Sometimes the Roller Coaster Ride is harder than the illness

Discussion in 'Fibromyalgia Main Forum' started by IngyW68, Aug 21, 2003.

  1. IngyW68

    IngyW68 New Member

    Hi everyone,

    I have had FM/CFS for 8 years now and it has definitely been a roller coaster ride! I got married 3 years ago to a wonderful man who tries to understand me. It seems like he remembers that I am sick when I am in the middle of a crash and crying my eyes out and can't do another thing.

    Does anyone else have family members like this? I also seem to ride the wave of feeling good by doing everything I possibly can and wanting to show my husband that I am still a fun person to be around and am not totally useless around the house. So, on a good day I clean the house, do the laundry, fix dinner, take care of my sick dog, run errands for my 94 year old dying aunt, help with my youth group every Sunday night at our church, help run a golf tournament through our church that is coming up in a few weeks, work part time at my husbands office, try to have "nooky" with the hubby as often as possible, go for bike rides or walk around all day at a fair, etc........

    THis is only a small list of things that I try to hold as well as us trying to have a baby:) I guess during this time I try and forget I am sick and in tremendous pain and then everyone else forgets as well and then I crash and then have to cancel things or not get things done around the house and I feel really guilty.

    I miss the person I used to be before this disease. You think after 8 years I would get used to it but when I have a good month or so, I forget, or put it out of my mind.

    Sorry to ramble on, I was just wondering if anyone else feels this way and what you do to cope. I just printed out a information sheet for my husband that talks about what to do when I'm not feeling well. He read it but then I think after a day or two it escapes his mind. Not from lack of love but lack of actually having to walk in my shoes each day.

    THanks for listening today, it's just one of those lonely days

  2. wle

    wle New Member

    we ever get used to it. I had a wonderful few days last week and weekend. Over did - knew I was - but didn't care as I felt sooooooooo good and hadn't felt good in so long. Now I am paying for it. Have a pain up the side of my neck the is KILLING me and and achy all over and so tired. I work full time and try to take care of our 1 acre yard as hubby works such long hrs. To top it all off, hubby is much younger than me and although he is very understanding I don't want him to realize he has married "an old woman" so I like you always do more than I am really able to do. Some days I have to force one foot in front of the other just to walk - or hobble if legs and feet are what is bothering me on that day................will we ever learn? WLE
  3. IgotYou

    IgotYou New Member

    I'm naturally a type A, but I've been sick long enough that my husband doesn't really remember how I used to be so he doesn't believe that. Anyway, I understand the pressure of wanting to be the wife your husband married and still be fun. I put myself through the ringer over that. I guess I've done a good job of it because when I'm having a bad day he thinks it's all in my head because I did just fine yesterday. He's a good man and I have no doubts he totally loves me, but he doesn't understand and I have come to believe he never will. We know we have a hard time losing the person we used to be, so it shouldn't be too hard to understand how our husbands feel about it. Mine needs a lot of touching, and I've learned to give him what he needs even when I really don't feel like being anywhere near another human being and hide how I feel. I think it's bad enough that I have to be miserable - no need for him to be, too. Also, I find that getting up off the couch is the hardest part. Once I start doing things I'm OK, so I push myself all day, and then crash hard at night. The only time I really lose it is when he keeps me up late! I also know that I'm harder on myself than anyone else is, and just can't come to terms with this whole thing. I don't want it and I don't want to let it ruin my life. So I get very upset when I have to rest or baby myself. These past few weeks have been the most depressing so far because I've been so darned sick and tired that I can't hide it, and I'm not getting a lot of understanding at home. So, yes, I can relate.
  4. Sunshyne1027

    Sunshyne1027 New Member

    I was just explaining to someone its more like a yo-yo. Up and down, all around, hoping to hit ground and find a balance with it all one day. Truly understand.
  5. pixipip

    pixipip New Member

    I'm always saying I wish this DD would just stay still for a minute so I can get usedto having it and plan some sort of life around it, but up and down and side to side I go!
    Feeling seasick,