Do We Keep Pushing Or Just Go to Bed?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Sep 15, 2008.

  1. greatgran

    greatgran Member

    The longer I have this darn disease the more confussed I get.

    There are days I have no choice but to go to bed, but then there are days I feel miserable but so restless I can't stand to look at that bed and get up and try to accompolish something.

    Then I get afraid I am going to over do, and have to end up in bed for days.

    I know, listen to your body but seems my body has gone haywire, it doesn't know what it wants.

    Today, I feel fatigued but not in pain but feel so anxious, restless, depressed so get up but can't seem to focus on doing anything.

    I have taken a week off from the keeping the little ones but honestly can't tell I feel any better.

    Just venting I am so confussed, anxious, depressed I think I will go outside and scream.

  2. ilovepink4

    ilovepink4 Member

    i have given up...i am in bed every day....but! I had a fabulous remission this summer...and there was no doubt in my mind that I wanted to be up...i felt energized and didn't feel that malaise and complete lack of mind kept thinking of stuff I wanted to do and my body didn't stop me...

    most days when i am laying in bed, I am not in horrible pain...but i know if I get up, i will be in a short, short time....the lack of energy, the overwhelming fatigue are big factors in my life laying around...

    Today, i have nasty pain in all my joints and lymph is called fall in minnesota...

    it is hard to have to adjust back to living in bed all the family had to adjust, too...hubby was irritated again when I couldn't help as much again...i think he thought i was faking it, again....but, after a couple weeks, he is either hiding it better or he truly gets it...

    i want off this rollar, i don't know how you can babysit your kiddies at all...i wish i had your determination or stamina...i only have about an hour or two of being up before i am curled into a ball....there is no fighting through it for me....
  3. Nechama39

    Nechama39 New Member

    I do the same thing and it is confusing. Staying up alot at night too even with feeling so very exhausted? I am really starting to believe that maybe I am not confused and my body is not confused. It is a symptom. When you are tired you sleep and sleep well. When something is wrong with you and you try to obey your body's pleas for restorative rest and you are yet unable after trying, that is a symptom. I go through this vicious cycle. I get totally torn down, try to rest, lay in bed frustrated, eyes heavy and tired, yawning, most of the time in pain, get up walk an equivalent that probably could be converted to miles until 4 or 6 a.m. go to bed and wake up at 7:30 or 8:00 a.m. because the kids need me. They go to school, I want to crawl back into bed, I try and I can't sleep. There is nothing I can do about it. I have tried benadryl at night, prescription sleep aids and NONE of them work, or they don't work until the night is over and then I can't get on with my day. Currently, I have been NOT sleeping well for going on two months now and moderate to severe pain in various places in my body for over two weeks. It is absolute torture. The only thing I can do is just sit or lay if I can't sleep, so I just do that when I can squeeze in the time. But very often, I wind up in miserable shape and unable to do anything for several days. Visiting docs who have no belief in this area only add to the torture. I'm letting you know that you have a buddy who shares this with you and lots more too! Maybe one day the public will listen and the scientific community will decide to really work on this problem for us. Maybe we should all get in our worst states and march on Washington and call it the million painful, tired and cranky people march.
  4. greatgran

    greatgran Member

    Hate you have this but it sure does help to share with someone that can relate.

    I guess maybe my body is telling me I do need the rest, if I don't I will be in worse shape.

    So,I have been up and down and not done a darn thing except think about the things I need to do.

    I am alone today so was looking forward to that, thought I might accompolish something but looks like its going to be a bed day for me so might as well take advantage of it.

    By the way do any of you have the darn off balance feeling or blurry vision. I also have sjogren's so I have been told so that might explain the vision but this darn off balance.

    Well, I have had my .05 xanax so maybe that will help the darn anxiety /depression or help me relax.

    Thanks to all of you for letting me vent,
  5. Rockismom

    Rockismom New Member

    As you know, it could have been me writing your post! Except exchange having children to care for to having to go to work.

    We are all in the same boat and although you realize I have no answers it is comforting in a strange sort of way to know that we are not alone. You validate how I am feeling. If only we could find the answers to making our life not so confusing.

    I would like to suggest first and foremost - Keep your faith!
    Next, find a doctor who is familiar with this dd. (I know this is easier said than done!)
    And last but not least - stay in contact with those who can offer support in one way or another!

    Hang in there!
    Gentle hugs,
    [This Message was Edited on 09/15/2008]
  6. Rosiebud

    Rosiebud New Member

    I know what you're saying, I'm up just now doing this though I've started a terrible flair - the dose of strong painkillers giving me a wee breather.

