far from it. But this disease has really put a lot in perspective for me. Maybe because I got it when I was in my early fifties, a time when mortality makes its presence quietly known. It makes you consider what you want to become or do before you die. There are weird ways in which this disease has aided this process. I can't distract myself with this or that activity; I'm stuck with myself. Being laid down helpless and unable to use your brain is actually a prerequisite for many spiritual practices, so there are ways in which this disease has also been another spiritual practice for me.

I have had to look, I keep having to look, at how I spend my energy. I have found a lot of stupid ways I throw it away without thinking, and am making progress toward not doing those things. I have also found a lot of ways I have bound up energy, and I'm working on loosening it. I have remembered that human contact, beauty, and things that speak to the soul are the things that last, so they have gotten even more priority on my energy list. I have found what remains of me after I lose my personality.

Being low on energy has made me be patient and not rush through things; not being able to speak has taught me to listen better, and realize that even if I have an interesting thought or useful idea, I can wait until the right time to voice it; I don't have to rush right in and try to solve someone else's problems, giving me the illusion of control (or something). A lot of these things are what I have wished for all my life. I really want a life in the world to use all this understanding in. I don't know how much of one I can have, but I'm really grateful for the small activities I can do. I'm not always appreciative, but my appreciation and tolerance have opened way, way wider than before I was sick.

 

[jspotila]

Does anyone know how Maslow' self-actualization theory incorporates the role of difficulties and suffering? I only took Psych 101, so I have no idea.

Viktor Frankl's Man's Search for Meaning is an extraordinary book, and looks at suffering from a non-religious perspective. Frankl was a psychiatrist who survived Auschwitz, and his observations of behavior and survival in the camp were the foundation for the book. To summarize his thinking, humans overcome suffering by assigning meaning to it. The three basic categories of meaning are 1) create a work or do a deed, 2) new or deeper relationships, and 3) endure with dignity.

Man's Search for Meaning is pretty short, still in print, and very readable (not much jargon). It had a huge impact on me, along with the spiritual journey I've taken.

 

[wciarci]

Good replies all. I know that there is a triangle of self actualization and that basic needs must be met for this to occur, so people who are fighting for their very existence have a hard time of self actualizing. Even if we are not building our own shelters or hunting for food, we here have very real stresses and very real stress responses or at least, poor self responses. We are as weak and helpless at times as those really struggling for survival, we indeed feel that ourselves. Hoping, yes detachment is key I think, we are all stuck in this very self absorbed vortex and I don't mean that in a critical way, it is what it is, we are so hyper aware of our selves, our bodies, our illness, it is difficult to detach. Those who research, write, advocate seem to have a better handle on detachment. I just so want to help others here but feel impotent to do so, aside from the kind word or suggestion for a supplement.

Wendy

 

[HopingSince88]

On "detachment" - I have to say that I would like to find a better word to describe this state of being. For myself, I don't want to truly 'detach' from the world around me, the people in my life, and the events that shape us. I want to be able to connect to those things without them draining me of what little energy I have. I want to find a way to empathize without giving such a big part of myself. I want to find an existence that is not so demanding of my spirit. I know there must be a way to balance these things...and I want a word that is less impersonal than detachment to describe it.

 

[wciarci]

I know Hoping, detachment has negative connotations, perhaps objectivity? Myself I am trying yoga this summer. I do believe that a creative outlet would help us all. I just heard of a way of creating poetry, newspaper black out. It was described on NPR. Perhaps this is something to try, little energy output. You take a newspaper and a sharpie, find an article, find a word or phrase and black out what is not connected to it. I know that I feel much better when creative but the energy to be creative is sometimes a struggle.

Wendy

 

[blazes]

Being low on energy has made me be patient and not rush through things; not being able to speak has taught me to listen better, and realize that even if I have an interesting thought or useful idea, I can wait until the right time to voice it; I don't have to rush right in and try to solve someone else's problems, giving me the illusion of control (or something). A lot of these things are what I have wished for all my life. I really want a life in the world to use all this understanding in. I don't know how much of one I can have, but I'm really grateful for the small activities I can do. I'm not always appreciative, but my appreciation and tolerance have opened way, way wider than before I was sick.

Beautifully put! I have noticed this in myself. Your words have just put it into perspective better. In some ways I am thankful for this disease .... I know it sounds crazy.... Before this disease my life was fast paced, I shopped a lot and was quite a material person. The only thing I regret is missing the time with my daughter when I first got sick. However, since being sick, obviously my life has slowed down to a slugs pace, I have no money so I can't shop and therefore being such a material person is quite hard to be.

I am able to see things in people -- the positive things. See the positive side of a situation. I look at something and look for the positive outcome. When someone gives me a gift, I am nothing but thankful because whether it's something I'd have purchased for myself or not it's something that came because they thought enough about me and cared enough about me and that's all that matters. Not the material gift. The gift of caring.

When I'm able to walk outside I'm so thankful for even that little bit of energy and when I can walk back inside and not feel like someone has taken every ounce of energy and drained it right out of me....Its worth throwing a party! -- if it wouldn't take all my energy.....lol

We have so much to be thankful for....we just have to look for it. Sometimes it's hard to see --- VERY hard.

 

[wciarci]

Sunday and Blazes, beautiful posts, couldn't have said it better. We all can still learn and evolve, despite or perhaps because of our illness.

Wendy

 

[kit]

The boon of this illness (and its not worth having the illness, I'd rather wizen and grow some other way) is the loss of everything fake. Status, superficial friendships, friends who only like who you could be for them, rather than liking you for who you are. None of that was really good for me, but my life was full of it. It's a loss and hard to adjust to when it all falls away. At first it felt like losing everything. Now I know it wasn't everything. My life does feel very empty, but I believe that it can slowly fill again, and I intend to be mindful and vigilant about filling it with relationships and activities that are truly, deeply good for my soul. Thanks for the post Wendy.

