not letting up

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sognatore1228
New Member


Date Joined Feb 2004
Total Posts : 2
   Posted 2/28/2004 8:02 PM (GMT -7)   
I was just recently diagnosed with CFS in September. It just doesn't feel like it is letting up at all. Everything in my life just feels like it is slipping between my fingers. I have no control anymore and I don't have any strength or will anymore. How do you deal with this? It is affecting my relationships with friends and family. I would just like someone to talk to about this.

Post Edited By Moderator (brynn) : 4/22/2005 3:47:56 PM (GMT-6)


ChazMc
Regular Member


Date Joined Feb 2004
Total Posts : 68
   Posted 2/28/2004 10:14 PM (GMT -7)   
I've had CFS since 1986 and coping is the real issue. The first round lasted about 6 years and then I have had recurring off nad on- usually when I get really sick with something like the flu. I have had a number of heartattacks in the last year and the CFS has come roaring back. I find it helps to find others with the disease. I have learned to deal with this by accepting what I can't do and trying to stay focused on the things I can do. And, yep there are days I can't do anything and days I just jhave to push myself a little bit although with heart disease now pushing is not often the option. I imagine being bipolar adds to the problems for you as welll. You'll be in my prayers and wopuld be glad to chat about this if you have mroe questions or responses.
Chaz


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 2/29/2004 3:38 PM (GMT -7)   
Welcome Chaz and sognatore!

Sognatore, I'm sorry to hear that you've been diagnosed with CFS.  Have you had a chance to read or learn more about it yet?  That is usually the first step in getting a handle on your symptoms.  Yes, it should be your Dr's job, but most Drs do not know much about it, or how to treat it.  The CFS Resource Center, here at HealingWell (that is a link) will have lots of info, and might be a good place to get started.  Then, once you understand more about it, you can identify your symptoms.  And once you have done that, you can set out to find ways to treat them.

I think I can speak for everyone with CFS, that we all know what it feels like to have lost control over our own lives.  This is probably the greatest challenge any of us have ever faced.  But most people I've known, in 20 years of having CFS, do find ways to face the challenge.  And I believe you will too.  You've already found the courage to post a message on the internet, asking for help.  And I think you'll find ways to cope with all your symptoms, too.

The loss of friends and family to this illness, I think, is the saddest and most difficult issue to deal with.  But what I have to tell myself, if that what I've lost, is the relationships as ithey used to be.  I think some friends and family will recognize this also, and be willing to work on the relationship, and to accept your illness.  Others will not be willing to work on it, and personally, I have realized that it if they are unwilling to grow with the relationship, they probably would not have been a lasting friend, anyway.  So in that way, and that way only, I see CFS as a blessing.  It's not something I would have chosen, but it has served to tell me exactly who are my true friends and family.

So anyway, let us know what we can do to help you learn to cope with this illness, and all it brings.  Also, the more you can learn about the illness itself, the more you will be able to help yourself.  Don't forget the link I posted above.  Take good care.

brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums


Cathy1000
New Member


Date Joined Aug 2004
Total Posts : 3
   Posted 8/14/2004 2:59 PM (GMT -7)   
Hey!

I developed CFS in 1999. After about 2 years of feeling like nothing was ever going to get better, I did slowly start feeling better. I'd say I'm still not TOTALLY better but I am getting there - just know that it isn't nessecerally forever! Hope that helps! :)

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 8/16/2004 7:30 PM (GMT -7)   
Hi Cathy,
Welcome to HealingWell and the CFS message board! Thanks for taking the time to share your encouragement. It's always nice to hear about the power of the positive attitude! I think you're right, that over time, we can expect to improve slowly and gradually. And if we can learn some effective coping skills, I believe we can actually experience a large improvement in functional abilities. I've never heard of anyone recovering 100%, but I do think a high percent is possible.

And not to imply that it's easy; it's probably one of the most difficult things with which most people are ever faced. But with good support, we do survive, and that's what we're here for! So please feel free to drop by when you're "in the neighborhood", or just any time you need support, or have support to offer.

Good to meet you Cathy!
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


Janice33
New Member


Date Joined Dec 2004
Total Posts : 9
   Posted 12/7/2004 9:45 PM (GMT -7)   
hi, wow, what I'm learning as I go through these posts. I surely am not alone in m y feeling of "life slipping through my fingers" with this ambiguious "disease" that isn't defined enough or identifable enough to make me sure I have it. I've lived a very independent and reasonable successful life and this is a wow. I never ever though I'd not work. I still do some, but it's minor and very diffic ult. I just don't want to giv e up. Also, I am trying now to write which I never had time before. I'm far from afflulent so money is an issue too.
God knows, this will make me a saint or kill me.
I guess I don't like whining and I hear that in myh own head as I think about how I feel. Not sick enouogh to be in a hospital, but too darn tired or whatever to go shop for groceries or clean house or get supper done in time. I guess what I'm suffering from more than anything else is guilt and disapproval over being sick in this odd way.
Peace. Janice33, but I often feel more like Janice l33

prepackey
Regular Member


Date Joined Oct 2004
Total Posts : 183
   Posted 12/11/2004 3:46 PM (GMT -7)   
welcome to the new pepole,i've been having a real hard time latley with my pain been layed up in bed so kind-of nice to be sitting up i told brynn that in was going to e-manule well they wont take insurance so looking back in to ore health and sceince the pain was so great i just wanted to die. but once again crawling out of just to get connected again with pepole dont have much engery at all i'am getting tied of doing this and the pain hasnt left completly still in my back so i had better go good luck to you all and welcome puppylove i sure do like that name. love prepacky
Hello, i'am relearing how to use this wed. sight my husband swich us over to msn. my pain is low right now, hopefully it stay's that way. still trying to get rested up from our trip,how is julie and annie? i'am glad today is sunday its my lazy day. i'am still having a hard time with taking a pain pill as soon as the pain starts ive got 13 yrs of recovery, so my brain says do we really need a pill yet, my addiction is saying yes and i'am holding off on taking, but sometimes i wait to long, then i cant get the pain out! so i'am chaning my ways i have to take it as soon as the pain starts to hit like right now. so took 2 hydro. pain pill's and hopefully that will be all i take today my new e mail address is rbdale55@msn.com and mabey some of you will send your e-mail if you like.i guess i had better tell you who i is prepackey, thankyou and hope you all have a great day.


