How do you deal with the hopelessness?

Discussion in 'Fibromyalgia Main Forum' started by kaths, Aug 11, 2003.

  1. kaths

    kaths New Member

    On my rare good days, I try to go places with my husband as far as my energy envelope will allow. No matter how careful I am, I always crash the next day and for days afterward. It feels hopeless. Although I chart my symptoms, I never know when a killer migraine (worse than my normal daily migraine), nausea, back pain or bone-crushing fatigue will fell me and the depression will deepen farther down into the pits. I take Wellbutron SR, Trileptal and Neurontin

    I rest horizontally every afternoon until my immune system turns off and I start to feel better. Although I know I won't feel this good when I wake up in the morning, I do go to bed by 11 p.m. I eat healthfully, take supplements, exercise, see a therapist. But a bad day puts me back into hopelessness. How do you all cope?

    [This Message was Edited on 08/11/2003]
  2. Shirl

    Shirl New Member

    Life with FM/CFS is not an easy road to travel. I could have written your post a few years ago.

    What I did was come to terms with my life as it really is. I have accepted what I can do, and enjoy it while I can. If I go out today, and crash for two days afterwards, then I simply accept that, and think of the good time I did have.

    I make the crash as pleasant as I can, I get in my soft confortable bed, watch the tv, or read a good book till the tiredness and the pain subsides.

    I have learned to look forward to the crash, as I know its usually going to come depending on how much of my precious energy I used up with an event or a project!

    But lately, I make a point of not doing anything to totally exaust myself, even when I can go another hour or two, I quit while I am still not feeling so tired. That way I usually get a goodnights sleep and do not crash the following day.

    I have been working on how to live with this illness for a few years now, before then I would go, go, go till I dropped. But not anymore.

    I hope you find a routine that will help you too. Its really a decision to change your whole lifestyle. Its not easy and sometimes we all screw up.

    I did that last week, and paid for it with a pulled muscle that put me down for almost an entire week. It was not the FM, but pain that was just as bad and made me just as miserable, all because I did not want to stop and space out the job I was into, or wait for someone to come help me!

    Take care........................

    Shalom, Shirl

  3. hollie9

    hollie9 New Member

    When I feel like this I just try to be good to myself, make myself comfortable and think...This too shall pass.

    I don't know how long you've been ill but for me it was much worse in the first 2 years then got quite a bit better. I still have some relapses when I feel like you do and I just try to remember the prior relapses that I overcame and how I have felt better even will CFS.

    Doxepin (a tricyclic antidepressant) helped a lot during my bad first 2 years. Although I took it for sleep it did have an antidepressant effect.

    I still can't keep up with my husband and I don't think it's a good idea to try. The pressure and stress of trying to keep up makes me sicker.

  4. kaths

    kaths New Member

    Thanks, ladies. Anyone else?
  5. Gran9

    Gran9 New Member

    I read somewhere (darn if I can remember where) that "no situation is hopeless; hopelessness is a HUMAN response to a situation". I"ve struggled with CFS for 3 1/2 years and since there is no clear-cut cure, I have spent a great deal of time learning how to deal with it.
    (1) I never push myself to the point of a crash even if it means staying home and prone most of the time. A wedding or graduation or funeral means I'm going to be in the bed for 3 days. I accept that.
    (2) Good books and music I enjoy; rented movies are a must. I reserve these things thru my local library and my husband picks them up for me. Most libraries have a homebound program where they will deliver items also. Be good to yourself in little ways and don't kick yourself for being ill - it's not your fault.
    (3) Every morning I start my day with a devotional and a gratitude journal. Write down 5 things daily that you are grateful for. This helps you focus on the good thing in you life and takes the emphasis off the illness.
    There is hope... there are many success stories floating around on this board and I know that I will be one of them someday. And I hope you are too.
  6. wle

    wle New Member

    I actually think that I am on the upswing (and am just starting treatment). Thinking back I can remember crying every day, several times a day because I felt so bad and so tired and didn't know why. Then there would be periods that I would feel better....not good but that I know what is wrong I am not as stressed out over it. I know what my limits are and I usually do not go overboard. When my husband runs around on weekends to the home improvement and hardwared stores and wants me to go with him I usually do, but I take a book and sit in the truck, or I'll go into the garden section and look around while he shops for his items. Since I never did like to shop much, it is not something I miss. Also since starting on the amitriptolien (sp wrong I am sure) I am feeling less achy and a little less tired - only been taking it for a week. So am hoping for even better results. You sound very depressed - perhaps your meds are working against you instead of for you. Have you spoken to your Dr. about this? There may be a better mix of meds for you. I wish you better days ahead. Hugs WLE
  7. Echo2

    Echo2 New Member

    The best thing for me has been to become really educated, educate my husband and family, doctor, pharmacist, etc. I am NOT going to go down into "hopelessness" without a fight. Does it still happen? You bet. I have days where I really look forward to being a spirit being, days where I cry and feel bad. As others have said, this too shall pass. I am making lifestyle changes. If I can control certain aspects, it makes the others easier to bear. At least I feel like there is something to do besides suffer. This board is a godsend. You can vent here, let go of your feelings, and only get sympathy and support back. I had been feeling so guilty (I bet you have days like that, too) and asking for help here made all the difference. I too, go when I can and pay later. You just learn to expect it & be as comfortable as possible. I have about a million pillows :) Try some of the resources here, too. I've been really thrilled with the Trigger Point Therapy Workbook and got a theracane that works well. Don't put up with a Dr. who dismisses your pain or won't help you with it.
    Don't give up, and always remember how much worse other folks are. We are all here for you, we will pray for you and send hugs LOTS. I also do the journal & the 5 things to be grateful for each day. It helps too.
    Blessings and hugs
  8. Sunshyne1027

    Sunshyne1027 New Member

    I talk to a freind about it. Get to what it is bothering me. Sometimes cry over it. The losses. I loved shirl's post about it. Hope to get there one day too.

  9. Mikie

    Mikie Moderator

    We are far from hopeless. Many of us have actually improved, but it takes time, patience, and a complete lifestyle change. Good luck to you. BTW, go see all the suggestions under my thread for staying positive.

    Love, Mikie