um i need to speak up here

Discussion in 'Fibromyalgia Main Forum' started by smiffy79, Mar 3, 2006.

  1. smiffy79

    smiffy79 New Member

    ok we all hurt here right? and we all feel crappy? how many feel we have little to no control over their lives or lifestyles?

    i know i felt like that but fibro/me are just imposters on our lives.
    ok the saying keep your friends close and your enemys closer means basically we learn all about our enemy and then the saying knowledge is power?

    by learning about each different symptom and working on them one at a time, its got to be like shedding a mouldy blanket and taking back your life.
    im not talking about denouncing the fm or pretending it isnt there but im saying it can be a giant overwhelming parasite and so by taking out each of its heads one at a time will weaken it.

    so what if my one mammoth task this week was washing my nets and cleaning the windows i did it by pacing myself, if slow but sure the symptoms are weakened and still by pacing could we not still reach for the stars? maybe we would have to reach a bit slower but they are still there.

    its our life not 'its' and we should still live it and be in control.
  2. tngirl

    tngirl New Member

    to see a post like this one.

    Yes we all hurt and feel crappy and feel out of control sometimes.

    But, I haven't given up the fight yet! Knowledge IS power.

  3. Jgavi

    Jgavi New Member

    I assume you think more people should try harder and different ways to work WITH the pain and not agaisnt it!?

    I agree!


  4. kjfms

    kjfms Member thoughts as well... :)


  5. gramaT

    gramaT New Member

    Good post, I agree wholeheartedly!!
  6. littlebrownwren

    littlebrownwren New Member

    I was at the doctors office yesterday and while waiting picked up a magazine and started flipping through the pages .
    An article caught my eye.
    Seems this lady had a lot of health problems and was just like us. She was fed up with her disability but one day quite by accident she did a small chore and realized it only took 5 minutes to do it.

    From there she began to plan 5 minute projects and was surprised at what she was able to do.

    So now I have some 5, 10 and 15 minute projects planned.

  7. cozykitten

    cozykitten New Member

    I like the 5 minute project plan! I look at my house, the mess, the dirt, the chores, the list.....hack! Instead of focusing on everything, just focus on 1 small thing. It's kinda like....How do you eat an elephant? One bite at a time. hehe! I'm so smart. ;o)
  8. smiffy79

    smiffy79 New Member

    thank goodness, i was afraid i hadnt put what i felt into words adquetly.

    i like the elephant, i call fm and m.e my many headed beast which is where i was coming from with the one head at a time.
    but yes one step at a time and this illness can be put firmly in its place.
  9. Suzan

    Suzan New Member

    Yes, there are still days where I do little because fibro has big hold that day, but most of my days...even though I may be only doing 1/10th of what I used to do..I DO keep DOING! My house is always reasonably clean, not because I can clean all day..but because every day I do something. My pantry is full, and dinners are made...not because I can run and pick things up from the store on a whim...but because I can always have enough on hand to create a meal. I stock up on EVERYTHING when I do feel good enough to go shopping. I think that even though I still have times I have my pity parties...and the losses of my past life..and a lot of my social life are real....I have a positive attitude..and I do what I can to keep MY life going...and still try to get some joy out of every day!

    I used to do decorative funiture painting and wall murals...I cannot handle that I started painting on canvas...It is STILL paint and brushes..and STILL brings joy!
  10. bpmwriter

    bpmwriter New Member

    i'm glad you posted this. i've been living with my mother for 2 years now, running in circles, looking for answers and relief and waiting for the day when i'll be better so i can get back to my life. slowly i've started to adjust my expectations and redefine "better." 100% recovery would be nice but it's not essential. i can still live a full life and regain my independence. my life might look a lot different than it did before, but that's not such a bad thing. all i need is a tiny little place with a tiny little stress-free job, a couple close friends and my cat to snuggle with. writing makes me happy. so does spending time in nature. these things are better antidotes than all the supplements and pills in the world. as for new levels of wellness, i believe it's like love; the greatest gains are seen when we stop looking so hard.

  11. zerped

    zerped New Member

    Thanks for the post; I need a reminder like this everyday!

    And excellent suggestion ...wren. I've given up trying to find a time where I feel OK doing my 20 minutes of daily exercise. I now do one exercise (15 reps) three times a day. It's about the same amount of time as the really long commercial breaks at halftime on the soccer games I watch. When I can do all three sets in a row, then I'll add a new exercise.

    Devious and determined beats brutish and bold every time!! :eek:)
  12. Mikie

    Mikie Moderator

    We go through the grieving stages of denial, anger, and/or depression on our way to acceptance. Once we are in acceptance, we are free to use our energy to heal and not to beat ourselves up over what we cannot do.

    I love the analogy of the beast with many heads.

