Is Life Over?

Discussion in 'Fibromyalgia Main Forum' started by karalvd, Aug 22, 2006.

  1. karalvd

    karalvd New Member

    Hi everyone, I'm new here. I know I'm probably at the place where all of you have been, but I'm just ready to give up on life. I'm not even sure what's wrong with me, and no one else is either. I was hoping that some poor soul might have the same symptoms that I have, and might know where I can turn. Here's a brief rundown:

    Development of Raynaud's in November 05
    Onset of Mono December 05
    Positive ANA
    Mixed Connective Tissue
    Blurred Vision, Continuing fever, Swelling in hands, Lymphnodes still visably swollen, throat ulcers, tonsil stones, horrible fatigue and backpain
    And just to throw it in, I also have psoriasis and HPV

    It's been eight months since I've felt decent at all. Does anyone have anything to offer? Thanks so much,

    Kara
  2. mezombie

    mezombie Member

    My first year was awful, too. Like you, it took a while to get a diagnosis, which didn't help. But I did get better with time, and patience. I know it's hard, but please hang in there! You are going through the worst part of this mess right now.

    I'm definitely not "recovered", but I've learned to live a life despite CFS, and it's not a bad one.
  3. cjcookie

    cjcookie New Member

    working at the social security office today. I'm not downplaying that we have it bad, just kind of put things into perspective for me today.

    What I can offer is that after a while, you sort of get used to it. I still break down and cry about it all sometimes but it seems like it is a little easier to live with after a while. It's like the opthamologist told me about contacts when I first got them. You could get used to having a log in your eye after it was there long enough. Of course, he was exaggerating but it makes a bit of sense. I know this isn't that helpful but I'm trying to say that eventually, we all find a way to cope (mostly).
  4. NyroFan

    NyroFan New Member

    Kara:

    The other women are exactly right. I would have said the same thing and also see if you might be interested in finding a good rhuematologist in your area. For whatever reason they seem to be a good bet for many of us trying to manage the illness.

    Welcome!

    nyrofan
  5. karalvd

    karalvd New Member

    Thank you all for your encouragement. I have a rheumatologist now. My primary care physician is in the same practice (it's huge, like a small hospital almost) and I've seen her for years. They are great, they offer me a substantial reduced rate because I have no insurance. Both of them really are at a loss with me though. They still aren't sure what part the mono is playing with my illness, and what parts are really a permanent autoimmune disease (I forgot to mention that I have horrible dry mouth and cracked lips too). My mom was diagnosed with lupus about a decade ago, but has been in remission nearly since the beginning, but she seems like she may have CFS.

    This experience will definitely do one of two things, kill you or make you stronger. Here's a great story (insert sarcasm here) I'm sure you all will appreciate.

    My husband and I have only been married a year and a half, so most of my married life I've been sick. Well, he is a pastor, and was mine when I met him. After we left that church he was called to pastor another church. We went there in September, I got sick in December. After I was hit with full fledged mono, I felt all but dead. I got up to go pee and pop open a yogurt. That was my life for three months. One of the deacon's wives finally called me after about the second month. I decided since my wedding anniversary (April 2nd) fell on a Sunday, that I would drive myself to church for the preaching services since I knew I couldn't make it thru both it and Sunday School. Well, I blacked out and ran off the road on the way there. Make a note here that no one called to check on me from the church. Two weeks after that they approached my husband and asked him to leave. Guess why. If the pastor's wife doesn't have to come to church then why would they expect members of the congregation to have to either. Whohoo! How's that for a nice, loving, Christ-like group of people? If even one of them might have come to visit, or maybe bring a covered dish for their pastor, they would have known how sick I was.

    Well, that's that for my lengthy post. Just thought I might get everyone a little hot-headed this morning because I know you all have times where all you want to do is go pee and grab the easiest bite of something to eat.

    -Kara
  6. lurkernomore

    lurkernomore New Member

    With your feeling right now. Unfortunately, I do not seem to be able to spell anymore, LOL! Believe it or not, I had to backspace and try to spell the word identify four times before I got it right. (Still not certain it's right, but it looks close.)

    When I say I can identify, I am talking about being involved in church and getting ill. My husband is a deacon and missed one Sunday. Our phone rang off the hook and it was unreal how people showed him so much compassion. I have been ill enough to be housebound for two months now and I can count on one hand how many people have made any contact whatsoever. I would hate to even think that my husband could be fired over my being ill, but that would require him being on the payroll first, and he isn't.

    I think the most difficult concept of this whole illness is the adjustment to how others are going to accept it. Unfortunately, some never will. It is a real test of friendships and relationships and we all learn that very quickly.

    I pray that your youth is going to work in your favor and there will be a better treatment plan and very possibly, even a cure in your future. The most important thing that you can do for yourself right now is to take care of yourself and remember that people are only humans. Even those who attend church everytime the door is open are only human too and they do not see or understand chronic illness unless they are in a position to have to.

    Please don't misunderstand, I am not bashing church. I will most likely return to ours when I am able to get out again. But I do understand the feeling of being forgotten and/or being invisible and how it blew my mind because I really expected more from those I attended church with.

    Now I just remind myself of the fact that for as long as we put too much faith in man, we will always be let down, for none of us is perfect. As long as we have our faith though, and we cling to that, we will and can endure anything life throws our way. I pray you have much better days ahead.
  7. kirbycat

    kirbycat New Member

    The thing that most people go through is trying to continue their well life and not adapting to their unwell self. I fought it tooth and nail, I went nowhere, I stayed sick, tired and alone. I was an ER registered nurse for 30 years, it was day and night. A very long, scary and sad night. But eventually I came around and found that if I take thing slowly, I can at least do "some" of the things I enjoyed in my well life. I love gardening, well, I thought I could never do any of that again, but I went out at the crack of dawn(it was still cool)and weeded just a few weeds at a time. Then I could repot some flowers,if my husband lifted the potting soil bag up where I could reach it the night before. It was not much, but it was something. I am still learning how to do things. It's a big change from my well self to my sick self. Just getting out for just a little while and doing something that you can acomplish is worth it for the depression.
    We will all continue to learn and grow. I know that we all have different limitations but we can try.
    Cathy
  8. KMD90603

    KMD90603 New Member

    First of all, let me welcome you to the board. We truly are like a big happy, but sick, family here. I'm sorry to hear that you are struggling so much right now. It's difficult to feel so sick for so long. However, ME/CFS and fibro tend to be relapsing/remitting in nature. You'll find periods where you feel like you've been hit by a mack truck. Other times you'll feel half decent, and you are actually able to function better. My main piece of advice to you is to pace yourself, whether you're in the midst of a flare or remission.

    I can relate to the feeling of endless illness. I became sick after having mono over 9 years ago. I was diagnosed a little over 2 years ago with ME/CFS, and I've had my share of ups and downs. I came down with the flu in March of this past year, and had the worst relapse since first getting sick. I struggled with constant fevers and off-the-chart fatigue. Finally, things are starting to look up for me. My fevers have almost completely disappeared and I'm actually getting things done around the house. I still pace myself, but I can do more than I was able to.

    Again, welcome aboard and make yourself comfortable. You've come to the right place.

    Gentle hugs,
    Kim

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