 

[alex3619]

Hi

I always look for the positives in things. This wasn't a conscious strategy, it just kind of happened.

I have been able to set goals and achieve them. This doesn't happen all the time. It isn't always without cost (I now have more debts and am almost broke, and have worsened my health frequently in the past). It doesn't mean the goals are big - if I can make myself samething I enjoy for dinner, that is a goal achieved. If I can help someone's understanding or coping even a little, via internet forums for example, thats a goal achieved. If you can't do the big things, focus on the little ones. If you can't self actualize for everything, you can at least self actualize for something. The scope of what we can do is often drastically reduced, but within that scope we can still achieve, we can still do meaningful things. Just by being on this forum, every one of us has done something that can contribute to our collective well being.

I do, however, still have a deep unhappiness from not being able to achieve most of the big goals in life, to not be able to participate in mainstream existence. This is an ongoing struggle, and the only antidote I have ever found is hope, whereever and however you find it. That and finding ways to distract myself.

Bye
Alex

 

[Sasha]

What a great thread!

No time to say much just now but I found the eventual loss of ambition to be a real blessing and freedom during my first serious and long bout of ME/CFS; then I went into remission and ambition came back! Now I'm relapsed big-time and can't work at all. This thread reminds me that there are opportunities for adjusting to loss in a good way by realising what's essential in a way that healthy people may never do.

 

[SickOfSickness]

This thread is a bit aged, but I want to bring it back. It has many excellent posts. I want to discuss this more and especially see if we can come up with more specific ideas.

Regarding "detachment"... the post made by Hoping, I agree so much. That's what I want too and I think "shielding" is fitting. I don't know how to shield myself well. I believe the illness / symptoms make it harder to do so in a technical sense (e.g. it's harder to shield when your brain is foggy), and then it makes it VERY hard to do so because of the rift, because other people cannot understand since the illness is "invisible".

I have not been on this forum long, but I am impressed with many here... I do envy your strength. I am strong in certain ways, sometimes, but overall, not. I don't want to make this about me, but I want to make the point that, how and what we can do depends on how long we've been sick, personal preferences, our age, how much help we have from others, etc. (I feel my situation is different because I was sick before I learned much about life.)

Acceptance might be necessary?

I'm going to end the post here. I hope I remember what else I was going to say later.

 

[Dreambirdie]

This post is somewhat of a copy and paste job from a thread Wayne started on spiritual pragmatism. But I think it fits here too.

The big issue that CFS has brought up for me has to do with accepting where I am in the moment. I have not found chanting or meditation or any other spiritual techniques to be very helpful at all for moving me out of deep despair, or intense anger, or knee-knocking anxiety, that I sometimes feel about being sick. I think that the reason that they haven't worked for me is due to the simple fact that I can't change my emotional state, if I don't fully accept exactly where I am. This is a paradoxical and very uncomfortable quandary, that I have wrestled with a lot.

I do not enjoy being in despair, or feeling really pissed off, or being so anxious that I feel I will implode. But if I engage myself in trying to make those feelings go away, with whatever technique I think will serve that purpose, then it becomes a case of fear fighting fear, and that just spins me around in circles. As in.... THAT WHICH WE RESIST WILL PERSIST.

It's only when I am willing (and that is the key word) to accept and feel whatever it is that I do feel, that I find a true relief from it. It is an amazing and truly weird phenomena... I always forget and have to re-remember how powerful that state of acceptance and willingness is.

In my case, art (by which I mean ALL creative expression) is what usually helps me get me to the place of self-acceptance most fluidly. That's mainly because I give myself full permission to feel exactly as I do, and to express exactly what I feel in that moment. No feeling is judged as "wrong" or "bad." Anger, happiness, anxiety, peace, fury, tenderness, despair... they are all "on the same page" here... just different colors, shades, hues of the human experience. And there is no "right" way to express any of them. Every kind of expression from howling to whimpering, from big bold blasts of color smeared onto a canvas, to little gentle wisps with a teeny brush are equally accepted. No expectations of brilliance or beauty or harmony are allowed. All that is just mind interference, ego judgement and fear of the unknown.

The best part is the deep relief that comes from accepting whatever is. It is such a bitch how much we are programmed to think we must resist how we feel, and CHANGE ourselves, in order to be "okay" when the real truth is that all we have to do is really BE WITH ourselves, and that there is nothing wrong with us after all.

By this I don't mean that it's OKAY that we are ill, but rather that feeling whatever we do feel ABOUT being ill is okay. That's the acceptance that brings me relief.

 

[markmc20001]

I have had to look, I keep having to look, at how I spend my energy. I have found a lot of stupid ways I throw it away without thinking, and am making progress toward not doing those things. I have also found a lot of ways I have bound up energy, and I'm working on loosening it. I have remembered that human contact, beauty, and things that speak to the soul are the things that last, so they have gotten even more priority on my energy list. I have found what remains of me after I lose my personality.

For me CFIDS has been a process of reverse self-actualization. It's all about how I can let go of everything while being comfortable. After a gradual decline over 25 years, I have had to constantly scale back expectations and learn to deal with reality and the present. So I am trying to enjoy life now, instead of acheiving something out of reach. I can only imagine what my full potential might be, and that is a excercise in fantasy. Fantasy has proven to be my worst enemy always getting me in trouble thinking I will ahceive something I can not. I am gaining the ability to be in the present, enjoy simple things, and realize how precious my short life is.

 

[heapsreal]

im looking at life with cfs as a journey and a test of faith and to test my endurance, not physical but my mental endurance. its that old saying, dont work hard, work smart. working in the health industry it has made me more empathetic to other people and their illnesses.