What do you do when you are just tired of being sick??

Discussion in 'Fibromyalgia Main Forum' started by Suzan, Sep 25, 2005.

  1. Suzan

    Suzan New Member

    I know we all go thru this...the ups and downs of a chronic illness. I haven't been feeling well at all for several weeks now, I know in part it is seasonal. We also have some family stress, a MIL in end stage emphysema. But, for me, I am having a heck of a time staying positive. Most of the time I can manage this illness of mine. Of course I do have days where I am barely moving because I feel so darn lousy...but all in all I have managed to keep a pretty good outlook for the 3 years since dx. But lately...boy, I am tired of it all. I am tired of everything being an effort. I am tired of not being able to make plans ...because I am always cancelling them. I am tired of every single darn chore I do being an effort. I am tired of being no fun. I am just worn out by it all. I don't think I am depressed...even though I KNOW how this sounds when you read it. I still find things to make my self happy...I paint, I sew, I have people I stay in touch with on a regular basis.

    I just seem to be in a place where I have a hard time finding the energy of life.

    I am not sure anyone has any brillian words of wisdom about this ...but I would sure be glad to read anything that you can offer. I am expecting that most of us feel like this at times...It is just hard to be sick every day...and I have had 2 whole days since LAST summer where I would say I felt really good. TWO DAYS IS NOT ENOUGH!!!!

    I don't mean to sound like a child about this...but I guess in a way that is how I feel right now. I want to go pout. I want to get my way. I want someone to just feel sorry for me and work hard to cheer me up. I want something DIFFERENT than what I am getting every day. I want to be fixed...and yet I know there is no fixing this...there may be improvement from time to time..and breaks in the cycle..but at this point, no real fix.

    So..thanks for taking the time to read this...I just had to go somewhere will all this stuff. I tried to talk to my husband this morning..but he really wasn't quite getting it..and ended up just saying..if you need a break...you just can take one. But , it isn't just a break from chores...or participating that I want...I want a break from FMS!
  2. stillfighting

    stillfighting New Member

    Suzan,

    I had to retire from my job on disability because of FMS and what my rheumy euphemistically calls "autoimmune complex". Personally, I think he's not sure what's wrong, but I have weird antibodies and feel rotten and in pain most of the time.

    Mostly, I try to keep a positive attitude by having longterm goals and shorter term ones and by pacing myself. I also try to get out most days. But when things really get bad, I find the only solution is a pity party. I only allow myself a day to whine, pout, play morbid music, dress in gray or black, and usually get it out of my system by late afternoon. The party ends by making a list of all of my positive qualities and accomplishments despite these DDs. The pity party works because I'm able to place limits on myself.

    Dealing with this DD is definitely a challenge. We're lucky that we're able to carve out some time for ourselves so we can do things that limit our symptoms. For me, it was a lot worse when I was working, since the only way I could pace myself was to shut down completely--not the best strategy. I get frustrated sometimes that I can't do what I once was able to do before getting sick because I get so fatigued. But I've also found out that you can get an awful lot done in 15-30 minute spurts, and I take pride in being able to remain independent. It all comes down to changing your definition of who you are and what is important, and being comfortable with that.

    Hugs,
    Hilary
  3. Mareeok

    Mareeok New Member

    After you've done the pity party and after venting here take a 'washing the blues away' shower or bath. Use your favorite scented soap and enjoy a leisurly wash picturing the 'blues' getting washed off you and down the drain. After that use a nice body cream or powder and tell yourself all the good things about yourself (no reverting back to the pity party now). Remind yourself how good you are at endurance...at having compassion for people who suffer...your ability to show love to people etc...etc. Validate your triumphs. If you start to say there aren't any you may need to jump back into the shower for more scrubbing. LOL.

    Try it, it works.
  4. kim840

    kim840 New Member

    Suzan,

    You don't sound depressed.... you're just dealing with reality. We have all felt the way that you do. We understand and care! Isn't that wonderful? We have a place to come and cry and everyone knows and cares?

    I have been dx for 7 years now. I stopped working upon dx as I knew it was not going to go away and that stress was a huge key. I got right on SSD.

    I still have times when I have a wave of reality splash over me. Like the donating blood thing. I wrote a post about donating blood yesterday for the first time in years and feeling really ill because of it. A little thing like that. It is discouraging.

    So, what do I do..... well in many more ways I have been blessed by it. If I didn't have it I would still be working and running from here to there. Since I've stopped working God has used me in enormous ways to help and bless my family and others around me. Which in turn blesses me. I cannot imagine not being able to do the things I have been able to do because of the FM.

    So, when "reality" hits, I just try to immediately flip from the losses to the wonderful new gains and doors God has opened for me through this and the uncountable blessings.

    New ways of living other than planning every minute and every committment. Being on some rigid time schedule. In fact, I will not wear a watch! And I am so much more spontaneous. We have to be!

    I taught womens' Bible studies and counted that as a huge loss due to not being able to commit and with the cognitive and fatigue issues. I sure wondered what God was doing. Yet, I have ministered to so many women in many other ways as God has brought opportunities to me.

