I'm sure this type of post is common here

Discussion in 'Fibromyalgia Main Forum' started by Mgoblue201, Aug 27, 2006.

  1. Mgoblue201

    Mgoblue201 New Member

    I feel like I have to pull teeth to talk about this. I almost never talk with my friends or family about it. I have this weird phenomenon where the more disconnected I am with someone the easier it is to discuss it. I feel trapped, ya know, a real sense of helplessness. It's like I want people to ask me what's wrong, but if they do I'll try to dodge their questions. Ten months ago I went to a fatigue clinic about an hour away in Flint, Michigan. It was a spirited visit, but it also burned a hole in my wallet. I can't afford future visits. I can't afford to wittle my money away on drugs and pills and tests that might or might not do anything. People keep telling me to get a job, but I hear most bosses value employees that can actually show up and work. It's embarrasing to be 22 and be forced to tell people you've never had a job. I tried to go to college for a short time, but when it came to attending classes I couldn't hold up my end of the bargain. Despite high grades my professors wouldn't understand my problems.

    I don't want to bore you with a life story or a laundry list of symptoms. I spend so much energy trying to explain CFS to other people, but it's something they'll never understand. Here I don't have to say a word and already there's a mutual understanding. But there's a fairly common phenomenon amongst people that are down on their luck in that the problems typically compound. It's not enough for someone to lose their house. Their wife has to leave them too. It's frustrating to not only have to deal with all of this, but also have to deal with people that won't listen. But I'm sure that's another thing most people here understand all too well. Hopefully I'll be starting distance learning courses sometime in the next few months, but I don't know how far that will get me. Right now I'm playing it by ear. I want to a writer. It's the one thing I feel I'm actually good at. Unfortunately whenever I send an application in to a website or newspaper I typically get ignored, probably because I don't have any work experience. Even when I try to explain my situation they still won't listen. It's like the entire world is deaf sometimes.

    I guess a lot of this post is for myself. I almost have this need to discuss these things, but I feel I can't do it with anybody I know personally. I don't talk about any of my personal life to anybody. I feel better that way. But it's reaching the point now where I feel I can't do this by myself. It's not possible to go through life being ignored or misunderstood. I mean you can't get a job unless an employer hires you. I can't live like a normal person, but everybody is expecting me to. It's just too much, and I can't handle it. Anyway, any comments or advice would be appreciated.
  2. Shannonsparkles

    Shannonsparkles New Member

    Welcome, Mgoblue201!

    I've been here one year as of this month. It's helped me to feel more comfortable about myself. A lot of things that I used to feel ashamed about, I'm learning that they are just symptoms and not personal failings.

    I'm 24 years old, and I've never had a job either. I finished high school with the bare minimum number of credits to pass. My grades were good, but my attendance was patchy. The last year, I had to choose easier courses. I gave up biology and took, yes, arts and crafts. AND a free block.

    I hope to see more of you here. If you edit the title of your post to something like "I'm new here" you'll get a lot of welcomming replies so people can meet you sooner.

    As for writing, you won't get paid for being here, but you'll always have a lot of readers who care about you. :)

    Okay, my brain's in temporary shut-down.
    Take care. ((welcome)) Shannon
  3. Mgoblue201

    Mgoblue201 New Member

    I have no problems coping with what this disease has done to me (although it's extremely frustrating being forced to give up so much of my former life). But it's a very sobering thought realizing most of my friends are either married, graduated, or have had jobs since high school. Not a day goes by I don't stop and wish I could make a living and provide for myself and move on with my life. That's the worst part about it.

    Anyway, I never thought I'd get so many encouraging replies. When I try to communicate with other people about this there's always the notion in the back of my mind that they truly won't know how to deal with me. Already I feel like people understand. I'll try to check out all the websites people gave. Writing is nice because I can do it from home, but in my position it's a very hard thing to get into. The first thing newspapers look at on a resume is work experience because they have to know you're reliable. It's a very academic thing with them, and they're so caught up in meeting deadlines they tend to operate on a visceral stratum high above the frequency of any normal person. And when it comes to getting stories published it's a very picky business. If they don't like the font your story is written in than it's out. If you don't have a thick skin and can't take constant rejection and pressure than both are very difficult things to contend with (and I'd like to do a bit of sports writing and novel writing in my lifetime). I can't thank everybody enough for offering things I can try or little pieces of encouragement.
  4. Shannonsparkles

    Shannonsparkles New Member

    Just curious, How do you live? You mentioned wishing you could provide for yourself.

    I'm still with my dad. Have you been sick for a very long time, or is dealing with the DD (darned disease, as we call it) a new thing for you?

    Don't be surprised about getting a lot of replies! :) We're all pretty chummy here. Best message board on the internet. ;)

    Will you fill out your bio profile?

    It's been fun reading your entries here. Glad you're on the site.
    ((write on)) Shannon
    [This Message was Edited on 08/28/2006]
  5. Mgoblue201

    Mgoblue201 New Member

    I'm surprised the more I look around the board just how bad some people have it. I mean I know a lot of people afflicted with this are bed ridden, but it doesn't quite hit until that's conceptualized in certain faces (I guess in this case large blocks of text). Most days I just feel like sitting around and doing nothing. I mean I could get do certain things but in a somewhat limited capacity. Last year I stayed with friends for a month and I passed off a normal life with a bit of regularity, that is if you call a normal life going out to eat, playing videogames, and hanging out with friends all day. It was fun because I had so little time to dwell on all the crap, but it's no way to live life without responsibilities.

