Who refuses to let FM rule your life??

Discussion in 'Fibromyalgia Main Forum' started by paulac7, Aug 6, 2009.

  1. paulac7

    paulac7 Member

    Hi all--long-time lurker, first post for awhile.............

    I have FM along with a plethora of other ailments--namely MCTD, but I *REFUSE* to let my medical problems take over my life.

    Sure, I have my bad days when all I do is lay on the couch and radiate 'hatred and misery' to all four points of the compass, but on the days I do feel halfway decent, I try to do something to be semi-productive, and make each and every day count. It may be as simple as folding a basket of laundry, or as challenging as going for a ride on my motorcycle. Basically I do what I can, when I can--so what if my house isn't spotless, or I hang out in my husband's sweatshirts while at home. I don't sweat the small stuff--life's too short.

    I was just wondering if there is anyone out there like me who refuses to curl up on the couch and let this disease rule your life.
  2. daynakb

    daynakb New Member

    but I try. I've given up caring if the neighbors see me in the backyard wearing my pink pajama pants and orange tshirt. I don't make my bed everyday either. It's liberating.
  3. JewelRA

    JewelRA New Member

    I am having to learn the delicate balance between not giving up and doing nothing and not pushing myself past my limits. It is very hard. There is so much more I wish I could do. I just posted about going to the beach - my first time away from home in 4 years - and I think I may have "pushed it" too much. But, gosh, I hate the thought of letting FM take away family vacations from me.

    By the way, welcome, paula.
  4. paulac7

    paulac7 Member

    It definitely is a 'balancing act' one never really manages to perfect, but I also feel that I don't want to be 90 years old (if I live that long), and saying "gee I wish I would have..........(fill in the blank) when I was younger.

    Thanks for the welcome, I have been registered since '05 I believe, but never posted--just read.

    LOL about the pink PJ's--like you I could care less what the neighbors think--they think I am 'eccentric' anyhoo..........

  5. gapsych

    gapsych New Member

    This is the third post in three weeks concerning this topic.

    The last two posts were by members who had not posted in a while. Coincidence? I don't know so I can't make any judgements.

    But I am wondering if feelings are a bit raw on this topic and would hate to see us heading in the same direction.


    [This Message was Edited on 08/06/2009]
  6. paulac7

    paulac7 Member

    I'm the same way, glenp--if I am doing something I will go at it until it's finished, but if I putz around too much, I'm done. For example, last weekend I helped a friend move out of a second story apartment (not on my top ten list of fun things to do, believe me), and as long as I was running up and down the steps loading my truck, I was OK, but when we drove 20 miles to his new digs, by the time I got out of my truck I was ready to fall over and die. Drank a soda, had a smoke, gave a big sigh, and proceed to start to unload the truck. Within five minutes, I caught my second wind (?) and was good to go again.

    The next day I was paying for my sins, but not as badly as I thought I would be. So I guess what I am trying to say is in my typical long-winded way, your post *does* make sense to me.

    By the bye--what's "pots"

  7. gapsych

    gapsych New Member

    I am confused but could be fibro fog, LOL!!You said in a previous post that your wife has FM or was I misreading that post. Wouldn't be the first time

    Do you also have this?

    [This Message was Edited on 08/06/2009]
  8. paulac7

    paulac7 Member

    I was replying to glenp and missed your reply (sorry).

    Prior to today I have posted 3 (three) times; which actually was my husband posting under my name looking for some insight as to why I sometimes am the way I am.

    I am not trying to start any drama, or hate and discontentment. I was just wondering more or less aloud if there were others like me who refuse to bow down to the 'sacred' FM gods of 'Thou shalt not'.

    Sorry for any inconvenience or hurt feelings.

    We must be posting at the same time LOL!

    [This Message was Edited on 08/06/2009]
    [This Message was Edited on 08/06/2009]
    [This Message was Edited on 08/06/2009]
  9. bigmama2

    bigmama2 New Member

    i have cfs but no fibro. the severity of my cfs waxes and wanes. when i am doing better/am able- i "do things"- fun stuff, social, productive, mundane, etc. when cfs flares up- i do what i need to do- which is be in bed sleeping or resting (or to be honest- suffering). sometimes i do fight it and push myself too hard to do - whatever- a special event or something. usually then i "pay" for it after- have to be in bed. sometimes it is worth it, even thought i pay for it later. its kind of like "pick your battles". meaning i overdo my limits only for stuff that really is "worth it" to me.

    i also understand that those cfs or fibro patients who are so severly ill- do not have a choice. i deeply feel for you all. when someone just "can not", they just "can not". it is what it is. it is not always a matter of choice.

    best wishes for healing and coping for all of us
  10. Rafiki

    Rafiki New Member

    I don't have FM, but ME, so I cannot comment on this from personal experience.

    I can tell you that your question, "I was just wondering if there is anyone out there like me who refuses to curl up on the couch and let this disease rule your life." springs from your lack of time and opportunity to read the experiences of many people here.

