if I knew then what I know now...

Discussion in 'Fibromyalgia Main Forum' started by nan2dance, Feb 1, 2006.

  1. nan2dance

    nan2dance New Member

    If I knew then what I know now...

    *I would have rested more in the acute stages. It was only later that I read about "ART: Aggressive Rest Therapy!". Even then it made a huge difference in dealing and healing.

    *I would have asked for help sooner. Now I see how sick I was and what a grace it was to finally get a volunteer shopper from the local university, get a visiting nurse to bathe me, get massage and acupuncture, have family feed me and help out with housework, get a wheelchair from a church who heard about me, get a wheelchair from the government, get a cane.

    *I would have sought therapy sooner. Someone I could tell the truth to, the whole truth and not have to worry about the burden I was causing.

    *Anyone care to add on here?

  2. WoodstocksMusic

    WoodstocksMusic New Member

    Your ART (Aggressive Rest Therapy) I think is tremendous... I certainly feel that if I had not tried to push on and just shut down and rested for a month or two I might have avoided my 2 years in bed, when I finally crashed and burned completely to the ground.... but then I WAS super woman you know and a super woman cannot let a little thing like achy painful bones and a few sleepless nights stop her!
  3. Dee50

    Dee50 New Member

    And that's the truth :) Rest, water and NO chores or pushing past the point of no return.
    Dee50
  4. pirtpain

    pirtpain New Member

    BOY, WHAT A THOUGHT. I was fortunate when I got ill that a co-worker walked me through what steps to take to get me the time off with this DD. First of all, I talked with the Human Resource Dept. at my job, to start receiving State Disablity as soon as possible. This co-worker had just gone

    out on disablity so she coached me on my rights as an employee and it ended up that I had to bring this up to my employer, they didn't offer advice to me on how to get paid for any of this time off. I blame the company for working me to the bone the 7+ yrs. that I worked there. It still

    burns me up because I gave so much to them. I wish I could have been given some lieniency frm my JERK BOSS so that MAYBE I would have been able to prevent this disease of being triggered in the first place!!! Sorry..I get so ticked off about that, didn't mean to go off like this.

    ANYWAY, as I got disablity for the first 6 months or so, I was able to get all of my sick pay & vacation pay also. The company did pay me 1 week's pay for every yr. I worked for them, it was policy. I waited 3 or 4yrs before I ever got any SS. First of all I was told that EVERYONE GETS TURNED

    DOWN THE FIRST TIME BY Social Security. I did have a lawyer that specialized in SS, but I followed up constantly to push him on the appeal. In the meantime I lost my dream house & alot of my old friends and the great staff I had as a manager. I am still very BURNED about the whole thing.

    But, I don't know if the rest really helped. 11 yrs. later I am still in bed the majority of the time, still suffer in pain, and continue to gain excessive weight. I tried taking 3 wks. or so off & felt as if resting would take care of it. When I went back I was just as exhausted after I took

    the time off. Unfortunitly do any of the fibro. patients ever feel better after resting completely??? I also do a chore, rest for a few minutes and then try again. I think this is the only way to keep life going, but additional help is always welcomed. You have someone to bathe you? Do you just have FM or do you also have CFS??

    PIRT




    [This Message was Edited on 02/01/2006]
  5. mikewaz

    mikewaz New Member

    I would have never thought this was a bad flu that I should just fight thru and keep working.

    I would have never beleived MD's that said there is no such thing as FM

    I would have never taken 6 months worth of antibiotics, prozac, sleep meds, vioxx, ultracet, mood stabilizers, depakote etc etc

    I would have listened to my body and realized that my gut was infested with candida and that what I felt wasnt normal
  6. MKlady

    MKlady New Member

    Wouldn't have labeled it "depression", "just tired", "post-partum depression", "just tired", "depression", "aging" (I'm only 54!), "low energy", "overdoing it," "stress," etc., etc., etc. Don't you just love DENIAL! For 30 years????

    Wouldn't have let the rheumatologist get away with "unknown virus, you'll get over it" when I had my worst acute phase 4-1/2 years ago.

    Wouldn't have let the rheumy last sping get away with "fibro with fatigue" instead of "chronic fatigue syndrome" and just giving me NSAIDs and physical therapy (which made fatigue worse)!!

    Would have found this board years earlier so I could get some REAL help. Thanks soooooo much!!


    [This Message was Edited on 02/01/2006]
  7. WoodstocksMusic

    WoodstocksMusic New Member

  8. nan2dance

    nan2dance New Member

    Thoughts on your posts:

    1. Throughout this illness I have been single and have no children. I can't begin to imagine dealing with this thing while having responsibilities to other people. How people stay in loving relationships and properly take care of kids is beyond me. This is a selfish illness, from all I can tell. It demands attention and rest all the time. And that seems like the only way you make progress too. I do have a loving family and I try to help out as best I can. But God bless those of you out there being good parents and couples!

    2. Yeah. Money. The way I see it, the only way not to loose money with this illness is to already be independently wealthy. I did TDI (temporary disability), and then got social security disability a couple years later. I only have myself to take care of. I tried going back to work part-time a couple times. "Stretching the envelope" I call it. But it's still not smart long-term. I'm at the point I truly believe I'll be able to support myself in the not-so-distant future. There were some positive things about working part-time. But when I put things in the balance I realized it was actually holding back my progress. When I first left work, I had no choice - I couldn't even walk up the front steps to the office! It never occured to me that my employer would "make" me stay. Since then I've tried working again and then decided it wasn't worth it. So long as I'm able I'm striving for full independence. Yes, I'm poor. But if I were working part-time I'd be both poor and sick for the rest of my life. So it's exercise and good eating 100% right now. When I have to explain to family and acquaintances what I'm doing right now I say I'm focusing on my "physical therapy". They seem to respect that. I'm hoping the poverty is short-term!

    3. ART. Yeah, what a relief. It's a concept and a darned useful one at that. "What are you doing lying in bed all day?!" "ART." Ha!

    Okay, so I was hoping this thread would be useful to people, especially those who are new to this situation. What wisdom can we impart? I'll add acouple more to the list.

    If I knew then what I know now...

    * I would recognize that 6 months with the "flu" is NOT normal and is NOT a flu, howevermuch I might want it to be. Admit something's wrong and get help!

    * once I would know something was really wrong, I'd ask someone to be my financial advocate. I'd get someone I knew and trusted to help discover and sort out the financial "options" for me. ie., I didn't know Temporary Disability Insurance (TDI) even existed until I had been out of work sick for several months! Duh! The office secretary just happened to mention it. When you're really sick you need someone to, honestly, do the thinking for you.

    * I'd have hired a lawyer who specializes in social security disability cases right from the start. Don't wait until you've muddled through all those phone calls and forms, rejections and interviews for years. Get a lawyer from the start. The percentage my guy took for the service (only if you win) would have been well worth saving me all that mess when I was sooo sick. Geez, what a time to be filling out questionnaires and writing essays!!!

    ~long-winded nan2dance