CFS, Have Tried Everything I Know, Nothing Seems To Last

Discussion in 'Fibromyalgia Main Forum' started by greatgran, May 4, 2006.

  1. greatgran

    greatgran Member

    Soon will be six years that I have been trying to get to a point that I can function daily..After many tries I am begining to feel hopeless with doctors, meds, supplements etc..nothing seems to last..I get my hopes up, maybe I am expecting to much..

    So I have decided I have CFS and for now it will be with me..I am going to accept the fact that I am "ill' and stop trying to be and do normal daily things..Accept my limitations and live within them is the only way I am going to survive mentally and physically.

    I don't understand how one day you can feel almost well and then in hours be in bed for days..My family thinks I am a basket case and keep pushing and when I say no or I just can't, oh, the rolling of the eyes..They were very supportive in the beginning but now this is getting old to them and if I didn't suffer from this I would never be able to relate to the many phases we go thru. Heck, I still don't get it...

    This is my grandson's last week at college and for a year I have been telling him I would be there to see him and he is begging me..I do want to go but its 3 hrs away and I honestly don't thing I can make the trip and must admit I am afraid to try..So what do I do?? Which is worse stay home and feel guilty or try to go..Sorry, got off topic a little here ..

    What helps me the most is REST, xanax,multivitiam, what few supplements my stomach will allow, trying to eat healthy and of course Prayer. There are days I feel so bad I can't even do these simple things..

    Thanks for letting me vent, wondering if anyone else is just "hanging on". Would appreciate any input..

    God Bless and Prayers,
    greatgran




  2. KMD90603

    KMD90603 New Member

    I think one of the hardest parts is, like you said, how you can feel almost normal for a while and then, within a couple of hours, you are unable to get out of bed.

    I don't know if there's truly one thing that works the best for everything, it really is trial and error. For myself, I continue to push through the fatigue and other symptoms for as long as I can. I don't have much of a choice, I have a 5-year old son, I work part time at the hospital, and I am a nursing student. So, I have a lot on my plate. But, when things are getting really bad for me and I'm in the midst of a bad relapse, I allow myself the extra time I need to rest. Last night, I went to bed at 8:15pm and slept until about 6:45am when my husband woke me up. I woke up this morning still feeling awful, so I will continue to rest until I feel like I can function again.

    It's a matter of knowing your body and your limitations. And some days will be ten times worse than others. I know what you mean about barely hanging on...because I'm right there with you. the only thing keeping me going right now is knowing that soon my summer vacation from school will be here, and I'll have a lot of extra time to rest if needed, as well as play with my son and have fun with him.

    Gentle healing hugs,
    Kim
  3. Adl123

    Adl123 New Member

    Dear Greatgran,
    Wow! I just posted on this subject, but what you want to do is a lot more important than what I want to do.

    I have come to the same conclusion as you . I have what I have, and I just can't keep on pushing any more, and then feeling bad about myself for failing, or getting sicker. I have just "let go" of my meditation group. I realized that fact just this week. I just cannot live up to other people's expectations any more.

    Nor can I explain, hoping they will understnand.In fact, I have just decided that I'm not going to commit to anything for a while. I'm almost 70, and I'm just plain tired of responsibility. I'm on strike!

    I can imagine how painful it is that your famiily is tired of your're being sick. I know they love you. People just get tired. Being healthy, they just don't understand.

    About your grandson- How about sending him a video with a message? That way he will know that you care and I'm sure he'll understand. Young people love having their families at graduation, but, let's face it. I don't know what he plans, but most go off with their friends for some fun,afterwards, anyway. This is a high excitement day, filled with promises of the future. A video would give him something to keep, and view again, at his leisure.

    Good luck, and a big hug,
    Terry
  4. greatgran

    greatgran Member

    Kim, how in the world do you care for a child and go to school with this dd? I can't plan from one minute to the next...God BLess you for pushing on..But please take care of yourself..Sure hope you get the much need rest this summer..

    Terry, just read and posted on your post..We sure are on the same wave link today..Thanks for your advise it depends on how I feel in the morning I may try to just push beyond my limits one more time...

    It is so hard to accept that we have limitations...Aging is bad enough and this with it, is just to much...

    God BLess,
    greatgran
  5. Jordane

    Jordane New Member

    I am so sorry you are having a bad flare up.:>(
    And its an awfull dilemma when we have to choose to go to a family event,which in our hearts we would LOVE to be there for them,or stay home.
    It hurts us and them.But I am sure that he will undestand if you cannot make it.He knows you love him to pieces,not being there doesnt change that.:<)
    When I cannot be there with them,I tell them that my heart is right there with. Because they KNOW that we WOULD be there if we could.
    I have missed out not having my grandson(5) here with me for a sleep over(his words),like we used to.:>(
    But he knows his nana loves him.When my daughter calls or I call her,I always get my grandson on and tell him that I love him,as big as a house.:>)
    And I send him letters,silly,fun,and filled with love!
    I am sure you pass on the love to your grandson.And it will be with him,even when we are not there beside them.
    I did not mean to take this long to tell you this.Got
    diarrhea of the mouth.:>)
    Will keep you in my prayers,so that you may make it.But remember He sometimes says no.But He will still be there with you,with all His love.:>)
    Take Care,God Bless!
    Jordane
  6. Shannonsparkles

