After 5 years still can't deal with the lows

Discussion in 'Fibromyalgia Main Forum' started by bunnyfluff, Jan 30, 2007.

  1. bunnyfluff

    bunnyfluff Member

    FMS/CFS has taken so much from all of us, I know. And on my good days, I am okay. During remissions, I am giddy with the hope I have beaten this thing. Then, when I am so sick again, it just feels so hopeless.

    At the low points I question everything- my marriage, my job, my ability to continue to parent, my financial future, if I need to buy any item of clothing other than a new pair of PJ's. The list goes on.

    I try to thank God every day for all that I DO have, for those blessings are many, of course, if you count them, and I try to thank Him for working on the solution to my health problems, but this road has been a long one so far, a path filled with lots of stumbling steps.

    I try to take each day as it comes, but with this knowledge that I am really sick, this time my EBV reactivation has lasted for months, I'm not sure what to do to tell myself that it will be okay.

    I don't feel okay. Not at all.

    Yours in Health,
  2. BluEyes

    BluEyes New Member

    OK - I know I should know this abbreviation... but my mind won't let me remember... soooooooo

    What does EBV mean??

  3. jackrorabbit

    jackrorabbit New Member

    I have FM and I am a 37 yr old male. The stigmata for me is horrid. My wife and I are selling our house and downsizing. I cant get out of bed some days. So I cope by chatting on the message board and listen or watch something funny. I know it sounds trite, but laughter is a very good medicine. It releases endorphines into your system, which can help with the pain. I know a little about EBV, and I know you hurt with every move. So...
    A baby polar bear asks his mother, "Am I 100% polar bear mommy?"
    "Of course you are." she replies
    "Are you sure Im not part black bear?"
    "No baby your 100% polar bear."
    "I know, Im part panda bear."
    "No baby, your 100% polar bear."
    "Oh, I must be part koala bear."
    "No baby... why are you asking if your anything other than 100% polar bear?"
    "Cause momma.... I'M COLD"

  4. bunnyfluff

    bunnyfluff Member

    Thanks for the laugh!

    I know what you mean about needing a laugh. I love the movies "Dodgeball" and "Zoolander". Ricky Bobby cracks me up, too.

    We downsized right before 9-11, and it was a great move, it was just before I was Dx, and couldn't work for quite awhile. The smaller place is much easier to manage all the way around.

    And I'll take up that soup offer, too. ;-*
  5. Zzzsharn

    Zzzsharn New Member

    It's hard to have blind faith, and there are days... filled with pain, that seem to go on endlessly.

    I imagine we all wonder "why"- I know I do. And I get tired of telling myself "this too shall pass."

    It sucks, and it's okay to say so.

    Remember you are not alone.

  6. pw7575

    pw7575 New Member

    Hi Bunny!

    You sound like me. I too have been sick for 5 years and still find it hard to get through the lows. I also pray every night and give thanks for the good things in my life etc. And on my good days (not too many in the last 5 months) I am can get through ok. But the bad days and this long streak of bad MONTHS and huge lows the last 5 months just has been hard.

    You would think that after 5 years we would find a way to deal with these illnesses but that is not the case. I guess we can't put that kind of pressure on ourselves. We can't expect to always be ok and positive when we are dealing with something like this. It just isn't realistic to expect that of ourselves.

    I think the best thing we can do is to say that it is ok to feel low at times. Give yourself permission to be upset that this is happening. Sometimes we just need to do that and let it all out. That in itself can make us feel better.

    I think you need to just vent and let it all out and then watch your funny movies like zoolander and dodgeball :) He was right about laughter. Talking on this board helps alot too.

    Just know that you will get through this and you are certainly not alone so lean on us whenever you need to.

    Hope you are feeling better soon!
  7. xchocoholic

    xchocoholic New Member

    I am sorry to hear that you are having a tough time. A chronic illness is very hard to cope with.

    I noticed you are on the gluten free diet and if you don't mind me asking, are you completely gluten free ? Is your house gluten free ? Radical, I know, but maybe it's what we need ...

    I've met others, but not all, on the celiac board who were diagnosed with CFS and now are better. Many have eliminated other foods too. Even groups of foods ...

    The reason I ask is that I just discovered how sensitive I am to gluten and am wondering if others here are too. I started a thread today asking this and if others here with celiac still have abnormal viral titers.

    I've only been on the diet 16 months, but I'm hoping going 100% GF will resolve the symptoms that are hanging on.

    Hope you feel better .... xchoc
  8. JonAnne

    JonAnne New Member

    Every time I crash, it just takes me aback and I get SO SO SO depressed- like the burgalar has come back to the house, or the rapist has come back to attack me again. (That feeling, I mean). It's good to have people around you then that will just hug and soothe and say, " We'll get through this too, babe, no matter how long it lasts." I don't think any of us ever say, " OH, ANOTHER CRASH???OK< BRING IT ON!!!". It does have a very overwhelming box of emotions that go with it. It's normal. Anne
  9. bunnyfluff

    bunnyfluff Member

    I was completely gluten free for 4 years. I prepared everything from scratch at home. I have started to eat out some, and I am sure I do get cross-contaminated. There are just no 2 ways around that. I am so sensitive to gluten that walking thru a very large bakery dept will make me depressed and feel ill.

    I felt like changing my diet would make me "all better", and it does improve symptoms, don't get me wrong, but it does not provide a cure.

    I also found that I have an issue with nickle (like with earrings), but also foods, lettuce being one, but there are many others, and I get migraines. Soy is also a problem, not sure why, but it has some nickel, too.

    Anne, you describe it well, it feels like a rapist has returned to take a little more. I have had EBV active 3x in the last year. Actually this last 2x I don't really feel like it was much of a break in between.

    I don't mean to whine, but I am glad to have a place to go to write how I feel, and someone can understand how this feels. I am scared this time. I am scared that I pushed too hard, and I can't come back.

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