    I can't do anything physically demanding. I can ride my bike for as long as I want given that I don't push myself, but if I try to run I feel winded within a minute or two. I was forced to quit cross country and track in high school because of that. In fact that's originally how all of this started. I couldn't run. I couldn't wake up to go to class. I managed to hold it together for a few years until I graduated, but out of the four years since I've only gone to college for one of them. The past ten months I've given up on a social life. In college and high school I had a pretty robust one, but it's harder than it should be. I can't say anything more than ten words without pausing and trying to figure out what should come next. I mix things up all the time. Nothing ever comes out how I want it to. There were certain things I didn't know how to respond to, and then five minutes later I would finally have the perfect thing to say, but by then it was too late. And worst of all some things just take a really long time to seep into my brain. That's why I like the internet. Everything I say comes out clean, just the way I had invisioned it in my head. There's no pressure or anything. I've never really looked for anyone to exchange post cards with so I don't feel too terrible over keeping myself away from so many people, but sometimes I really want to get out, if only to forget everything for a moment.

    Tonight for some reason my health is at its worst. I have a headache. It feels like there's a log jam in my brain and I just sorta sit here staring at the wall, but it's hard to stream a tangible thought all the way through my head. It takes me forever to make a post like this. And I feel terrible...it's tough to describe. It almost feels like an out of body experience. Every time I move my body it doesn't even feel like I'm the one doing it. Everything has an odd look to it. It's tough to even see. And it's like trying to figure out what somebody else is thinking. I barely even know what I'm thinking. There's just some sort of sludge stuck in my head gumming everything up. But nights like these are rare, thank God. I almost went to a friend's house, and I'm thankful I didn't. I would've been dead the entire night.

    Right now I'm living with my parents. I have a feeling that's not going to change anytime soon unless I win the lottery and am able to move out. If I have to envision my life right now, even with this disease, I would be in my own house writing for a magazine from a desk in my room. Maybe I'd be penning a novel off and on. At night I'd go out drinking with friends. On the way back I'd stick my head out the window and feel the wind in my hair, and for the first time in years I would actually be free. That's something I'd look forward to.

    I'll try to fill my bio out soon.
  6. libra55

    libra55 New Member

    There is disability services at most colleges. My daughter just started college and she gets disabiity services (Asperger's). as long as you have paperwork from a doctor documenting your impairments. they give you extra time on tests and don't penalize you for turning stuff in late, also alternate testing sites if you need that. They will provide note takers too if you have mobility issues. You have to be very pro-active in find this stuff so ask about it. It's under section 504 of the rehabilitation act of 1973 and it's the law. good luck.

    Michelle
  7. hob

    hob New Member

    I am only 25 and have been diagnosed with it at the age of 21. It is hard because many people think this is a DD that only effects older individuals. It was hard for me because the year that I got diagnosed was my senior year in college and I was bound and determined to have a career, well needless to say I don't have an amazing career but have been forced to concentrate on the things most important to me, my health, family and friends. Once I accepted those things as number one life has been much easier. I struggle to hold down a receptionist job, but I don't dwell on it because when I'm gone no one is going to care that I didn't have an amazing career they are going to think about how true I am to myself. Keep your chin up we are in this together.
  8. suzetal

    suzetal New Member

    I just read your post.Welcome to the board.I am sorry that you suffer with us.

    Your post moved me.You really know how to express what your feeling.

    I think you should write a book .Include what you wrote here.I felt every word you wrote.

    If you need help let me know.My husband was an American literature teacher for 34 years.He has also written articles for magazines.I'm sure he would gladly answer any questions you may have.

    And yes please as soon as you feel up to it fill in your profile.

    >>>>FOR EVERY DAY A NEW DAWN WILL COME>>>>.....Sue
  9. kaymac

    kaymac New Member

    ...about the isolation being one of the worse effects of this DD. Even family and friends can be just so understanding.

    I wish you could find a personal support group in your area where you met others your age face to face and get that encouragment.

    ((((((((((((((hugs))))))))))))))))
    kaymac
  10. sascha

    sascha Member

    Board is one thing that helps. A lot.

    i have deep feeling for what you are going through at such a young age.

    is there a support group nearby, or is there a sliding scale therapist you could work with? i am seeing one weekly and it has helped me enormously with recent crises. Keep on with the Board here, and also maybe find support in your area.

    i think it's often true that close family members and friends can't understand. they can only view from their own perspectives, and their own perspectives don't include DDs.
    i think that makes it hard for us to open up with them. it just doesn't seem productive, so you/we need other outlets.

    i had that experience in spades recently with family not listening to me; not hearing me. it drove me frantic. i made a stand and that seemed to get their attention, but what a torture it was for me to make it to that point.

    some of my family DO get it- how i am incapacitated and can't take things on the way i used to- some of my friends DO get it. Find such people, and limit time with the rest. maybe you could find literature to give to your parents to help them 'see' you. i understand there's an article in Oprah magazine this month about CFIDS. but now i'm not sure i remember what it is you have...

    anyway, you are taking some steps with keeping education going. and keep finding approaches to boost your health- i do think they're out there. and best of luck- sascha
  11. Mgoblue201

    Mgoblue201 New Member

    suzetal, if you're still there, do you have an e-mail address or any other contact info I can reach you at? I'd like to talk with you about that.

    I actually went to a psychiatrist a few years ago. It was on a complete whim, and he made me realize that I needed to go to college. That was a period in my life where I learned to cope with my illness, but in the process I began to grow complacent. Unfortunately the past year it's really began to chafe away at me again. I need to do something with my life, and every second that passes is wasted time.
  12. Mgoblue201

    Mgoblue201 New Member

    I actually have tried getting a job with my local newspaper, going so far as explaining my illness at length. They just come back with the same old tired response of how they'll consider me as if they never heard about my problems. But I like your suggestion at talking to a job center. I think I'll try that.