    I know that pushing myself does NOT help but like you I have to get out of bed, I have to do something, anything. Then I pay the price.....

    Go scream, cry, sometimes we have to.

    [This Message was Edited on 09/16/2008]
  7. vannafeelbettr

    vannafeelbettr New Member

    And an idle mind is the work of the devil" were two phrases my Italian grandmother drilled in my head at a very young age. So, if I dare attempt to lay down, I can still hear my grandmother (God rest her soul) yelling those phrases in my head. So, I ALWAYS end up pushing myself and bitching about it later. LOL!!

    Hang in there!!!
  8. kitteejo

    kitteejo Member

    I hate to be in bed unless I have a fever than I have no choice because I can't lift my head off the pillow.

    What I did is buy a big thick comfortable Lazy boy that rocks and reclines. I'm in it most of the day and evening. I just sit here and play with my laptop. If I didn't I'd go crazy.

    Always listen to your body, if she wants to go to bed go to bed. If she wants to get up for a few minutes than get up. Don't push your self though.

    Best to you,

  9. quanked

    quanked Member

    Me too. I am confused often. I do not know what each day will bring. I start my day with a cup of coffee and take an hour or two to slide into my day. But somedays it never gets going. I have been in a real slump for a number of weeks now. Once I pay attention to how well by brain is functioning and how well I feel I just go with the flow. Sometimes the flow goes no further than me sliding into my recliner. Sometimes I just wander from room to room trying to get something done without ever accomplishing much because I am unable to focus.

    Then there are the few days here and there (sometimes weeks) that I actually feel somewhat energized and do accomplish something. I live for those times.

    I am grateful for your post. I have not seen a post such as your before.
  10. hi all,

    as regards the we keep pushing or just go to bed?.

    its not wise to keep pushing,thats a fact,as ive discovered with my job just lately.

    but i faced a horrible choice and just had to go to bed.

    my whites of my eyes are always pinkish,and look very tired all the time,even though i am getting eight hours sleep at night.

    i had woke up with tiny lumps on my lips which looked like id bitten the lips while being asleep.

    id wake up tired,and thats the part the frustrates me.

    id started to feel panicky,not seeming to cope with anything,and went on sick from work after yet again pulling stomach muscles when lifting things at work.

    i rested at home,then was affraid that my muscles in the arms and legs would become weak again,if i rested too much.

    how can we define too much,too little rest?.

    but this one night,i looked at my eyes,and said oohh fran you look so worn out,go to bed two hours early tonight.

    so i did,and i had the best sleep ever,but with it being for 10 hours,i was so stiff the next morning,but not feeling panicky in myself.

    i think we cant win with this illness,we get too much rest,we stiffen up.

    we get too little rest,we get panicky and dont seem to cope well.

    we go to work and pull muscles.

    we dont work and we just stiffen up and cant walk properly.

    its just a vicious circle,and then depression creeps in.

    im currently back at work,and my boss is understanding as regards how much lifting i can,and cant do at work.he,s getting help for me with various things.

    i had worried that i would have to leave my job.

    being stuck at home isnt something i could cope with,i need to be out there mixing with people,as it takes my mind off the body pain.

    but working over say about six weeks,seems to make my body lose extremes of weight.

    its just a vicious circle with my own health just now.

    whatever you choose to do,i wish you well.

    ive had to go back on anti depressant pills again,and they seem to be calming down the muscle spasms in my back,so im grateful for that.

    i just wish i could put some weight back on,as people at work keep making a big deal about my weight loss.

    i dont know why ive lost it,but all my blood tests came back showing no problems detected.

    take care,love fran
    [This Message was Edited on 09/16/2008]
  11. jenn_c

    jenn_c New Member

    me of my biological "egg donor". She always told me when I was growing up that " if you have enough time to sit and watch tv, then I had time to clean". So I never learned to re;ax. I get panicy if I feel so cruddy and lay on thecouch and watch the tv. The sad thing was that later on down the road, she developed Lupus, Soujourns ?(SP), Fibro, and in my mind MANY MENTAL ISSUES. Take care.

  12. lvjesus

    lvjesus Member

    What I usually do on days when I am actually home and only feel like laying in bed is to get up and do just a few minutes of something when I start to feel sick of being in bed and laying down. I will come in the kitchen, where most of the work needs to be done, and do a few things, like unload or load the dishwasher or wipe up the counter and then my body says, that is enough, and I go back and lay down. For me it is sort of like my mind says, get up and do something and stop laying here (face it, it is boring as hell even with tv), and so I do and then my body says, go lay down, and after being up, laying down feels good and like a relief rather than a chore. Make sense?