    There are many people on this board who's willingness to carry on caring for sick children, elderly relatives or unsympathetic spouses is mind boggling. There are people who work every day in constant pain and then pick up their kids from school, take them home, make them dinner, help them with their homework and put them to bed before "curling up on the couch."

    As someone with fairly severe ME I am sometimes jealous of how active some people manage to be until I remember that many of them are in constant, terrible pain - then I get a grip.

    I have two friends with FM in real life. One has mild FM which interferes with her life very little. She has chronic pain but it is below a manageable threshold. I know this because she has told me. My other friend cannot pick up anything from the floor, get into his car, sit at a desk, walk with anything like a normal gait... They may have the same condition but their situation could not be more different.

    You're new to this. I think your positive attitude (I'm a huge believer in living every moment mindfully) will help you a great deal in dealing with your particular FM experience. In time you will learn about the broad range of experience and, probably, how not to "radiate hatred and misery" on the bad days. It's a learning process.

    All the best to you,
  11. paulac7

    paulac7 Member

    Hello Luminescent!

    Your post was most informative and enlightening. I too agree that levels of suffering and pain can differ from person to person--given the same pain, one person might be totally out of commission and unable to function, yet someone else might take an ibuprofen and carry about as usual. I also agree that this disease *can* disable a person's body to the point of where they have no choice in the matter, either.

    I am not implying that I have any 'special powers', or that I live a pain-free life. Far from it. I take enough meds to choke a horse, and they allow me to function in my daily life. I was not trying in *any* way to imply that everyone could be like me (and I appreciate you realizing this).

    I also realize that there are many on here who experience worse pain and fatigue than I do, as there are probably many that don't have the severity of my symptoms, either. Basically if you could sum up my life in one word, it would be a big red inkstamp marked *MEDICAL*.

    I do believe in positive thinking and for the most part I am a very positive person, except every now and then I get in what my husband calls my "black moods" where nothing seems to be good in my life, but that's another story for another time.

    Another thing is that I am very stubborn--the best way to get me to do something is to tell me that I 'can't do that anymore'. Ten years ago I couldn't walk, at least until they finally figured out what was the matter with me and I finally got some decent treatment. I was supposed to have knee sx because there was basically no cartilage remaining in my left knee almost 8 years ago, and for reasons which are too detailed to go into at this point in time I decided not to have it done. One of my so-called 'friends' said basically my Harley-riding days were over. I still ride when I can, and my truck is a 5-speed (left leg for clutch) :)

    "There was a case of a British lady with terminal cancer, she performed what some would claim to be a miracle by completing a triathlon she was dying - ultimately, she still died."

    I see your point with this--you cannot *change* your body's illnesses and diseases, and they will still progress with or without your consent, but I admire her courage to train and complete a triathlon, even though she knew what her ultimate fate would be.

    On a personal note--back in the early 80's I had a brother with AML (leukemia), and he ended up passing away. But to get to the point, he was a truck driver by profession, and when he could no longer do that full-time, and moved back home due to complications, he had a friend that would let him drive once in a while (kind of an under-the-table thing). Anyhoo my brother would be in the bathroom projectile vomiting (sorry) from the effects of the chemo, but if his buddy called with a load for him to run, it was almost a miracle; within 2 hours he would regroup, and be good to go to on an interstate run for 2 or 3 days with no problems. As soon as he got back home, within 5-6 hours, his pain and nausea would return. Mind over matter? Who knows?

    Like I stated before, I'm not trying to make light of anyone's problems or pain or any other issues they may be having. I'm also not saying I have a magic decoder ring that I use to make my life better. I just wanted some input.

    "We are all at the mercy of our physiology, cellular states and genes at the end of the day"

    I could not agree with you more, luminescent--and I enjoyed reading your post.

    Didn't mean to ramble on with my life story, though.........


  12. fibromickster

    fibromickster New Member

    Yes, I refuse to let this DD run my life, well actually i have no choice in the matter. I HAVE to keep going, i have a family that i brought into this world. Maybe one day when they are old enough to take care of me I will give in, LOL. NOT

    I am fortunate that i still work full time and i think that is what keeps me going, having an everyday routine. It is horrible in the mornings for me and yes, i sure would like to say forget it i will just stay in bed because i can't stand this, but then i think of my children and i make myself move throught he pain and exhaustion.

    I am sure there are people on here that have it much worse and they have no choice and i pray for them everyday and i also pray that i can keep this up for a while longer.
  13. sweetbeatlvr

    sweetbeatlvr New Member

    i feel for all of those that are unable to do things, because their illness is really bad.

    although i hate having FM, i feel very fortunate that i am able to work and keep up a semi-normal life.

    when my FM first hit, it was alot worse, and although i still worked, i wasn't able to do much of anything else.

    thankfully, my symptoms have improved some (or it's just the fact i have more steady treatment), and i am able to do more.

    i also feel better when i keep moving, it's when i stop that my symptoms get worse.

  14. Good for you. I really try and push myself but after having fibro for over 30 yrs it has gotten more painful and really hard as this dd wants to rule my life. However I am not one to lay in bed or couch as it hurts my hips and back more. I wish I had more energy. I do manage to clean my home etc, a bit each day when I can.
  15. Debra49659

    Debra49659 New Member

    at the title of this thread. Just cause I have felt that FM won a long time ago. I wish I had the strength to pick up and carry on, but I can't, simple as that. It has nothing to do with not being positive or not trying.

