Faith, Love and Understanding = Compassion??

Discussion in 'Caregivers' started by faithforher, May 14, 2002.

  1. faithforher

    faithforher New Member

    Hi there,
    My soulmate has not yet been formally diagnosed with FM. She is still going thru the motions with her doctor, neurologist and physical therapist to eliminate other possible causes for her pain, depression, sleepless nights, headaches, bladder problems, stomach cramps and so much more. She had an MRI of the neck area last week and her neurologist could find nothing. Her doctor has been very helpful in precribing her pain meds not to mention all the other meds he has been trying on her. She has progressed into this DD quite rapidly in the last 4-5 months. She was in a car accident last year and that is when it all started. The doc started her on Prednisone last week and she is taking some anti-depressants too. He now has her on Neronotin( I don't think that is spelled right) too. She has been taking Ambien to sleep but they cost so much that we can't afford them all the time. She has scoliosis in her upper back and that is where most of the knots have been forming in her muscles. Although, her back pain has moved to the lower back this past week or so.
    She now has to keep a box with all her pills split out for each day cause she has been getting very forgetful("Fibro Fog" maybe)lately.

    I am so very worried that this western medicine approach with all the pills may be causing some of the symptons she is having. I am so frustrated because she is great one day and then gets terribly crabby and withdrawn the next! She will feel good one day and do laundry or clean house but then she can hardly function the next day!! I asked her to try Noni but she is unwilling to stop all the meds right now. I love her with all my heart and I am trying so hard to be understanding and to have faith that she will have a better quality of life someday. I spend many hours each week becoming more knowledgable of this DD. I have been telling her and myself to just try and go one day at a time!! We have been close friends for years and only recently(4 months ago) took our relationship to this upper level. It has been really hard sometimes. I almost gave up several times when she would tell me "Leave me alone!!". I was terrible about understanding her mood swings but am getting better.

    She is very beautiful and from just looking at her you wouldn't even know that she is in severe pain all the time. She does such a great job at hiding it from most people. Sorry to ramble on like this but I have been reading many posts from this site and The Wall and I felt that I needed to get some of this stuff out of my mind and just say it. Sometimes I wish I could just feel her pain and other symptons for awhile so that I could learn to be more empathic.

    Sometimes when she is mad she will tell me "You don't have to be here". She is right; we are not married and have not committted loyalty to each other. It would be easy to just walk away right now. I'm still here!!!!!!!!!!!!!!
  2. annee

    annee New Member

    Who said in life .....we must choose the easy paths.
    Life is so much more rewarding to be connected and care and be in love.
    Of course it's tough, being in love is tough going sometimes - sick or not.
    My husband GB has cfs - second time - nearly 4 years nows - first time was 20 years ago.
    We do it all together.
    GB has been there for me and given me immense strength when I needed it.
    And I am there for him 'whenever he needs me'.(good name for a song!!:)
    How lucky you are to have found your soulmate.
    Just be there for each other.
    I hope the health of your 'soulmate'improves.
    It ain't easy being a carer - worse being sick.
    But love makes the world go around, and we go along for the ride!!!!!!!!!!!!!!!
  3. memom

    memom New Member

    Hi, again. It seems like your soulmate is doing what all of us fibromites have done and will continue to do sometimes -- when she has a "good" day, she does way too much and then the "payback" for exceeding her limitations is severe and absolute. It's hard not to exceed limitations, but try to only do it for fun things. Then the "payback" is at least buffered because of the good time had. Do one load of laundry at a time; although it's very hard to resist the temptation to put in that second load when you put the first into the dryer. Also, I've found that a lot of things, like folding the towels a certain way, are no longer important. just so they get into the cabinet in some reasonable fashion. Also, wearing and washing and wearing the same five or so outfits, that allow for interchanging differnet tops to go with differnant pants, etc., works well, although it may seem boring. Also, wear clothes of similar colors, so you can decrease the number of loads -- red socks, underwear and a shirt mean an extra load for the reds, so forget red unless you go with a lot of reads and then forget other white-ish colors or dark colors. You can work it down to four loads per week: two for clothes, one for sheets, and one for towels. Put any clothes that don't work in your clothing loads with the towels or sheets, if the colors work together. AND YOU MUST LEARN TO HELP DO AS MANY HOUSEHOLD CHORES AS POSSIBLE, and try to do it "her way" just so she doesn't feel stressed/upset about not being able to do it herself. After a while, you can do it your way and she won't mind, she'll just be grateful it's getting done. Good luck wrestling with all the limitations -- it's been the hardest part for me. I want to do everything I could do 10 years ago, but it's impossible -- but it still pisses me off. Barbara (Yes, the same one with the prior long message.)
  4. memom

    memom New Member

    Hi, from Barbara. I spent about 1 1/2 hours replying to your message, even giving advice re medications, doctors, exercise, etc., but it is not posted !!! Anyway, the bottom line of my messsage was this: it is HER ILLNESS and she needs to be the one managing it, and YOU NEED TO LEARN TO COPE WITH THE LIMITATIONS HER ILLNESS WILL HAVE ON YOU AND YOUR RELATIONSHIP AND HER. Best wishes, Barbara