Welcome Jeet Kunedo302

Discussion in 'Fibromyalgia Main Forum' started by teach6, May 31, 2003.

  1. teach6

    teach6 New Member

    I was just reading the old post you answered. I am sorry to hear your family is not understanding and supportive of your illness. I think it takes a lot of time and patience for family and friends to understand that we are ill and not getting better.

    Today I went to an event at my church. I knew I would need to be on my feet a lot, so I decided to use my scooter when I went. One of my good friends came up and asked if I had a setback because I was using the scooter. I told her that I was about the same as always and that I always use my scooter, or the ones in stores when I am out. I simply cannot walk or even stand for more than a few minutes at a time.

    I was really surprised by her reaction, but I realize that she had never seen me on my scooter. Most of my close friends have, or at least are aware I use it.

    It has taken my own family varying amounts of time to accept my disabilities. My 24 year marriage ended in part because my ex-husband did not believe that I was physically ill. At that time neither did my doctors.

    My adult children have accepted it in varying degrees. My middle son lives with me and sees me day in and day out. He knows I must rest every day and that I will not go anywhere that requires walking more than about 50 feet without my scooter. He is not totally supportive, but has come a long way over the past year and a half.

    My older son and his wife realize I have limitations, but really not the whole extent of them. My daughter would like to pretend everything is OK and just go on with her life.

    It is difficult enough for us to accept our illnesses, let alone for our families. After all, we look OK, how can we not feel OK? Be patient with your family and try to focus on what you are still able to do, rather than what you no longer can do. That has made a huge difference for me and my acceptance and adaptation to my dx's.

    By the way, I received that advice from a dear friend who has MS and now has only the partial use of one hand. She is virtually bedridden and needs assistance for everything she does. Yet, despite this she always has a smile and something positive to say.

    Barbara
  2. teach6

    teach6 New Member

    Bumping....

    Barbara
  3. Shirl

    Shirl New Member

    I sure admire you for you acceptance of this illness, and the wonderful way you cope with family and friends. YOu must have come a long way to get to your current attitude.


    I also have leaned to deal with this illness and quit fighting it, I also rest often, and don't go where I can't deal with things anymore. I also simply removed the people that are toxic to me out of my world.

    I would love to start going to church again, but its the seats (pews, hardwood no pads) that stop me as well as the morning fog. By the time I am fully awake, the sermon would be over with.

    I don't have a problem with legs and hips, its my upper back that is the major problem. I have thought and thought how to over come this, but I can't seem to get something to work for me.

    No one would know me in this area (I am still considered 'new'and have been here nine years), and of course my limitations would be a shocking revelation to these country people who seem to be more healthy in their eighties than most are in their thirties in the real world!

    I could imagine trying to explain that the pews are too hard for me to sit on for an hour without getting up and stretching :) Plus they are not big on a/c either and I can't handle heat.

    You are encouraging, and I just might give it a try. You truly are an inspiration lady.

    My children are not a problem, it took my daughter a few years to get 'the message', she simply thought that I was tired of 'committments' and was using the headaches, IBS, and the pain as an excuse not to be pressured into commmitting myself to things she thought I was just tired of doing. She finally came around and is a great supporter of me and FM now.

    She even hands out the flyers from the board at her job for us and any of her customers that have FM/CFS she will give them the website here for support .

    She took me shopping today, and she has learned that I cannot handle the large stores (Wal-Mart), large Mall's, etc.
    So we shop at smaller stores and regular groceries. That I can handle without a problem. She will ask if I feel like driving a distance to shop or do I just want to stay in the area closest to home. She also carries in purchases, but I refuse to have her put them away too.

    I simply take a nap after she leaves then I can handle that part.

    But for the longest time she, I think did not want to admit that this tough, do everything for you and your friends Mom was really sick! Now she knows and has adjusted herself to my way of doing things when we are out together.

    My husband is doing well with it too, we have been married for 30 years, and he also was always depended on me for everything to cooking, washing, going out doing my own shopping etc. Now he does most things for himself, he even cooks for me now.

    He works for an oil company so is gone for weeks and sometimes months at a time. But when he is in, then we plan out what we can do (around how I feel), and he does not push me anymore to go beyond my strength.

    My sons I don't see too often, but the oldest does do my yard work and whatever else I need done when my husband is gone. So its finally working out fairly well!

    None of this happened overnight, but I can tell anyone, it has to start with YOU, You have to make the decision that you are not going to keep causing yourself pain to accommadate others.
    I had to learn this, if its not done exactly like I would do it, well thats life, and I learned to live with others helping me, before I wanted everything done just 'so'!

    Thanks again for your great post. I do hope you get much better soon...................

    Shalom, Shirl




  4. teach6

    teach6 New Member

    Bumping again!

    Barbara