Don't know what to use for a title to this post

Discussion in 'Fibromyalgia Main Forum' started by Jen102, Oct 25, 2005.

  1. Jen102

    Jen102 New Member

    These are just some ramblings. It seems so many are in such pain, have so little support, don't have adequate medical care, are broke because they are unable to work. The combination of all of these leads to so much sadness and sometimes bitterness and pessimism (not excluding me). Seems many are in flares now. Is it the change in the season? I am feeling more pain too. Anyway, it is sometimes hard to come to this site and hear of so many sad things which are totally beyond control and seem to have no answers. It just leaves me feeling very sad. If there were something I could do, or more hope, it would be easier.

    Please understand i am not criticizing--i am commiserating. I wish there were some answer. For me a large part of the answer is my faith. If I didn't believe I would have blessings in the future, and that I should be steadfast, it would be hard to go on.

    I am working very hard at leaving bitterness behind--not always with success--again, I am only talking about myself and not about anyone else--I am recognizing my own problems. I have been reading some posts on another listserve where someone mentioned the FFC's. Many people blasted them and said they were crooks, when they had no personal experience with them. I don't go to the FFC's but have been following with interest those who have and it seems that most have good things to say and good results. It left me feeling very discouraged. I wanted to cuss them out, but left it alone. They must have their reasons based upon their experiences for their vehemence.

    Anyway, I wish you all well--pain free days and sleep filled nights. Blessings to all of you. Jen102
  2. AnnG

    AnnG New Member

    I live in Washington State and we are having a beautiful fall. The leaves are beautiful and we haven't had the usual rain (although I hear it sprinkling outside as I write).

    My pain is my usual everyday variety, I'm not in a flare. I am having some problems with fatigue and often come home from work and take a 3 hour nap.

    I work part-time at an import store and this time is busy and crazy but the beautiful things arriving for the Holidays make each day a joy. My un-official title at work is "Christmas Captain" (given to me by my boss). I not only merchandise all Holiday depts. but I organize fun employee days to raise morale.

    I have FM, but try not to let it destroy my life. That would be giving it too much power. Sure, there are MANY times I don't have a choice, but they pass.

    Its nice to meet you, Jen. I have said it here before:

    We are FM ambasssadors. We are the face of this disease. We have to be very careful of what we put out there.

    Your comments were well-intentioned, honest and true. I pray you don't get blasted for them!

    Hugs! Ann
  3. dafoefan

    dafoefan New Member

    Even if you have supportive family, enough medical care, a loving spouse and a nice warm bed, this disease can be horrible.

    I found a horrible message board the other night, so mean and nasty. I was really surprised. I realized how lucky I was to have found this one early on. People can be very ugly to each other and I can't understand why when we are sick and need to support each other-bottomline, won't be going back to that site.

    I have a supportive spouse and although I worked most of our marriage, making more $$, he supports me now and has increased income to support the family.

    Having said that, coming here and finding out that I'm not the only one who has been just about as sick as I have been helps. My husband went with me to the dr. yesterday to tell he dr. I was as bad as I have been in the past 3 years.

    By finding out that others were feeling the same way here, I felt less frightened and also shared this with my husband and it helps him to try to understand.

    I wish everyone well, hopefully this bad phase we are in will soon pass. Pain free days to you as well and sleep filled nights.

    Take care, Lisa
  4. elsa

    elsa New Member



    Your right ... It can be difficult to read about so many people's very tough struggle to get through life with CFS/FM, but I don't let it lay me out too.

    We are here for each other ... whether the news is gut wrenching or not. It's what I signed on to do. I help when I can and sometimes all I have to offer is "I'm sorry and I'm thinking of you".

    While it might make me sad too, I'm there anyway.There may come a time when it's my turn for nightmare experiences and I'm going to need each and every one of the ones who I encouraged previously.

    For me it's about looking after each other. Many of us have such a tough time just getting the proper recognition for our illnesses ... we need to share the positive feelings when we have them in abundance. Other's might can raise there feelings with that kind of help.

    Faith for yourself is fabulous. Take that same faith and let it help you help others. The sadness is there because you are a compassionate individual. Use your faith to help you in both situations.

    I too have visited other sites. As I have mentioned previously, I am a non-posting member at a couple of them. There seems to be an overwhelming amount of negativism going on with these sites.

    Some seem to have a bit of an elitest attitude ... or purist if you will. Something as "bourgeois" as the FFC's cannot be up to par with them. What I find ironic is the majority of the FFC treatments are based on the exact same "elitest" treatment plans they tout.

    I had to laugh when I ran across a "Hate FFC" post concerning how they treat viral infections. These poor purists had no idea ... they said all the FFC is doin is stealing .. all one needs to do is heparin shots along with valtrex/famvir and Transfer Factor. For added health, they should also used whey protein.

    People don't need to pay 1000's of dollars for gosh knows what kind of treatment from the FFC when true treatment is right in front of their eyes.

