Do We Ever Get Well?

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

  1. jaminhealth

    jaminhealth Well-Known Member

    I upped my potassium, I was within the labs but LOW end...and it's made a difference in energy and wellbeing.
  2. ...My heart goes out to you! I think we can ALL relate to what you are feeling... It's understandable when we are feeling especially bad for long stretches and there seems to be no light at the end of the tunnel.

    I'm sure most, if not all, of us have had our days where we are discouraged and/or depressed... It's a natural human response to intense suffering and disability. Our bodies can feel like prisons at times!

    But as so many have already mentioned, the important thing is not to STAY discouraged. Reading the stories of those on this board can be very encouraging and helpful. Also, reading encouraging books or devotionals can be very uplifting as we continue to try different things to feel better.

    I've had health problems most of my life, since age 11, and I'm almost 50. Fibromyalgia kicked in the summer of 1995... but the thing that knocked my legs out from under me was the ME/CFS in January of 2004 after a long bout of mono. I too have been bedridden for long periods, sometimes temporarily paralyzed... And over the years I've had moments where I felt so useless that I prayed for death. But thank God, my faith and God's Presence in my life has always carried me through. And now, I realize that I am a stronger person on the inside (spiritually and emotionally) because of all I've been through (and continue to go through)... And I'm sure that's true for all of us.

    Even in the midst of our pain and suffering, there are always things to be thankful for... And I find that counting my blessings always chases the blues away. But I totally understand how you're feeling, as we all do...

    I hope it helps to know how much we all care... So please don't give up... Hold onto hope... and hang in there. I will be praying that you start feeling better and that you find something that helps you to start improving...

    Keep us posted! God bless you!

    Blessings and Gentle Hugs,
    Shel :)

  3. MsE

    MsE New Member

    No. I have given up the notion that I will ever get well. I hang on to the idea that I may still have some good days, but that's it. Ever since I lost my breast to cancer, I've gone downhill.

    Now I'm dealing with chronic neuropathic pain from the mastectomy along with the weariness of CFS. I've also developed peripheral neuropathy in my right hand. Accepting is difficult, my friend, but what else is there?

    Like you, I can't take many meds--react to them--and what I've been using isn't doing much good any longer.

    I don't have any advice. I wish I did. All I can do is sympathize. MsE
  4. 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.
  5. greatgran2

    greatgran2 Member

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

    greatgran2 Member

    I so agree .. Sorry you have to feel this way..
  7. 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.
  8. jaminhealth

    jaminhealth Well-Known Member

    feeling, I would NEVER let that come into my mindset...

    I am what I am and "they" are what they are.

    I attempt to keep up with no one.....I spend a lot of time alone and go and do as I need to and please to. But I'm also content. In pain but content. I refuse to fight it....

    The only recent time I almost felt like ME was on Anatabloc
    9 days, and I had to go off it as I ran out, it SHOULD arrive today in the mail. jam
  9. 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]
  10. jaminhealth

    jaminhealth Well-Known Member

    of hearing you look so well, when I fix myself up, I do look good and not in pain, etc....

    I guess everyone has to handle their emotions they do...thankfully I have only 2 grandkids and they are teenagers and busy with their lives...and no time for me's OK...I don't like to bring them down with my pain.

    I still can look as the glass half full and hopefully will forever...I'm sad now since my grandkids' dad is dealing with stage 3 lung cancer....that's a real heavy one...HOPE he can make it thru treatments, and lick this....

    My focus at this period in my life is talk radio and I love it and even participate when the topic appeals to me, I called in today with comments on a subject near and dear to my heart, I play bridge a couple times week, one day less than before hip replacement, which has made my body so worse in many ways, and I love being on health boards sharing my info with many....and I learn so much from so many I connect with online.....this is how I spend my days....

    I painted for 3 yrs and no longer have any desire....

    And I'm still open to NEW treatments....that's why I'm springing for the Anatabloc, I did feel some noticeable relief with pain and even was getting better sleep. It's very interesting and I have a post about it here....

    And I truly believe being in an angry state makes our health worse...true I have no clue how everyone feels and what their pain is, but I know mine and things have changed DRAMATICALLY since age 61....

    Anatabloc looks promising. <br

    MsE: Thinking about some of your comments and re-reading some of this thread, keeping up with the "kids"...I have a LOT of older friends, why would I have young friends, I'm older...and none of them want to keep up with the or not....

    Read/tell grandma sounds good to me.

    Sounds like you put a lot of pressure on yourself.. [This Message was Edited on 01/22/2013]
  11. 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
  12. 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.
  13. jaminhealth

    jaminhealth Well-Known Member

    I understand what you are saying...again we all deal as we do...I don't compare myself to over that a long long time ago. You have lots to be greatful for, gg too all those lovely children and grans and greats.....

    But I see putting pressure on oneself. GG, STOP could be too some grandkids grams are in a wheelchair or even walk right? Don't do that...jam
    [This Message was Edited on 01/22/2013]
  14. 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
  15. ... 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,

    [This Message was Edited on 01/22/2013]
  16. 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
  17. jaminhealth

    jaminhealth Well-Known Member

    I forget what a nice walk is like...I've got to push myself to do that, but everytime I do, my joints all are worse when I come in the house....

    Walking from car to market ok but walking longer feels really unstable for me, the hip surgery stuff and instability of my body NOW. jam
  18. 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
  19. jaminhealth

    jaminhealth Well-Known Member

    Each time I feel defeated, I find something "NEW" to try..... this time it's not really new as I used Colloidal Silver back in 1995 and even made my own and felt so much better back then....

    A lot has happened since then and I got off CS for whatever reasons.....

    So I'm back on and will take it daily, have been reading tons of reviews from those who take it daily and MOST have improved health. My main issues are joint pain aka arthritis.....and other itisis.....

    There is a lot of info on CS and OA and RA and since all is worse with my aging joints, I'm giving CS a chance again......not making my own anymore, but just ordered Silver Biotics and even called the company and read tons of reviews on those using it. Anyway, it can't hurt and don't overdose....follow directions.. jm

    Joints issue are infections as I've read....viral and/or bacterial......