Potential Topics for Discussion

brynn · May 7, 2003, 7:56am

Here are some of the many topics that may be discussed here. Feel free to choose one that interests you and start a new topic thread, describing your experiences connected with it.

Or start a discussion on whatever is on your mind, or in whatever way you need support. This place is for YOU!

Loss/grief/sadness
Anger and fear
How to set limits on time and energy demands
Talking to others about your illness or how to avoid it
How our roles in society and relationships have changed
Maintaining self-esteem
Maintaining and/or dealing with loss of independence
Surviving isolation
Depression and/or suicide
Asking for and accepting help
Finding hope and happiness
Healing power of humor
How to communicate effectively with doctors
How to make the medical system work for you
Health and disability insurance
Faith and its role in health and healing
Alternative and traditional treatments
How to be assertive
Tips and tricks for surviving CFS (mental & physical)

WholeBon · December 31, 2003, 6:30pm

Dear Brynn and others,
I am very very glad I have found this site. I am looking forward to contributing here as much as I can (within healthy for me boundaries of energy,time,etc.).
I am again very reassurred to have found this site, and really want to share about many of the topics you have suggested. Even if it is only a few of us here, that to me is a gold mine. I am in a 12 step on-line group and have daily family responsibilites, but this year I am hoping to get the support I have needed and missed for a very long time for emotional and physical health challenges(I have multiple chronic illnesses, chronic pain, am a single-parent of an adult learning disabled child, on disability, but very isolated due to illnesses(including depression and anxiety disorder). But I have a mighty spirit, am a professional counselor or was for nutritional weight loss and so want to be of service to others in this life as well as (difficult for me) to ask and receive support and help myself. Here's to a much happier and healthier New Year for all of us. Love from Wholebon

WholeBon · January 1, 2004, 11:52pm

Dear Brynn and others here,

One of my greatest challenges of recent years has been isolation, how to connect with others in a positive and affirming environment on a consitent basis. As probably a lot of you may know already, having CFS and/or other energy depleting illnesses plays havoc on planning and committments at least it has for me now for over a decade.

Part of the problem in my case has been a persistent resistance to accepting myself as someone who really has a disabling health condition(s), and the feelings of failure and inadaquecy that this triggers for me. It has been a vicious cycle then of lowered self-esteem, and the feelings of loss and anger and inevitably depression that has really kept me imprisoned in my own private hell.

I only recently got on-line, and this has been the beginning of I hope a new chapter in my life, and learning to cope with CFS.I find that in order to feel good about myself I need to feel prductive,and why for me CFS has been so devastating.And I have a family(adult learining disabled son and a partner of 15 years). So, guilt from not being able to meet my own and others expectations of me has contributed greatly too to overall poor self-esteem.

In all honesty, I really never had solid self-esteem and I have always had problems with depression and anxiety.But my self-esteem came to an all time low last year, when I entered a partial care program for depression, after learning my partner had run up thousands in debts. The good news is that that is where I started to learn how to use a computer or at least become less afraid of one!

Since that time, I joined an on-line 12 program for myself and recently experienced there more and more difficulty with having others relate to me because more and more of my posts were around my chronic and persisitent and worsening health challenges.

So here I am. I started out this post by wanting to talk about isolation and I seem to have strayed off-topic.But trying to start talking in a group of others who have CFS is my way of trying to connect here.

I am also learning new ways of coping with illness:for me, trying to cultivate social connections whether here or in real time with individuals that like me for myself, not because of how I can problem-solve etc. is very important for my emotional well-being. As a former professional counselor, I think got stuck in a care-taker role, and have not been great about having relationships where I get my needs met for support in equal measure.

Not that I do not receive a wonderful lift from being of service to others. I do, yet I am learning that I need to be able to ask for and receive help equally. This has not been easy for me, as I think when I am feeling really needy, I tend to scare people away!So, please bear with me, as I am trying to learn that I need to ask as well as to give.

Sorry I am rambling here, I will wish you all a very happy 2004 for now. Wholebon

brynn · January 6, 2004, 1:43am

Hi WholeBon,

I'm sorry for the delay in replying, this time. Usually I'm not "away" so long. I had a medical procedure on the 30th, and I'm just kind of catching up. It was something I haven't had before, for some of my pain--chronic pelvic pain, it's called. If I can find rides (as it involves sedation), I'll be having it monthly for awhile. This time, I only had 4 days relief, but each time I have it, I'll get longer and longer relief. Until eventually, I won't need it anymore. It only affects part of my pain, as my body has just forgotten how to relieve it's own normal pain, of any and all kinds. But the more I help it to remember, the more it will remember on its own.

Well I am also very glad you found this website and message boards. You spoke about asking for and receiving help and support, as well as giving help and support to others. And that's what I find to be the beauty and magic of message boards--or the potential anyway, as I guess some at other websites are poorly run. But here, anyway, I just think it's magically beautiful the way, when someone posts a message asking for support, they are at the same time helping others, who may be having the same problem, but are only reading, maybe too sick to post messages, or too shy, etc. Or sometimes someone will post a message about something that someone else doesn't have the courage to "talk" about, and they can be supported without having to. And of course, obviously when someone replies to a message, they help others.

I also have struggled with isolation. And while I am more physically isolated than I have ever been, I am happier than I've been in years, because this cycle of asking and giving that I've found in certain message boards and websites. You know, I can come here when I'm feeling well enough, and participate to whatever level I choose, without hurting feelings, or disappointing others, and also without inconveniencing others. Of course, there is a certain glass ceiling effect, because emotions can only be expressed to a certain point by typing and writing and reading. We miss so much without vocal inflections, tone, body language, touch. So it's not exactly like real life. But I don't have the energy to handle real life anyway. So it's just working out really well, for me.

Oh, yes, I know what you mean about the vicious cycle of low self-esteem and living in a private h***. I can't say whether I've worked through it, or whether I've just been more successful than usual, lately, at denial!! lol!!

WholeBon · January 6, 2004, 4:42pm

Dear Brynn,
Please never worry about not responding immediately as all of us here are in the same boat regarding coping with unpredictability of symptoms,etc. due to on-going health challenges. I am just so happy to hear from you at all (just goes to show how bad quality of life has been for me for so long now). Don't mean to complain or dwell in self-pity as I am just being honest as to how low I've sunk. Kind of like I have been living like this for so long, I am needing to just talk about what I've been experiencing, and needing a witness, someone to know I have been going through. I think isolation has made me feel invisible and giving words to this makes it more real, makes me more real, alive, and more present. I am so glad procedure is helping you and giving you hope. I think you are amazing to be doing as much as you are, while in constant pain. I know how debilitating chronic pain can be, and thank you for affirming my"mighty spirit".

brynn · November 11, 2004, 12:12am

bump

Brynn

Moderator for Chronic Pain forums and

Chronic Fatigue Syndrome forums