    I can't walk the dogs anymore unless I take my scooter.

    I can't be giving a big bear hug by my kids, I'll take the gentle ones though please!

    And I can't have a physical relationship with my husband of 14 years, but I'll make do with the emotional one.

    I can't spring clean my house anymore, the best I can do is pick up throughout the day.


    Am I lying around all day not doing anything whether I can or not. Well no, but I don't consider this to be a victory for me. I have lost to much.

    I'm sorry if I seem negative but it is how I feel:)

    Pardon me now while I have a good cry.

  16. ilovepink4

    ilovepink4 Member

    Deb, i am in the same boat.... I can't understand "refusing to give in"???? I don't have a choice....i will cry in public because I can't help it ....the pain and exhaustion is too much....it hurts to breathe....i am bed bound most of the year.....summers are sometimes better and i am overjoyed to be able to go to the store for toilet paper!

    this summer is horrible for me....i am so disappointed.....the weather isn't good so i am suffering like it is winter....no matter how much i wish it away, the pain is controlling my life....the exhaustion makes my head spin....until i go to sleep!

    i don't have a choice.....and when someone suggests that it is a matter of refusing to give in to the illness, i feel like i am back in the doc's office being told this is just depression....or i need to exercise more.....or that fibromyalgia doesn't exist
  17. paulac7

    paulac7 Member

    Gee whiz, didn't mean to upset anyone by my post.

    I was just saying that *I* will not let this disease get the best of me, for as long as I can possibly help it.

    I am *NOT* implying that fibro and all of the joys that it brings doesn't exist, or that it is all in your head, or whatever--I *also* have fibro, MCTD, depression, the whole nine yards. And I am not trying to lump everyone into the same category physical-condition-wise. FYI 10 years ago I couldn't walk due to the MCTD and possibly fibro. I was at my wit's end, and in a bad place, both physically and mentally. I gave serious thought about living life in a wheelchair, unable to even do the most basic of tasks, and thought "I will not live like this" and started to consider some serious alternatives. Needless to say, that was one of the many low points of my life.

    By the grace of a Higher Power, I found a dr who ran the right tests at the right time, and with some high-powered meds, got me functional again. I swore to myself that I would never let my health issues control my life to that extent again. In 15 years, will I be unable to walk again? Very possible, but I would like to think that I will have a custom-made scooter by Harley-Davidson to get around in.

    I am also not saying that it is something so simple as 'refusing to give in'--I wish it was, though. There is nothing simple whatsoever about having any chronic illness. I was just giving my personal input on how I was mentally dealing with *MY* health and pain issues, and not trying to disrespect those that have different experiences than I do.

    I am truly sorry Deb, and ilovepink, that both of you are not feeling so well, and I sincerely wish you all the best in your personal battles with this illness.

    Have a good evening, and once again, I apologize for any misunderstanding.........


  18. debra even though I posted a bit different above, I am really more like you. Its sad how fibro can rule your life, I just TRY everyday to fight against it, but like I said it is getting really hard, especially when the pain is so bad at night it keeps me up at night.

    I really can't do 1/8th of what I used to , its sad . so cry if u need to, I have many times.
  19. Debra49659

    Debra49659 New Member

    thanks both of you for understanding and sharing, I was a mess yesterday because this post just got to me. And paulac7 please don't think I was angry with you for the post or upset or anything. You asked a valid question and I don't want you to think I blame you for the way the post upset me, K:)

    I am the classic hider of the way I feel, if I don't acknowledge it, I don't have to deal with it. I too Paula deal with depression. When I saw this post I had to deal with the anger and sadness of the way FM was changed my life, and what hurt was that I had too deal with the way things really are and not the way I want to perceive them to be. Does that make any sense, my brain is so foggy this afternoon.

  20. paulac7

    paulac7 Member

    fibrobutterfly wrote: "I just TRY everyday to fight against it, but like I said it is getting really hard, especially when the pain is so bad at night it keeps me up at night."

    That is my point--to at least TRY to fight--to not give up the fight, even though at times the task seems impossible. I also have some sleepless nights myself.

    I am hopeful that there will be some sort of breakthrough in the treatment options open to us...I try to never give up hope. Remember less than 100 years ago people were dying like flies from the common flu--until the 1940's when Penicillin came onto the scene.

    Debra: I am like you to some extent that I have the 'ostrich syndrome'--I also tend to 'if i don't see it, it doesn't exist'. You didn't upset me, so rest easy on that account. I too sometimes look back on the way I 'was' before I got sick (working 60 hrs a week, being able to function on 3 hours of sleep, etc......) and it bothers me somewhat, but I am resigned to the fact that that part of my life is over.

    Again, I am actually surprised that this thread has gone on this long, and I appreciate everyone's time they took to respond to me.

    Interesting fact about Harriet Tubman (sorry, forgot who posted that).

    Have a good weekend!