  13. Janalynn

    Janalynn New Member

    I think the answer to that question depends not only on the day, but many other factors as well.

    There are times that I'm in so much pain or so tired, that there is no contemplating and I have no choice but to head to the couch or the bed. I don't think those are the times you're asking or wondering about.

    My mind and my body are at constant war with what I "should" be doing. I do know that if I CAN do something, I should do something - it doesn't matter how small it is. Accomplishing something does wonders for my mind.

    I am one (and it's a personal feeling) that knows that the more I do lay around, the worse I do feel - mentally. There is something to be said about having less energy when you do nothing all the time. Again - that is a very personal feeling.

    We're dealing with this w/my Mom - who does not have Fibro btw. We have to remind her to get up, get in the shower etc., go outside, see her flowers etc. She FEELS better when she does. The same applies to me. Some days all I can do is the walk outside, some days, it's just the shower, some days, it's none of the above. I do notice my mood is much lower on those days.

    I work part time. I love being at the office. I love feeling 'normal'. I hate hurting. I've gotten to the point that I don't know what to do when I get home but rest. So some days I can't wait to get home to rest and some days when I feel better than others, I put off going home because I know I'll be back in that 'do nothing' mode.

    I'm fighting mentally big time right now if you can't tell. Having a hell of a time dealing with this (and other things) I have SO much to do at home, like we all do and sometimes I can't stand to see it staring at me cause I just don't have the energy to tackle it. Heck, I dont even know where to start anymore. I used to be SO organized.

    So what do you do? You listen to your body AND your mind and see if they can come together. I think some days they are on the same page. You learn to do what is best for yourself for the moment and the one after that. You learn if what you're going to do is worth the price you may pay and sometimes it is or it might be. Sometimes we have to enjoy ourselves, grab those moments because we don't have a lot of exciting really FUN ones that often. Yes I know that the next day for me, I might be on the couch with bone crushing leg aches, but I have to weigh that out for myself.

    My life has become incredibly boring. I've always said "give me boring" anyday - better than drama or turmoil. But now, it feels boring - not in a good way. (and there's enough stuff going on where it shouldn't be - husband lost his job etc.)

    Good grief, I should be writing in my diary - oh crap, I don't even have a diary. Sorry for my long post, I'm up by myself in the dark, with my coffee, already had to take pain medication because I woke myself up crying with leg pain.

    I wish I had THE answer for you Greatgran. I don't, I think the answer changes everyday. Like I said, I'm trying to get my mind and my body to work together and not be in a constant battle. I think it will be easier when I can master that.
    Love to you all......

  14. greatgran

    greatgran Member

    To Each of you for sharing how you feel, guess we are all in the same boat. Can't let it sink so we will keep fighting.

    Its good to hear that I am not alone.

    I do feel better mentally if I can accompolish getting out and doing something, like today I have had a shower, going to take my greatgran to preschool, then will come home and stay in bed till time to get her.

    When I awoke at 5 am I thought there is no way I can crawl much less get the little one but I am dressed and ready to start out the door. So will push today.

    Thanks again for sharing how you feel with me.

  15. lurkernomore

    lurkernomore New Member

    I have read all the replies to your post and honestly wish there were a set answer for all of us. But I honestly don't think anyone else can decide what is best for anyone else.

    I see suggestions that you push through it, idle hands and all that, and we all know that pushing and taking it too far can also set us up for a huge flare of the worst kind.

    I think that the one thing we can all be in agreement about is that we need to be gentle with ourselves. Not just physically, but mentally and emotionally too. We've all gone through the denial, the guilt and the shame of having to realize that we are no longer the person we use to be, or that we are physically able to accomplish the same tasks we were once able to.

    But that does not make our existance on this earth of any less signifigant. That is the part we all seem to struggle with the most, because we all seem to feel that we ARE what we accomplish. just AIN'T SO! Remember, we are human beings, not human *doings!* And as human beings, we are being faced with a huge challenge to keep going every day with a chronic illness that is invalidated, unrecognized by so many that it is shameful

    But here is the thing, we keep going. We still get up every day and we still try. I know the numbness you speak of and I believe that it is a subconscious self preservation mechanism. As much as I would love to believe that my loved ones, (or anyone around me in RL) would take an interest in what I am dealing with, it often becomes all too clear to me that, most likely, they never will. It's been going on for long enough now that in order to keep from getting angry or hurt, I numb myself so that I feel nothing. By nothing, I mean no joy or real love either.