    Ladies, I kid you not. I am not a patient there, but that is exactly the treatment many FFC'ers are getting for their viruses.

    OOoh, I laughed 'til I cried. One really can't pull off the elite attitude without knowing what the heck the are talking about! Ha

    Jen .. I hope you feel better soon. Rely on your faith to combat the sadness and continue to help the ones struggling. It might come a time when they will have the chance to repay your support.

    Elsa
  5. ilovecats94

    ilovecats94 New Member

    Jen

    I think a lot of it is the change in season. I was miserable for around 2 weeks, now it has calmed down some.

    Also the ones who are married have a rough time, usually as the partner who doesn't have CFS/FMS usually has a bigger load to carry. That can cause bitterness over time. I think it takes a lot of effort to keep a marriage or relationship going.

    I don't go to but one private very small MSN group. I used to visit a very large board, but they changed it and I can't post from my Mac anymore.
    I didn't know if we were allowed to say the name of sites, so I'm not going to here, but it is a very well known site that handles many different illnesses.

    I do pretty well with my family doc, but right now he doesn't take our insurance. I may have to find another doc if we decide to keep the insurance we have now for the 2006 year. I've been with one or the other of the family docs at this center for 25 years, so finding a new doc is going to be hard.

    Life is hard, but life with illnesses is even harder. Wish you pain free days/nights too. :)

    Hugs,
    Faye
    [This Message was Edited on 10/25/2005]
  6. JLH

    JLH New Member

    Jen, I ramble on and on all the time here! I post a lot after midnight, and I think I am so tired that I just sit here and type away not realizing how much I am going on and on!

    It's 12:30 a.m. now and I am hurting a lot and very fatigued; however, I put off going to bed because I know how much my body hurts to lie down on it so I stay up as long as I can--kind of like a "shop till you drop" routine!

    A lot of us have good days and bad days. Right now, I am having more than my share of bad days. In fact, it's been so long since I've had a good day, I can't remember it!! LOL

    But, I don't think you should feel sad about how poorly everyone is feeling. We just want to be able to talk about it because nobody else will listen to us!!!!! LOL

    However, I also feel sad about so many not having adequate medical care, and for those who are broke because they are unable to work. I feel so terriby blessed because I was able to work until retirement from the same company and receive both a pension and good medical insurance. Then, doubly blessed because I filed for SSDI a year after I retired and got it on my first try and now I also have Medicare. I have worked really hard for what I have, but I do feel guilty sometimes for having it--do you know what I mean?

    I don't have much family support though. I don't have any friends where I live. I only have a few family members and they all work, so I have to do everything by myself. That is extremely hard when you can only stand up and walk for about 10 minutes at a time.

    My overall health is very poor. I have a lot of major problems (see my bio for some of them). Every time I have to go to the doctor alone, I come back in tears from the shear amount of pain that I am in and an ungodly amount of exhaustion. I can barely walk into my house from my car. And, the only person at home is my husband, who doesn't comprehend, nor really care to (from what I witness), because he is overwhelmed with his own exhaustion and arthritic aches and pains.

    It is very easy for me to become depressed because I think nobody cares if I can barely walk, and each step is in terrific pain, or if I live or die. I must sit in a chair most of the day and look around at my cluttered, dusty, house that I am not able to clean. I must listen to my husband make "casual" remarks a couple times a week about wishing he could have a good, home-cooked meal.

    See .... I am rambling ... and I don't mean to make you feel sad. So, I'm going to quit talking now! You see, people just get carried away -- I do --- it's like I'm here talking to my best friend, because she understands and will answer me back with understanding and not make me feel like I am imagining all this pain.

    After all, my husband has said to me before .. "how can someone be sick EVERY DAY???" He's just not in the program!!! He just doesn't get it! I have been sick nearly all of our almost 35 years of marriage. That's a long time for him to try to "believe" that I am sick!!!!!!!!!!

    Well, it just keeps getting later and later .........

    Thanks for being here to listen,
    Hugs,
    Janet

  7. Jen102

    Jen102 New Member

    It is a new day. Yesterday, for whatever reason, I was overwhelmed by the sad stories--I just feel so bad for the situations people are in, but today, and with your comments, maybe I will take it more in stride, or maybe take a break from the board, or maybe spend some time in prayer as suggested. People are doing exactly what they are supposed to be doing by posting, it's just that it got to me yesterday. Strangely, instead of just letting it get to me, i rambled out my feelings to all of you. Thanks for listening. Jen102
  8. matthewson

    matthewson New Member

    I just wanted to say to Carrie, that was a wonderful response to this post! I had never thought about it that way! Having no money or energy to help people, you can help with prayer.

    I had been feeling very sorry for myself lately, because it was always a dream for me and my sister-in-law to do mission work when she finished with her electrician program (she used to be a med tech like me). We were going to go on the missions through our church. Now with this FMS, I can't do anything like that. But, I can pray for the ones that can!

    Thank you so much for making a difference in my life today! I get so much from this board. It has enriched my life so much!

    Take care, Sally