August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

wiped out with exhaustion and pain

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by hurtingallthetimet, Apr 25, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

    its a pretty day, not crazy weather, kinda warm but not real bad and i am dead tired, been in bed for several hours but in so much pain couldnt sleep but so exhausted feel like i cant make it.
    these illness are so strange...not really sure what caused this to be so bad today...

    i was thinking of part time work again been on my mind alot...but im so scared...not sure what if anything id be useful at and the way i feel not sure what i could do...if just getting up exhausted me waht would working do? just feel like i might be setting myself up for faliure...but cant stop dreaming...would love ot help kids more...

    just needed to vent yet again...feel like im always complainng..but i have no one else to talk to and it helps to vent...
  2. judi


    Winfield, Illinois
    I think it's good that you can post that here. not too many people can truly understand what it's like to want to live and not have the energy to do so. I'm wiped out today as well and it's frustrating, but I always tell myself tomorrow is gonna be great. So now I'll tell you the same "tomorrow is going to be a great day for you"

    be well
    *GG* likes this.
  3. SickOfSickness

    SickOfSickness Senior Member

    I know the feeling :(

    Good post Judi.
    *GG* likes this.
  4. ukxmrv

    ukxmrv Senior Member

    Do you need to be back at part time work?

    The impression that I get from your posts is that you would be a conscientious and committed employee who always wants to do her best. It may be that an environment where you are expected to perform and unable to do so as you wish could be a terrible burden on you.

    There will be days like today full of pain and weakness (physical) where no amount of positive thinking, drugs or personal strength can get you to work and able to do the job you want to do. That's a very hard thing to come to terms with.

    Could you maybe instead plan more outings with enjoyable activities and hobbies to enrich your life and make some better friends for the good days when you are able to get out of the home or at least potter around in?
    taniaaust1 likes this.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I know you are just venting (which is good at times) and dreaming about the things you'd like to do.

    but seriously thinking about working in anyway sounds like right now, it just wouldnt be good for you. Gotta try to stabilise where you are now and then learn to "walk" again before you can "run" eg run=start working again.

    It may be more helpful to try to better your life in the ways which are more likely possible for you to do and things which will help your happiness and hence start to give you a better life then you have now.

    Tiny steps.. and backing off more if things are giving you more pain and exhaustion.

    You seem to still need to find the ground of where you are now and what is right for you now, before trying to move forward more.

    Dwelling on things we cant really do, often isnt too helpful thou we all do do this at times.

    In your posts it clearly stands out how much you love your child(ren) ..this subject always comes up for you....

    If you look after YOURSELF well (which isnt a pushing yourself to work thing), you may improve enough to be better with them and able to take them for walks better etc etc.

    It is possible given with enough time and enough resting and looking after yourself, that things like your mophine could be cut down on (improvement rarely happens overnight).

    At the moment you are having to use a heap of "crutches" eg the morphine etc, just to survive, just to get throu the basics of life. It would be a distaster sending yourself off to work in the state you are currently in.

    All the best.
  6. Valentijn

    Valentijn Senior Member

    This is almost certainly post-exertional malaise. You keep pushing and pushing yourself and you are running yourself into the ground. You need to learn how to pace yourself - this is a lot different than healthy people pacing themselves. It means that you need to avoid doing things that cause symptoms. Even pushing yourself a little bit eventually adds up and there is another crash.

    It's good to dream and to keep that as a goal, but it's important to realize your current limitations and the effect that your current behavior is having on your life. You keep making yourself sicker, and you cannot heal while you are doing this - and you CAN keep getting worse if you persist. I miss doing volunteer work too, and chatting with my co-workers and feeling productive ... but I know (from experience) that if I try to go despite my limitations I'll keep getting worse. And then I won't even be able to do very basic things like cook an easy dinner, brush my teeth, or walk up a single flight of stairs.

    We need to choose our battles very carefully, because the results are catastrophic if we keep fighting battles we cannot win. You have a serious physical illness that is highly debilitating and it can get worse if you are not careful. You need to start thinking and acting like a disabled person. If you didn't have any legs you wouldn't be trying to win a marathon, but that is pretty much what you're trying to do by carrying on with life as if you should be able to do the same things you could do before.

    Most muscle and joint pain will go away if you don't push your limits. Just like normal pain, the pain we get with ME is warning us to stop doing something, and crashes can be avoided by paying attention to it. Headache pain that isn't touched by aspirin, etc, will often respond to 2-3 grams of fish oil after taking it for a day or so - I take it daily so I don't have to wait for it start working when I do get the headache. N-acetylcysteine (NAC) might help prevent your brain running around in circles when you do wake up.

    I had trouble sleeping too, but pacing, hydroxy-B12, fish oil, and NAC have resolved that problem for me.
    taniaaust1 and Googsta like this.
  7. Googsta

    Googsta Doing Well

    Some really lovely posts on this thread :Retro wink:

    This is a site I find helps me alot.

    SCROLL down, on the left side their are numerous sections on Coping, Family Issues etc
    The articles are informative & also funny at times too.

    I hope they help you as they have me :)

See more popular forum discussions.

Share This Page