    So I totally understand where you are coming from and I know exactly how you feel and I am so sorry it is this way for you too. I long for the day that this DD is validated and we can be treated with respect and just a bit of compassion, as other people with more understood illnesses and pain disorders are. In the meantime,all I can tell you is to be gentle with yourself. We are all our own worst enemies, I think.I know exactly what you are going through and the numbness just seems to be my way of protecting myself. Maybe yours is too?
  16. lurkernomore

    lurkernomore New Member

    Greatgran, if you read my above post and wonder why it makes no sense it is because I have just demonstrated the epitome of brainfog! Somehow I had been reading a post (maybe it was made by you, but not necessarily) where the poster was asking where all the joy was.

    This poster was saying that she felt totally numb inside, emotionally. Then amazingly, I switched to your post and read these posts and I managed to combine the two in my mind and came up with.....?? a totally crazy reply!

    You know, I would normally delete it because it seems irrelevant to the thread. But I think I will leave it because it just goes to show that we mean well, even if it doesn't always turn out just right, LOL! And this is a perfect example of why I usually just read here and don't post more often. ;)
  17. greatgran

    greatgran Member

    Thank you for your post, it made perfect sense to me. You described how I feel but you did put a possible reason with it.

    I did post on "What Happen To Happiness" and your reply was very good for both.

    That is one reason I don't post as often as I would like, my mind just embarreses me.

    Thanks again,
  18. PVLady

    PVLady New Member

    I am better these days but when I was very sick, a couple of years ago.. I used to pack up a carry bag with my medications, water, a snack, magazines and needlework and drive to a nice place near the ocean or a beautiful park - I would then park the car and just "be out" for a couple of hours.

    It is very good to get out of the house even if you are hurting. You will be hurting wherever you are anyway. In your car, if you are feel sleepy, you can always close your eyes and rest.

    I also would go and sit at a mall and watch people.

    I started doing this after three years of being practically housebound. I just realized one day I had to get out.

    One warning is to be careful around crowds or when you go out to prevent picking up colds, etc. Take disinfectant hand wipes if you touch anything. Also, I have used Zicam gel (in my nose) to prevent getting colds. I truly believe it works.

    If you decide to get out, I also suggest you get some good "self help" books at the library. There are so many good books to help you feel better emotionally. You can read while you are parked, or sitting.

    This is so tough to be sick but trust me, you can have a little enjoyment. As they say, just take one day at a time - that is all.

    You might want to read about EFT on the internet. EFT stands for "emotional freedom techniques". There is a free 79 page manual you can download. A couple of years ago I printed it out and made a notebook. I took it with me everyday and and read it.

    I honestly believe EFT helped me alot. It is a combination of accupressure and affirmations but very specific - and very easy. It is kind of funny but you tap on certain areas of your body. One is on the upper chest - easy.

    Hope you are feeling better soon.
  19. stschn

    stschn New Member

    You may know that I have been luckey enough to work with Dr. Montoya not in the trial but as a patient. The last thing that any of us want to hear is that we shouldn't do to much when most of us are able to do so little compared to what we did before cfs hit. It you read the erinwilburn post of 9/13/08 you know of the work done by the Pacific Fatique Lab on exercise and what it does to our body-an article on PFL was in the 2006 CFIDS Cronicle. Most of us don't think of every day things such as walking, or standing up from a chair as being exercise but indeed they are. After being referrer to PFL by Doctor Montoya (they only work with a small number of people and only on referral from a few doctors) last June and following their program I can honestly report that I have not had a crash to date and the first thing they said to me was to stop the push and crash cycle. I exercise now with an anerobic program and I have been told that they have seen improvement in 80% of the cfs people they work with regardless of the subset they fall into and that the NIH is doing a study on this as well. I'm also a GG at age 71 and with 8 greatgrands and have been dealing with this DD for almost 21 years. That I'm doing so much better now isn't clear if it's the result of 6 months on Valcyte or 3 months of takeing better care of my body who knows but I believe it's both. And I'm amazed at what I can do from a powerchair.
    [This Message was Edited on 09/16/2008]
  20. lurkernomore

    lurkernomore New Member

    Now come on, don't be embarassed, lol. Look at the huuuuge boo boo I just made! ;) I wonder if we all just gave up our inhibitions and worry about the fibro fog and started speaking *Fibroese* if we wouldn't all be healthier for it?

    ***Now I have to tell you that I had to go back and correct about 50% of the spelling on this. And it probably still has typos, but hey, I tried.*** (Giggle)