    I use an analogy of terrorists in my body and I fight them on as many fronts and with as many weapons as I can. I'm making headway but it is slow.

    Love, Mikie
  13. smiffy79

    smiffy79 New Member

    you get me too.... i am on my knees oh great one :)
  14. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    and I have a 2 yr plan taht makes me feel optimistic and empowered.

    I feel saddened by people dwelling on their former lifestyles and how people don't understand them. I've moved on from that, thank goodness, spending so much time "there" myself was just wasted and giving more power to this disease. And what is this disease anyway? We call it a monster, but it's just a collection of viruses and bacteria, w/ a few faulty genes thrown in. We are the lifeforce, we have the power really.

  15. smiffy79

    smiffy79 New Member

    thats exactly right. we are not who we once were but for me thats a good thing. we can still play its just with different rules thats all.
  16. smiffy79

    smiffy79 New Member

    on the control thread. i really do believe that the two threads go hand in hand.

    if you can get a good balance in meds/food and life then we can find a balance between controlling some of the fm and still remaining operational.

    i dont have everyday running through my house cleaning and then go walk the dogs and come home to play supermum but by splitting the chores over the week, walking the dogs on a short lead walk in the morning and driving them to a secure area for off lead runs and my hub jogging with them in the evenings they get good excercise.
    my hub helps me out by doing most of the cooking and collecting our kids after school. he knows that if he wants to have a conversation with his wife at the end of the day instead of sitting in the living room alone he has to pull his finger out and help.

    i have found a good balance for me but its sooo easy to upset that balance but all it takes is some common sence and over the week you can get back into routine. if there are days you know you are not going to be able to sweep the floor and pick up the dust with the dust pan then just drive the vaccy through to the kitchen instead.
    find different ways of doing things but there is nothing wrong with telling the dust it will just have to wait.

    experiment. whats the worst that can happen? you will ache and be in pain? well your in pain now arnt you? just by washing up or bunging a load on you will be in no more and no less pain but it will be another job out the way.

    yes of course i know that to shove yourself around all day forcing yourself to go go go you will soon be in hospital im not suggesting that,im talking about balance.

    you can empower yourself and so feel happier.even if your extra thing after washing up is to put make up on just build on what you achieved today.

    wow, sorry about the length :([This Message was Edited on 03/12/2006]
  17. i so agree with what you have said.its our life not " its " and yes we should still be in control,by pacing ourselves.i think at times its the daily pain that wears us down,i know this to be true in my own case.
    i like that i can gain control over the fibro in as i can make my legs walk through the pain,still go out doors walking,breathing in the fresh air.but as you all know,the daily pain wears us down so.i just dont feel that i can cope any longer with the pain.i use a pain relieving gel,but im having to cover my whole body with it,just to move about and fit into normal so sick of it all just now.but on a good note,im not giving in,i think im just feeling sorry for myself today..and those who know me, know that its very rare that i feel sorry for MYSELF.

    kind regards
  18. Mikie

    Mikie Moderator

    Once we stop grieving what we cannot control and realize what we can control, we can work on those areas we control. Knowing the difference is the trick.

    Everyone needs to vent now and then; it's healthy but if we complain every day because we are tired or sick or somebody doesn't understand us, it just sucks the energy out of us, energy we might be using to heal. It also sucks the energy out of those around us.

    The people here who have improved are the ones with a fighting spirit and a plan. They are also the ones with strength and flexibility. If one thing doesn't work, something else may. Even on their darkest days they keep the faith and know things will get better.

    Here's to all who fight the good fight.

    Love, Mikie
  19. smiffy79

    smiffy79 New Member

    you mention your pain relieving gel, is it something like deep heat or ibugel?

    are you only using the gel? what does your dr say about proper pain control if indeed he said anything at all?

    i found temporary relief with deep heat but i wouldnt recommend it as an only release although massage too has its benefits.
  20. its a pain relieving gel called biofreeze.its simular to deep heat.but not as cruel,in as that it doesnt burn my skin,and doesnt smell horrible.the smell from deep heat would make me feel sick to my stomach.i have psoriasis but this biofreeze doesnt agrevate my already sensitive skin.and might i say,i would never even use anything on my psoriasis unless my doctor said it was ok.its just that the pain is in the joints near the psoriasis.knees/elbows.
    my doctor doesnt want me to use pain meds,she says they dont work on fibro pain anyway,so why damage my liver.
    instead i might occasionally use paracetamol.ive been taking them 4 times a day for 1 week,and ive had to stop because i began vomiting one night,and saw blood.ive been nursing a torn ligament for a couple of weeks now,and the pain is so intense in my buttocks when i walk.
    anyway now since vomiting blood im not taking any pain relief at all,im just using the pain relieving only worry,can i keep affording to purchase more gel.its nearly £10 a tube.

    kind regards