The Ups and the Downs of this disease are driving me crazy

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Mar 2, 2009.

  1. TeaBisqit

    TeaBisqit Member

    Last week, I was so sick, I was convinced I was going to die. My thyroid was acting up. I had every symptom of untreated Hashimotos. Well, all of a sudden, today, it's better. I just don't get the weirdness of how we can go from feeling like we're near death to all of a sudden it's not so bad.

    I am just so depressed because every time I think I'm better, it goes back to near death and any hope of ever working goes out the window. It's one of the cruelest diseases. On days I'm a little better, I'll start to think I might be able to do something with my life. And then the next day, I'll be so sick, I won't be able to move. It's cruel.
  2. wendysj

    wendysj New Member

    Hi TeaBisqit,

    I know what you mean. I have been leaning heavily on the wonderful people here on the message board lately because of similair feelings. It's so hard not to get down when you start to feel it coming back on after a good period of time.

    I think we all have to be careful not to get stuck in the moment - good or bad moment. I mean, when it's awful we have to remember it will get better and when it's pretty good we have to remember it will get bad again. It's really hard to do... especially when it's been bad for so many days that we can't remember the last good day.

    We're here for you and we understand.

  3. nixon

    nixon New Member

    Although I haven't had any "ups" in quite awhile! I've been in a terrible flare for the past month or so.....

    I don't think any of us really grt the WEIRDNESS of these DDs.

    Hang in there & try to stay strong( I know it can be quite trying sometimes!!) Take Care.....
  4. emmally

    emmally New Member

    I cant even stand how sometime I will wake up feeling not so bad and think "ok, this day is going to be allright" and by the time I finish my breakfast I feel like I am going to die....It just doesnt make can there be all these sick sick people and no cure...not even a freaking good treatment...............
  5. vivian53

    vivian53 Member

    Hi TeaBisqit. I just want you to know that you are not alone. Most of us feel this way. It is such a baffling disease with it's swinging up and then crashing down. I am considering this lucky for me though because I used to be like Nixon and many others, and stayed in a constant bad place. I take every semi-sick day as a good one. I also try not to think of my life as a pitiful shell of normal. It's hard, and you're right, seems cruel.

  6. greatgran

    greatgran Member

    Oh, how I can relate to every word you said.. I just don't get these ups and downs, I have more downs than ups but the not knowing from one day to the next, one minute to the next how we will feel is enought to get depressed over.. I also suffer with anxiety/depression since this darn dd.

    It is so cruel, yesterday I just felt like I couldn't move the aches, fatigue etc. today I don't feel as bad physically but mentally I am all to h---. My head feels so weird, I feel like I could scream, cry and don't have a clue why, except I have so much I need to do and just can't start even trying. I pace from the bed to recliner, from the computer to the tv.

    To think I may live this way the rest of my life, just makes things worse..

  7. shari1677

    shari1677 New Member

    OMG a few weeks ago, I felt fantastic. I had so much energy, I was out running around every night, my house was clean, my teenage daughter had good meals on the table. I even went so far as to tell my friends and family I thought I was in remission, I must be doing something right.

    A week later - I'm sitting here at noon still in my PJs. I've been in and out of bed all morning, too tired to do anything but walk from the couch to the bed.

    This isn't the first time I've had a brief remission.

    I hate to say this, but it's almost like that phrase "it's better to have loved and lost, than never to have loved at all" our case "It's better to have had your health and lost it, than never to have had it at all" -DISAGREE COMPLETELY!! I wish I didn't remember what life was like before this disease, how active I was, my house was clean, I was a bonafide supermom.

  8. TeaBisqit

    TeaBisqit Member

    Sometimes, I can be so deathly ill in the mornings and then suddenly, in the afternoon it's better. Then there are times where it's not better till at night. Then I get times where I'm better that morning, but come afternoon, I am dead. None of it makes sense. I can even get an hour where I'm better, and then the next hour I'm ready for the undertaker. It's just awful. I never know how I'm going to be. Can't make plans because of it. There is no life from it. It's just an awful yoyo.
  9. jasminetee

    jasminetee Member

    this yo-yo symptom thing drives me crazy too. I hate it. It also makes us look unbelievable to others. It makes it impossible to make any plans.

    I hate feeling so awful and worse all the time on top of it. I hate hate hate CFIDS and FMS!

    Venting here helps me emotionally at least.

  10. kat0465

    kat0465 New Member

    for sure, one min your up then WHAM! it knocks you on your A@@. the bad part is when were feeling kinda normal, we tend to over do it and then were in really bad trouble... again. Sat i was feeling ok, not great but i had some energy, so i went next door to our old property, we have a large storage building that need cleaning out, well, i spent about 3 hours going back & forth boxing up stuff & throwing the rest away. and omg, that evening i was sick, sick, sick,! and Now monday afternoon, im still sick,sick,sick. cant do anything but lay on the couch. aches, sore throat, low grade fevers, heart palps. u name it i got it.

    I just wan't to do everyday normal things, and cant even do that!! how does everyone deal with the frustration??
    when im in a real bad flare, i tend to hover on here,or go to some other sites for uplifting, and of course i Pray. but god it just gets soo dang old to go thru this all the time!!

    And yes Tee, it does make us seem like were not believeable, My husband has even questioned why i can do somethings some times & then im down for who knows how long. Although this man has never had the flu till this winter (he's 45) i told him you know how you felt when you were just getting the flu? well thats how we feel ALL the time.

    he still dosent get it tho :(
  11. TeaBisqit

    TeaBisqit Member

    It is one hundred percent damaging to our credibility. No one understands that just because I might be able to cook something one night doesn't mean I can do it every night. In fact, the night I cook, I'm usually trying very hard not to collapse into the stove. And by the time I have to wash the dishes, I'm nearly falling over.

    I used to have a big problem with my mother over this. She never did understand that a tiny bit of energy one time doesn't mean better or fine. It just means I could do it that one time.

    I had the same problem with my relatives. They only saw me for a few hours. And just because I didn't happen to collapse on the floor, they deemed me healthy and faking it. When in truth, I was so dizzy when we were out that I was trying very hard not to fall over. And then I was down and in severe pain for three weeks after they left. But they didn't see that part. They only saw me able to be out with them for a day.

    We're always judged on how we look or act. And I keep telling people that just because I'm not screaming doesn't mean I'm not in severe pain. I just happen to not be a screamer. You can't tell by looking at someone how much energy that person has or if they are hurting all over.
  12. rickj44

    rickj44 Member

    Two people walk into a Birthday Party. One person had Fibro. the other person has a neck cast and both arms broken.
    Who gets more Attention.. Fibro is on the inside.. its invisible ..Its gives you enough strength to make you look as nothing is wrong.

    But for the people that know you, live with you and still question what you can and cannot do, there is no excuse.
    Most Healthy family member's are only concerned and have some idea when they get the flue.. BUT.. once there better oh how they forget.

    I have a health nut sister that tells me to exercise and my legs will get stronger..well i try and explain that is not that way it works, and do you really think i really like sitting around do nothing..

    I am so sick of it.. and so sick of healthy people, telling me what to do, when i have had 13 yrs experience with this illness and they have had zero.

  13. TeaBisqit

    TeaBisqit Member

    If one more person tells me to exercise, I am going to exercise by blowing up the world :D

    I was an exercisaholic before I got sick. I belonged to a gym. I worked out two and a half hours every day and then I would come home and do more. I loved it. It was a huge part of my life. Everyone seems to have forgotten that. They act like one day I just decided to be a vegetable. People are just stupid. Obviously, if we could do it, we would be doing it.