prepackey
Regular Member


Date Joined Oct 2004
Total Posts : 183
   Posted 12/14/2004 12:19 AM (GMT -7)   
hi jance33 and kathy, i could'nt get to sleep so got up and was checking out the sights brynn would you happen to know of any place like hospitals that would take me for studies or any thing like that, i'am low income and cant get any one around here to take me, but still looking, their has to be something out their for me. i'am just running out of places and getting very disappointed so if you know of something please let me know. welcome to the new pepole! gotta try to get some sleep night.
Hello, i'am relearing how to use this wed. sight my husband swich us over to msn. my pain is low right now, hopefully it stay's that way. still trying to get rested up from our trip,how is julie and annie? i'am glad today is sunday its my lazy day. i'am still having a hard time with taking a pain pill as soon as the pain starts ive got 13 yrs of recovery, so my brain says do we really need a pill yet, my addiction is saying yes and i'am holding off on taking, but sometimes i wait to long, then i cant get the pain out! so i'am chaning my ways i have to take it as soon as the pain starts to hit like right now. so took 2 hydro. pain pill's and hopefully that will be all i take today my new e mail address is rbdale55@msn.com and mabey some of you will send your e-mail if you like.i guess i had better tell you who i is prepackey, thankyou and hope you all have a great day.


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 1/3/2005 8:29 PM (GMT -7)   
Hi Janice,
Welcome to HealingWell and the CFS message board!
This board is slow, but it has become a wealth of info for new members! I'm glad you have found some support.

I know this is a horrible, humiliating, disabling illness. And it's hard to find some acceptable day-to-day existance. But just hang in there. Don't stop looking for help, and you will eventually find what you need to get through. What little helpful research there is, shows a very slow, gradual improvement over several years, and eventually a plateau where one can meet basic life resposibilities, but not much more, certainly not employment. At least that's what I read the most.

But please feel free to reply with specific problems or questions. HealingWell is set up to handle ongoing discussions, that's why we're here. So please don't hesitate if that's what would be helpful for you.

I'm sorry it took me so long to reply to your message. My computer crashed and it took me a month to get it fixed. But I'm back, and should be for the long term, now.

Prepacky, I'm sorry it didn't work out at the other hospital. But I replied to you on the chronic pain board, and we can just continue there.

Take care, everyone :-)
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums


lifesaver247
New Member


Date Joined Mar 2005
Total Posts : 7
   Posted 3/8/2005 9:36 AM (GMT -7)   
 

Post Edited By Moderator (Admin) : 3/9/2005 9:30:26 AM (GMT-7)


Admin
Forum Administrator


Date Joined Jan 2003
Total Posts : 9658
   Posted 3/9/2005 9:30 AM (GMT -7)   
lifesaver247,
Soliciting in the forums is not permitted.  See the forum rules at http://www.healingwell.com/community/guidelines.aspx

Peter Waite, Founder/Editor
HealingWell.com - Community, Information, Resources
 


linc
Regular Member


Date Joined Mar 2005
Total Posts : 47
   Posted 3/20/2005 2:07 PM (GMT -7)   
Hello Sognotore1228 & everyone.

I know it shows me here as a new person, but I'm just getting back here after a long while of being away.
I couldn't remember what email address or username I'd had & an starting over.
My name is linda carlson and I highly recommend the CFS Resource Center here at Healingwell. There is such alot of helpful
information there. And if you do go, you may benefit in searching out the support groups available on their lists as well.

Learning from others is key. I've had this darned illness for 27 years, and subsequent health problems to have to learn to cope with
on a daily basis. It is not an easy thing to do, and oftentimes... just being able to have a solid group to come to and get a little extra
encouragement helps us get through the day.

Try to make yourself look into the helps available to you out there. There are many.
I'm sorry that you are struggling right now. We have all been there & we surely do empathize with what you're feeling about now.
Losing friends, family who doesn't fully understand... or maybe even try to understand, or who doesn't believe we're as sick as we are,
It can really take it's toll on us.

We certainly wish you the best. And hope you'll come again anytime you are having a particularly rough day.
sincerely,
linc
Courage is not having the strength to go on ... it is going on, when you no longer have the strength. - source unknown -
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rik
New Member


Date Joined Mar 2005
Total Posts : 2
   Posted 3/26/2005 11:30 AM (GMT -7)   
I was just recently diagnosed with CFS in September. It just doesn't feel like it is letting up at all. Everything in my life just feels like it is slipping between my fingers. I have no control anymore and I don't have any strength or will anymore. How do you deal with this? It is affecting my relationships with friends and family. I would just like someone to talk to about this.


hi, i have suffered with cfs for around 5 years and understand your depression with it all.
you can get in contact with me by clicking this rikismyname@aol.com if you want to talk. im 22 , male, cambridgeshire
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