    My mom had cancer 2 years ago. I was able to be with her for every moment of it. Had I not had FM I would not have been able to do so, I would have been working.

    My daugher-in-law had 2 difficult pregnancies and has one special needs child. I have helped and continue to help through all of it.

    My daughter had a difficult pregnancy and she was able to come live with us (from a small town in Utah that did not have adequate medical care) during her pregnancy. I took care of her as she was bed ridden and took her to her MD appts. Again, if I had been working..... She had a beautiful and healthy son.

    I could literally go on and on. These are just a few examples.

    I believe that in time your hubby will understand more and more.

    I'd like a break too. Yes and Amen to that! Just even a day to feel what it must be like to be healthy and strong. I know that until then, whether that be in this life or when God choses to take me home with Him and make me whole, that His grace really is getting me through this as it holds me ever so sweetly and close to Him.

    I'll be praying for you dear one and may God's grace fall upon you too.

    And wow, Mareeok's idea is a great one! Pamper yourself, it feels really good!

    Always Hopeful,
    Marcia
    [This Message was Edited on 09/25/2005]
    [This Message was Edited on 09/25/2005]
  5. JPach007

    JPach007 New Member

    Hi...
    I know exactly how you feel. I think I am in the same shape you are. When I read your sentance about not being able to find energy for life...that really hit home. I am tired of not enjoying the things I used to...like my husband for one...my job sends me into exhaustion, and I dont really work that hard.
    This morning (after a half way decent day yesterday), I got up and decided to wash the windows, clean the screens on the outside of our house...You can imagine the mess that threw me into this evening. Back in my rut. If you find something that works to bring that energy for life back, please let me know!
  6. abbylee

    abbylee New Member

    I cry and I cry until I can't cry anymore. Then, I compose myself as best I can, and try it one more time.

    I'm 54 years old, and have been doing this since I was 12. I've cried a lot over the years.


    abbylee
  7. JLH

    JLH New Member

    Nothing. There really isn't anything you CAN do.

    I am 54. I have been sick all of my life. Well, since I was 10. That is when I developed fibro and Lupus, but the doctors just did not know what to call it then.

    I have progressively gotten worse as each decade moved on. I also started getting more and more medical problems and the time moved on. I also had more surgeries and the years went on. (See my bio for current list of medical problems.)

    I somehow managed to work 30 years. I took early retirement due to my illnesses.

    I am soooooooo sick of being sick sometimes that I will do as "abbylee" said that she did -- just sit and cry. I will feel so badly for days that no matter what anyone will say to me, I will just cry.

    It helps to stay on an anti-depressant. I am currently on Cymbalta since it helps with the fibro pain.

    Some days I will get depressed and just stay in bed all day.

    My husband and I are home alone now since all of our children are adults and out on their own. I can't talk to him because he really doesn't understand about being sick with multiple problems, nor does he really care. He is starting to get arthritis and now he is "hurting" just as much as I am!! LOL (WHAT A LAUGH!!!!!!!!!!!!!)

    My children and elderly mother seem to be "concerned" but none of them really understand how I feel.

    So, basically, it comes back to "there is nothing that you can do!" It's all up to YOU on how you want to deal with it, because YOU are the only person who cares about YOU. So, it's important to be good to YOURSELF!!!!!!

    Take care,
    Hugs - Janet
  8. cshellz

    cshellz New Member

    Suzan,
    thanks for putting into words--so well--how I have felt since last May (maybe even before that...?). I find on my really down days (like today--the pain was BAD) that I just get in a warm shower and cry. My husband doesnt "get it" either--I was just Dx. a couple of weeks ago (officially with FM) but am still getting test like for MS etc. So far Lyme, etc are negative. Thus he thinks b/c there isnt a SPECIFIC test--Dx--Cure for this dd--that "syndromes" are mostly mentally driven. (ie, hormones, emotional, you could just snap out of it with some exercise etc....)
    I think I will print your letter out--so he maybe can see that there is a problem---others have too--it IS real---yes emotions can worsen it--but it isnt ALL in the head.

    I too try to make time and energy to enjoy my hobbies---and I do (thus I see my intermittant "downs" as short bouts of "situational" depression--reaction to pain, lack of sleep and life restrictions--POUT!!!) It is so annoying to choose to do your "chores of life" OR "have fun" or to find a balance b/c there isnt enough of "me" to go around like before! :(

    Well, I'll stop rambling here--just thanks for your good thoughts. We do the best we can, each day---Carry on!
    Good wishes,
    cshellz
  9. Suzan

    Suzan New Member

    I haven't had time to come back and read till today. I knew I would get some positive words...and a lot of agreement on the endlessness of this all.
    I cannot say I am any better that I was when I first posted. But, I am trying.
    It is good to know that you are not alone in your feelings, and so thanks for taking the time to type what you feel as well.
    I am not sure what will change this flare...or this feeling...but something will along the way. Until then I am glad to have a place to go with all my feelings...and I wish you all a day filled with joy!
    THANKS!