Do We Ever Get Well?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by greatgran, Jan 11, 2013.

  1. TeaBisqit

    TeaBisqit Member

    Mostly bad days lately. I don't have any great advice because I just exist now. I don't live. And I've been much worse since I moved a year and a half ago. The building I live in is too hot, which triggers my POTS, and I have a smoker under my apartment, which has given me resistant sinus infections and asthma attacks. I can't move again.

    All I can say is, take each day as it comes. Some days are awful, some might be alittle better. But as far as good health, it's probably a dream.
  2. greatgran2

    greatgran2 Member

    Thanks for your reply.. I so agree.. Sent you a FB message. hugs
  3. greatgran2

    greatgran2 Member

    I so agree .. Sorry you have to feel this way..
  4. MsE

    MsE New Member

    What really bugs me is that even after all these years of dealing with this stuff, I still find myself embarrassed by my inability to keep up with the other kids--if you know what I mean. I still have to bite my tongue sometimes to keep from making excuses for walking slowly, if at all; for turning down invitations; for abrupt changes in plans; for not keeping up with correspondence and phone calls; for finding myself quitting everything. CFIDS is still an embarrassment to me.
  5. MsE

    MsE New Member

    that's where I am. I have grandchildren and great-grandchildren. Their other grandmothers are able to do active things with them, which they love. I have to be the "read/tell stories" grandma, and after so many years, that is a bore.

    Yes, I'm feeling sorry for myself today. Yes, I feel competitive and jealous. I admit it. And, I am extremely tired of having to tell my kids I don't feel up to joining them in whatever event they have in mind.

    At one point I had reached a point of contentment with the status quo, but it has disappeared. I am angry and embarrassed that my last years are having to be spent as a partial invalid. The fact that others have it much worse, and I know they do, isn't helping me a bit right now. I want to travel. I want to go dancing. I want to live the rest of my life, not just exist in it.

    I have lost the ability to look at the glass as half full and wrote this post because I need to vent a bit. Don't any of the rest of you feel embarrassed by being a "shut in" most of the time? Don't any of the rest of you feel like hiding from the world because you are not able to live life like the majority of your acquaintances? Aren't any of the rest of you sick and tired of hearing, "You look so well" when you feel so rotten? And don't any of you wonder if you aren't a mental case after all?[This Message was Edited on 01/22/2013]
  6. greatgran2

    greatgran2 Member

    Alll I can say is Amen,Amen.. I sooooooo can relate.. and feel exactly the sameway.. My greats were telling me about so and so's gran doing gymnastics...and look at me I can't even walk down steps without holding etc etc and etc... hugs
  7. MsE

    MsE New Member

    I see that I wasn't clear. By "kids" I meant my own children--the youngest in her late 40's, the oldest in her mid 50's. Those are the people I would like to be able to join more easily when they invite me to join them for trips or such. Of course I can't keep up with them in all things.

    Good for you if you still feel up to trying new stuff that comes out on the market. I hadn't heard of Anatabloc. Will have to read a bit about it, I guess.

    I won't complain/explain again. I know it can be irritating.
  8. gb66

    gb66 Active Member

    On the first three of your questions, YES. I feel like that most of the time. I know that if I feel like a mental case, it's caused by the awful suffering and isolation of these diseases, not the other way around though.

    I think having large families that we want to enjoy is what makes it even harder. I'll come back and write more later and I'm so sorry you're feeling so bad. Boy do I understand. GB66
  9. ... I have felt and thought those same things many times over the last nine years... And I'm sure many of us with CFS/ME have felt that. It CAN be embarrassing when the vast majority of us were so active and were used to doing for others before this DD turned us into invalids (or near invalids)... And we continue to see everyone around us still being active... And we feel so useless.

    And yes, I do get tired of people equating looking good with feeling good. That's one of the misleading things about this disease... We don't look sick... Not that we WANT to look sick... I sure don't... But it misleads people into thinking we must be fine, when we're not... Which then leads to them misjudging us... So unjust...

    I don't have grand kids yet, but part of me is fearful for when I do because I know how it will kill me not to do all the things I will want to do with them. I have three grown kids and one still at home. And my youngest (11 yrs old) has had a much different mom than his older siblings did because of this DD. It used to break my heart... And sometimes it still does... But on good days, I try to make the most of the time I have with him and do things with him that do not require much energy (playing board games, doing puzzles, watching favorite shows or movies together, and just talking and even laughing together).

    I still have my moments where I can get fed up with this DD and this beyond difficult situation... But I do know that my two youngest kids have more compassion because of what they've seen me go through... And I have more patience than I ever had before... So some good has actually come from this miserable disease...

    So please don't think you're complaining or irritating any of us, MsE...We can ALL relate... CFIDS/ME is a cruel disease that forces us to become spectators when we are dying to get "in the game"... So we're bound to have days here and there when our frustration comes back to the surface... But no, I don't think I'm a mental case... although I'm sure this disease could drive us mad if we let it...

    MsE, I'm sending good thoughts and lots of prayers your way... And hoping some encouragement will come your way soon... Hang in there...

    Blessings and Gentle Hugs,
    Shel

    [This Message was Edited on 01/22/2013]
  10. MsE

    MsE New Member

    Yesterday afternoon I got a blessed sudden burst of energy. First time in ages. In fact, I took my dog for a walk. So, I guess that sometimes venting on this page helps let off steam that is making things worse. Thanks for being supportive. MsE
  11. Mikie

    Mikie Moderator

    Both my daughters have FMS and one also has Lyme, plus they have other connected conditions. My Mom had FMS and her Mom likely had it also from what I have heard about her. So, in our family, no need to explain.

    I have friends who are supportive and some who, I know, have their doubts. I don't care. I do what I can but don't overdo it. I miss out on some things I get invited to but don't feel like going to but, before I got sick, and after my divorce, I sowed my wild oats and partied hardy. I'm lucky that my kids were grown before I, and they, got sick. In Mom's case, she had a huge flare of FMS but recovered from it.

    We are the only ones who truly understand. That's why this is such a special place. Our members are truly kind and generous. I feel lucky to be here.

    Love, Mikie