Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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ladybugdreams 09/06/2013

Hello, I have been reading on this forum for awhile so I feel as though I do know you somewhat. I finally decided to actually post since you all seem to be very reasonable people & not fanatics. Some forums are hard to get any help on because all they want to do is argue & it causes me too much stress.

I have had CFS since 2004. I had to quit my job in 2006 & am now on Social Security Didability since 2010. I have run the gambit of tests, tests & more tests finally getting a dx of FM & CFS. I see CFS as my primary illness because it is what keeps me from having my old life back, it keeps me sleeping 12 hours a day & laying on the couch the rest of the time. I do have my good days & I try to get out of the house on those days.

It seems like we all go through the mourning phase & spend our money on "the cures" for CFS, only to find they don't work. I am now at a point of just pacing myself & learning to live my life as an ill person. I am happier now that I have let go the need to cure myself so I can go back to that old life & begin living again. I now know, I am living my life now.

I am happy I found you guys & hope I can contribute to this forum. I find I can't post if I am really ill but I will post when I can. Hugs, Denise

lynx49 09/06/2013

Welcome! Glad to have you on board! Good for you for getting on disability & for accepting where you are. Awesome.

jebias2001 09/06/2013

Hi ladybudr.

I say ditto to your comments about the mourning we experience, as well as the value of letting go of a need to find a cure. You sound pretty wise to me.

I wish you a relaxing and happy weekend.

Jeb

deleted_user 09/06/2013

You sound like one smart cookie, welcome aboard!

DarlaC 09/06/2013

Welcome! You have a wonderful attitude...the right attitude to get you to where you need to be to have a rewarding life, despite CFS!!!

I think when we stop trying to find miracle cures, and accept that it is what it is with this illness, we start to focus on "the now" and find the good.

You're still you! And you sound like a very nice person.

Have a great day, and again....welcome!

ladybugdreams 09/06/2013

Thank you for the wonderful welcome. It is so nice to meet you all. I was very angry for a long time & vowed I would beat this but I kept running into a wall called CFS. Giving in was hard but necessary, like many of you I deal with depression & it was just getting worse & worse. I like my life now & just go with the flow of what the day gives me. This is a great forum. Hugs, Denise

deleted_user 09/06/2013

Denise, you hit the nail on the head exactly:
"I now know, I am living my life now".

That's it! The old me - and "that old life" - is dead. The old me and the old life died almost 15 years ago.

In her place, a new me came into being, a new life was born. I still have dreams and aspirations, but they are realistic ones. And on this journey, I've discovered talents and abilities I never even knew I had. This has been an unexpected gift.

You will do well, Denise. You can handle it.

deleted_user 09/08/2013

Your words are so well put! After mourning our old life, we need to put it behind us and focus on our new life. With my new life I have found happiness. I had to look in very different areas than I would have in my old life:) I am glad you have found this support group :) This group has been such a blessing for me!

aussiedi 09/10/2013

Hey there Denise great post . I'm new too and like you have been reading DS for ages but felt too down with cfs to talk and didnt think I had anything of value to give.However you guys are reminding me of what is important and changing my headspace into a more positive one.Thankyou and wish you well

LynnJ55 09/10/2013

Welcome, and thanks for the reminder to live in the now. Sometimes I spend too much time mourning my old active self. I have to focus on my new, slowed-down version self - the one that is more introspective and has more time to read, learn and connect with others. And on good days - I can go for a walk and not make it a competitive sport any more.

There's a great group of caring people here, I've found. Again, welcome!

pouty 09/11/2013

It is so great to see people supporting each other who have walked the same path. I am starting to accept the life of an ill person, however I still have alot of grief and frustration about what I can't do. I think I have made alot of progress in acceptance but God made me a very ambitious person (!) and this makes it harder. You are all setting a wonderful example for me. Thankyou!

deleted_user 09/13/2013

I am new to this forum as well. In reading your post it finally dawned on me that I may not ever get back to being my old self. I can see that this realization could actually help me to be more accepting, but it could also add to the depression I've started to feel. As you all know, it gets frustrating living in a world where people don't "get it" when it comes to our illness.
I am very happy to find a forum such as this since I couldn't find any local support groups to attend.

deleted_user 09/13/2013

I love seeing positive messages, (don't get me wrong venting is important too) and sometimes being positive is too hard. In reading everyone's posts it made me think of people with a disability. I've worked with students who had a range of disabilities and it's not about what they CAN'T do it's about what they CAN do. We're in the same boat.

Thanks all, I've been having a really horrible day (feeling sick, sore and sad) and all this positivity has lifted my spirits!

P.S.Ladybugdreams, I've found that when I can't get out of the house I find a new place to sit or lie (in a beanbag on the floor, or in a different room) and plug in some headphones, close my eyes and drift away. I've been listening to 'rainforest sounds' (youtube) and it seriously transports you out of yourself, it can be very restorative and refreshing.

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