Being Positive With This DD

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Sep 4, 2010.

  1. greatgran

    greatgran Member

    Why is it so hard to stay positive with this darn cfs/fm autonomic nervous disorder, etc..?

    I try and try but seems the negative over rides the positive..Am I alone with this feeling?

    Get hopes up but seems nothing works.. Oh, well going to try to count my blessings..

    God Bless,
  2. LindaJones

    LindaJones New Member

    What helps me is having the support of a medical professional who is educated about CFS.
  3. kat0465

    kat0465 New Member

    don't know what to say either, except i feel the same way. More and more i find myself bedridden. and that leaves me lots of time to think:(

    I feel im quickly going downhill, and don't know where to turn. My cfids doc is good but her aids patients take up most of her time, so we kinda just slip thru the cracks. don't want to scare my kids so i dont tell them much, and the husband dosent want to hear about it at all.

    i am schedueled for an echo next week and im terrified they will find something they can't fix.
    i was so excited with all the talk about the xmrv thing, and i guess im wanting to be fixxed NOW, i feel i can't wait much longer or will be past the point of no return.

    we all just need some hope, and understanding from our Friends and family, sadly for most thats sorely lacking!

    No wonder we feel like we do, i too am trying to count my blessings gran. I think it's what keeps us sane.

    Ur not alone, and you know you can e-mail me any time:) ( finally got the Puter back) i was out of the loop for almost a month.
    Hang in there, and keep on counting.
    {{Hugs}} Kat
  4. barb62

    barb62 New Member

    I have been in so much pain lately I just feel at my wits end. I too am getting worse every day and am so tired of fighting. I have understanding people around me , thank the Lord. I am also so grateful for this site. It helps so much to be in touch with other people who understand. I got tested for the XMRV virus, but have received no results yet. But even with this knowledge of whether I am positive or not, is just that--knowing. No cure, just knowledge. Sorry I am so negative today, but that is just the way it is. God Bless you too, hopefully tomorrow will be better. Barb
  5. Denamay

    Denamay New Member

    I have much to be thankful for, but there are days that I can't remember what they are.

    I have had a great year of travel and visiting, my health held up for most of it, but today is another story.

    Now that things have settled down and winter is coming on I feel very depressed and sorry for myself.

    Not that I have any real reason to feel this way but I can't seem to shake it.

    I have friends and a good family so what more do I want?

    I am having a major fibro flare and am having some kind of anxiety attack, anyway it's no fun.

    Gratgran, I have read many of your posts and you are mostly positive and helpful so thank you. from another greatgran, Denamay
  6. barb62

    barb62 New Member

    I think I may have a suggestion for you regarding your grown children not understanding what you are going through. Mine were much the same until I had them read the posts on *ways to explain fibromyalgia and CfS*, The one titled "my name is fibromyalgia" seemed to hit home the most for me. Hope this helps. Barb
  7. heapsreal

    heapsreal New Member

    cfs also effects so many systems of our biology that it can cause depression, ie a biological cause eg hormones and one i find agggravating is lack of good quality sleep, treating sleep can improve mood considerably and alot of us find that we are sensitive to antidepressants especially ssri's and nsri's, some can handle very small doses. i have found taking 200mg 5htp every morning makes my mood more robust and worries tend to be more like water off a ducks back. the illness, cfs can cause situational depression as sometimes u cant see a light at the end of the tunnel and it impacts our ability to socialise and we lose alot of friends because they dont understand the illness and our ability to plan for the future is very hard.

    but in sayinng all this, i think cfs being recognised as a real illness is coming to a head with all the studies on retroviral causes panning out in our favour, so there is definately hope for us, but like everything it just doesnt happen quick enough.

  8. hermitlady

    hermitlady Member

    These personalities visit me quite often, it's so hard to live w these dds without getting discouraged and sad.

    I've been trying really hard lately to squash my negative thoughts before I work myself into the pit of depression. It's very hard tho. I've been on Prozac for years, and have always had the diag of depression along w the FM/CFS. What a great package deal, HUH??

    The site, has a good section where you can read thru a workshop on cognitive therapy. It helps you identify your distorted thoughts and stop them in their tracks. I've tried these techniques over the years and I admit, sometimes I just give in and forget about the fight. You have to be very diligent and aware of your thought processes all of the time. It's not easy, but I'm trying harder lately.

    I have that horrible feeling of being so overwhelmed (w housework, kid stuff, wifely duties). I hate the feeling of always being so overloaded w things to do and never seeming to make a dent.

    I have yet to figure out how to deal w this without getting frustrated and angry w myself and family. I also hold a lot of resentment inside due to problems w my kids and dh. Long story.

    I don't get much help w anything and we can't afford a housecleaner anymore. It's funny how everyone makes messes, dirties clothes, etc, but I'm the only one who cleans it all up. My house is almost always a mess, it's embarassing but I just can't keep up. Due to my kids' problems, they are not much help at all even tho they are teenagers now.

    A good pity party is necessary sometimes, but I'm trying not to go there everyday. They say to find something that you're interested in (what's that?) or that makes you happy and do it. A hobby or whatever. My problem is I can't think of anything I have the energy or mental capacity for! I'm sure you can relate.

    I always say, nobody told me my life was going to be like this. I want a do over! I Just have to take it hour by hour most of the time, cuz I never know how I'll be feeling pain, energy or mood-wise. Makes it kind of hard to plan much of anything to look forward to. Waking up w the feeling of dread is so awful...I'm trying to figure out how to avoid that.

    This site is so helpful, knowing we all understand each other is worth so much. It's just too bad that we don't have more action here, sometimes lately it seems that hardly anyone posts anymore. I know many posters have been scared off by the fights etc, and that's really a shame.

    Anyway, sorry for the ramble, thanks for reading.

    Love to all...Hermit
  9. MsE

    MsE New Member

    Because it messes with our brains. Because it hurts. Because we get negative feedback from the medical community, our friends, and sometimes our families. Because we don't get enough sleep. Because people who don't understand expect us to do our part anyway. Because so many of the medicines that are supposed to help, have miserable side effects, so some of us can't use them. Because it's often hard to think straight. Because we can be feeling almost human one minute, and someone rips out our batteries. Because it's hard to stay focused--even to read.
    Of course we get negative. This stuff is the challenge of a lifetime! We have to work at being positive, work at finding beauty in the world, work and feeling self-worth. That's why. MsE
  10. hermitlady

    hermitlady Member

    Ms. E...Your post covers it all. Sad, but true. And some people just have no idea that this is what we live with.

    gb66...I'm going thru the premenopause crazies right now, irregular cycles etc, I'm 49. I'm sure my hormones are causing some of this nonsense. I had an appt for a GYN appt that I've had to reschedule 3 times so far. I am notorious for rescheduling appts. It's such a chore to get ready, get there and everything else involved!