How to deal

Discussion in 'Fibromyalgia Main Forum' started by SHYGIRLELM, Dec 14, 2006.

  1. SHYGIRLELM

    SHYGIRLELM New Member

    hey there i would like to know how everyone deals with this
    disease i really don't think i can take much more.......
  2. Scapper

    Scapper New Member

    I wish I had a magic answer for that one. I didn't want you to think no one was responding (or caring).

    I guess I get through each day always with the hope that the following day will be better.

    Then........when it's not........I pray for the NEXT day to be better.

    In the meantime, I try to get some sort of enjoyment......however small it may be out of the moment.

    Do you have CFS? Do you have FMS?

    It may help others with answering if we could know a little more about you :)

    Welcome to the board and I pray you find some solutions here.....there is A LOT of useful information and extremely nice people here to help :)

    scapper
  3. krchamp

    krchamp New Member

    I really don't have an answer either. I just do what I can and try to live day to day. I really don't make too many plans in advance because I don't know what my days are gonna be like. I rest when I need and take my meds. I learn to say no which was a big help. I don't over exert myself. Those are some of the thing that have helped me. This board helps. It is unfortunate but comforting to know that there are others and I am not alone. Welcome...

    Kristi
  4. Shannonsparkles

    Shannonsparkles New Member

    We're happy to have you here on the message board!

    Have you been sick a long time? Or are you new to the diagnosis?

    I got sick gradually through my childhood. I creeped through high school (this is where my best memories are - kids around me and stuff to do!) and kept on getting sicker after graduation. I've never been well enough to work or drive or live on my own. I'm housebound and need to lie down most of the day.

    In 2002, I got my diagnosis after becomming completely bedridden. We didn't have health insurance, so it took that much to get me to a doctor. The doctor told me that I would be well in three years at the most. That was very good news. He made it seem like it was no big deal.

    Dad started taking me to clinics, alternative treatment stuff. He was sure he could find something that would help me. He hates to see me suffering like this.

    In 2004 I saw a herbalist who was supposed to be something of an expert on treating CFS. He wrote a book about it, in fact, and Dad was pretty hyped about meeting him. The herbalist told me that I only had candida. That was my whole problem and nothing else, he told me, and when that was gone, I'd be cured. That made me happy. So I went through months treating candida.

    When I saw the herbalist next, he was embarrassed. I didn't have candida anymore, but I wasn't well. He said quietly, "You have CFS after all. See you in several months." He looked away from me and down at the floor when he said it, and mumbled. The way he said it had me worried. It sounded like a death sentence. I decided not to see him anymore.

    That's when I started researching on my own. 'Is CFS really so bad?' I wanted to know. All the docs and alternative practitioners I had seen over the years had told me that I'd be well it in a matter of months with treatment. Then I saw the statistics: 30% of CFS patients get worse, 30% stay about the same, 30% get a bit better but don't get healthy as they were before. Some people had relapses even if they got bette. This was the first time in this whole experience that someone had told me I might not get better. In fact, if I believed the statistics, I had only a 30% chance of getting a little better. (I don't put a lot of stock in statistics any more, but it was a terrible shock at the time.)

    I needed to know more. I wrote my first posts here August 2005 asking, 'Is it true? Do some people really not get better from this?' I was gulping tears as I read the replies. It was true. Some people don't get better. And with my medical history, I was likely to be one of them. This couldn't be real. Why didn't anyone tell me before?

    I kept comming to the message boards. At the time, I thought I could learn my way out of this disease. If I only knew enough, I figured I could save myself somehow. Some of the things I learned here ded help me. It made me feel less helpless knowing more about my disease.

    What helped me most here was seeing that other people had the symptoms that I thought only belonged to me. I wasn't making it up! I wasn't alone. And they were all really nice people, caring people, comming here to help eachother. I started to feel better about myself. I'd been so isolated all the years, and now I had this great extended family. It was wonderful to be here.

    Dad keeps on believing that I will get well. I think he's a bit nuts about that. He's been good about findng medical care for me, and some of it has helped me for awhile. He does the chores at home and he is my provider. Sometimes I tell him that I'll always be disabled, that I may never be able to work and he may have to take care of me for the rest of his life. I want him to be prepared. He doesn't believe it though. I hope that he's right. If there is a way to make me feel better, he'll find it.

    I feel like I need to accept myself as I am, disease and all, in order to feel some contentment. Trying to get well has totally drained me emotionally over the years, so I think the fight has gone out of me. I think that I will get older and older and not be healthier than I am now. I have a wait-and-see attitude toward the treatments I am trying, and I don't get my hopes up any more. I just try to live as best I can each day with what I have.

    What's your story? What are your symptoms like and what is stressing you lately? I hope you will like this website.

    ((welcome)) Shannon

  5. Shannonsparkles

    Shannonsparkles New Member

    Do keep trying to find something that will help. It's hit and miss as to what will work, but it's all miss if you stop looking. Even if you do try everything you can find, it can still be all miss, but at least you know you gave it what you had.

    I've had a little bit of better times the last couple of months in some ways from this treatment I'm doing. I didn't go in hoping. In fact, I didn't think about it at all because I'm already worn out from thinking about the DD (darned disease). I just keep trying for its own sake. What happens happens. :) I might get lucky

    People do get better. And they do find things that help. For sure you will get some symptom improvement in some areas, at the very least. I hope one of the doctors you see can help. It can take a lot of tries to find one who really knows his stuff, but it's sooooo worth it when you do. :)

    ((hugs & hope)) Shannon
    [This Message was Edited on 12/14/2006]