    Shannonsparkles New Member

    Wrote this in a e-mail to my grandma this morning. She was telling me about the latest thing that could help me. I just don't want to hear it any more. I'm 23 years old, been sick basically my whole life, and getting sicker with every move I make. I'm disabled and living at home with my dad. Here's what I wrote. Some of us can probably relate to it. I'm a positive person usually, but I've had another diagnosis suggested to me, along with ANOTHER course of treatments, and finally I snapped:


    "I'm sorry I'm so cranky grandma. I've had another medical carrot dangled in front of my nose lately. I am beyond getting my hopes up. Any news of a new treatment to try just makes me angry and scared. It's like, great, what THIS time??? Everything I have done over the years has either (1) cleaned up my lab results, but not made me feel better; (2) done nothing at all; (3) helped very very slightly for a little while, and then I crash again; (4) made me a heck of a lot sicker very quickly. And despite all the runaround to every doc who's name is worth something in every medical modality, I continue sinking faster than a stone in a lake. I feel angry, helpless, and bitter at the new diagnosis suggested. And I'd love to tell those jerk doctors that they are all idiots and that nothing they can come up with will work for me.

    "And I could strangle the next person who tells me to keep a positive attitude and not lose hope. Hope is what I was running on all along, and it doesn't get a person anywhere. Well, maybe it could help someone who has a COLD, and then they get over their COLD and say it was hope that cured them, when really it was cough drops to supress symptoms and a flawlessly healthy immune sytem that cured them and they were never that sick to begin with and they never knew what it was like to be crushingly ill for YEARS as more and more of their personality and ability is whittled away until they are not even a shadow of who they once were!

    "Thanks for the ranting space. I'll do just about anything to get better, even a little better, and I always give it my best shot. AND, until now, I've always gotten my hopes up too. But now, I'll believe it when I see it. And I'm so sick now that I can't afford to get any sicker, and that's just what trying a new treatment could do to me. I don't want to end up in a hospital getting pumped full of and fed stuff my body reacts badly to just becuase I was sucker enough to think that some new treatment could HELP me. But maybe I would end up there anyway? By the way, I am serriously sensitive to MSG in any form and anything related to it, and it's in all prepared food (read, hospital food) and many pills and even in IV solution sometimes, and I'm sensitive to chemicals and foods and basically everything.

    "Why is THIS my life? Why did the universe decide to take a big dump on ME? Couldn't it have spread all this around a little more, and made ten moderately unwell people instead of dumping everything on me? I used to be an artist. Now I can hardly hold a pencil or brush my teeth. How BAD is this going to get?"

    Sorry for the downer post. There's nothing like writing to take out the emotional trash. My 'inner psychologist' is telling me that these are all likely normal reactions and feelings to have for someone in my situation. Okay... how do I get OUT of my situation???
    (((sigh))) Shannon
  7. greatgran

    greatgran Member

    Jordan, thank you for your input and we don't understand this but "no" seems to be my word lately..I can dream but deep down I know I probably won't be able to make it..I just don't have the strength..

    I have never had a good full week without a crash..How I long for a month off from this..

    Shannon, I am glad you are expressing your self..Sometime when I come on the board everyone seems to be getting well with new treatments etc..I am happy for them but at the same time wonder why they don't work for me..
    Don't hole your feeling in, get them out and tell it like it is..

    Have any of you not had one good week without a crash? Sometimes I think I stay in a crash just at times worse than others..Of course there is that what if there is something more...

    Thanks to each of you,
    greatgran
  8. Marta608

    Marta608 Member

    Bless your heart, I relate totally. I've been working on understanding this for twice as long as you and I'm not much closer. I do know that there is beginning to be some good research and some viable findings, and that for most of us, our neurotransmitters are off-track.

    But I'm going to stick my neck out here and suggest you go to your grandson's graduation - as long as someone else is driving, you have snacks with you, plenty of water and a pillow to doze on the way and coming back. I find that when I take a deep breath and DO IT, the reward in self-respect is worth the days of downtime I'll have afterward.

    Mind you, I don't do this often. Only for very special occasions. For instance, I missed Easter dinner with family and my birthday but I'll go to my granddaughter's dance recital in the evening.

    As a dear, highly educated friend once said to me: Sometimes you just gotta do stuff.

    Hugs,
    Marta
  9. jarjar

    jarjar New Member

    I had the CFS label stuck on me since 1988 but finally started turning the corner when I went to a Lyme doc and had the Igenex Western blot taken last year. I don't remember tick bites since I was young but 50% of lyme patients don't remember being bitten by a tick. Even mosquitoes carry it. I was one of those that always said no way do I have lyme...as I had hight EBV at one time.
    Just something to think about.

    jar