new to boards and would like some support

Discussion in 'Fibromyalgia Main Forum' started by jeunefille, Sep 23, 2005.

  1. jeunefille

    jeunefille New Member

    Hi there!

    I've been dealing with CFS since last December and its really effed everything up and honestly made my life hell. I am only 21...I shouldn't be having such problems.

    Someone I was very in love with left me due to CFS (before he knew I had it) and now feels sorry and wants me to forgive him for it, but its very hard. At the time I most needed him, he walked out on me saying "I really can't stand how you're just so tired all of the time and I need someone who isn't like that." he found another girl for a little bit but that didn't work out and now feels like a complete a-hole...which he should.

    My CFS has landed me in the hospital a few times as I believe i have CFIDS, not just CFS. I have been having recurring infections in my lungs and kidneys and like most of you, frequently feel flu-like or run low-grade fevers.

    I had to take a semester off of school last year after my ex dumped me and I became extremely ill and it was hard for me to do much. I spent much of that time and som of the summer in bed.

    I'm now back at school and am having much difficulties with people's attitudes towards CFS.

    I am in a sorority and we had rush recently. I said I would be unable to attend one of the nights because I was very run down and I was told "Well, we're all run down. If you miss, I will fine you $50." Feeling pressured, I skipped two classes and all of my other obligations in order to meet my sorority duties. I tried to talk to the girl about it and was told "I have a very hard time believing there is such a disorder. I think its in your head, you mainly just don't want to be here."

    I was able to go to limited status with my sorority, but am still required to go to some things. For example, this weekend i am required to go a retreat 2 hours away and I am very nervous that I won't have the energy required to do this. If I don't go, again a fine will be implemented and people wll be angry.

    Last night was my friend's birthday and she wanted me to attend a concert in a group 30 miles away. I said I couldn't because I needed to rest and would like to stay home and do quiet things. I went out to dinner with her for her birthday and treated her to dinner, but did not attend the concert. When she got home, she told me "You really should have gone." I told her I could not go because I am very run down and I need to be able to meet my obligations the next day as I am here for school and was told "Well, we all had class at 8AM the next day and we went."

    I just feel like I cannot get through to people sometimes. People are just unwilling to understand. Its better than it was no doubt, but staying away is still a process.
  2. Mareeok

    Mareeok New Member

    ...you are hurting so much and are exhausted. You're right, at 21 you shouldn't be going through this. In fact, at any age you shouldn't be going through this. But that is the nature of the beast.

    May I offer a tiny bit of advice? Stop listening to your friends who want you to just shake it off and join in with the fun. They may mean well but they know nothing about what you are up against. You need to take good care of yourself. You don't want to end up in the hospital again.

    I know you want to join your friends in their activities and clubs, etc, but right now it just isn't a wise thing to do if it is setting you up for a collapse. I never went to college so don't know about sororities except for what I've seen on tv. What happens at a RUSH? Is it possible to talk to everyone at once during a meeting or something so you can explain how serious your illness is? Is it possible to drop out of the sorority without being shunned by everyone? It is not fair that you have to stand on the sidelines during this exciting part of your life. Since you have a real illness is it at all possible for you to stay in the sorority and be exempt from certain activities so you don't jeapordize your health?? College is only for a short time. I would hate for you to suffer years later because of pushing yourself too hard now.

    I'm not trying to burst any happy bubbles but I am concerned for your health. But I will shut up now so wiser minds acn add their thougts. You are in my prayers.

    Soft heart hugs,
    Maree
  3. sunflowergirl

    sunflowergirl Well-Known Member

    young age. I worked with a young girl, age 2l, who also
    had this. She was familiar though, because her aunt and grandma also had it. She loves to travel and saves all her money for trips to Europe and elsewhere. However her friends understand that she needs these necessary rest periods of a day or two and they respect her.

    It's important to listen to your body and sometimes not your friends. They aren't going through what you have. Print out some things on FM and give them to your closest friends who will be more understanding then have a good talk with them and tell them how it is.

    Good luck, and try to stay positive and exercise daily.
  4. lovethesun

    lovethesun New Member

    You have to find that balance.It's important for your future health as well as your present health.you also need to try to surround yourself with supportive people.They are not always easy to find butthey are the ones that will mean a lot in achieving the goal of getting through college.A fine for being ill! Question that.Therehas got to be someone else that has cfids there.Maybe several.Hope this helps.It's all I can think of.Glad to meet you.Linda
  5. lbconstable

    lbconstable New Member

    You've gotten such good advice from the other posters. I don't have much to add. I just wanted to welcome you here and show a little sign of support!

    We've all had to deal with friends and family members not getting our illness. It's just so much harder at your age and in your social situation!

    Please take care of yourself first! If your friends won't understand they may not really be your friends.

    One of the things that has been hardest for me is to learn that I can't do everything that I want to do. I have to take a really hard look and make choices about what I really want to expend my energy on and evaluate if those choices are supporting my life goals. Is the sorority so important to you?

    I'm glad you found your way here!

    Love & Light, laurie
  6. LittleBluestem

    LittleBluestem New Member

    Your first priority needs to be your health and your second your education.

    My first advice would be to stop using the term 'run down'. College students are notorious for bad eating habits and bad sleeping habits which cause them to get ‘run down’. When they do, they still have to get to class, work, whatever the next day. You are not ‘run down’, you are ill. So say “I am too ill to go to the concert and make it to class tomorrow morning”.

    This sorority sounds like a bunch of jerks. Do you live in a sorority house? How can these people spend so much time with you and not see that you are more than ‘run down’? What sort of a person would accuse you of not wanting to be there? And how irresponsible to pressure you to attend social functions to the point that you skip class! I’m glad to hear that you are on limited status, but I think you need to take a close look at this group and ask yourself if they are adding anything of value to your life.

    Do you think they could be educated? They might not be willing to read a whole book, but there are some good articles on this site. Maybe you could print some out and take them to them. Would someone from the student health center or the school officials that oversee Greek organizations come talk to them? As you said yourself, you just can’t get through to some people because they are unwilling to understand. Don’t waste your time on close-minded people, now or when you recover from CFS.

    Since you are 21, I am assuming the young man that left you was a similar age. As you can see from the behavior of your friends and sorority sisters, CFS is difficult for ‘normals’ to understand and deal with. Problems with family, friends and employers are a common subject on this board. Frankly, I think it was more decent of him to admit that he couldn’t cope and leave than your so-called friends and sisters who badger you and make nasty accusations. He has also had the decency to realize that he made a mistake and admit it.

    I can understand why you were hurt when he walked out on you. You said that you were very in love with him. Do you still care about him at all? If so, I think it would be worth giving him another chance. No one is perfect. He, at least, seems willing to try to understand. Tell him you were very hurt by what he did (once, don’t dwell on it), but that you would like to start spending some time together again and see how it goes. Then see how it goes - does he seem to be trying to understand and be supportive and helpful? But remember, he is not perfect and he will not always succeed.

    [This Message was Edited on 09/23/2005]
  7. mollyq

    mollyq New Member

    Welcome! I'm sorry that you are ill at such a young age. I'm 51 and have kids who are 20 and 26 and I hate to think of them having to cope with this illness. It sucks!

    It is so hard to decide on a day to day basis what you're able to manage and when it's just time to crawl back into bed. It must be especially hard at 21 with so many possibilities opening up to you and so much pressure coming from every direction. But what is most important is you and what you need to stay healthy, not your friends or the sorority, or anything else.

    I wish you the all the best,

    Molly
  8. jeunefille

    jeunefille New Member

    thank you everyone!

    Littlebluestem,

    he has apologized and told me he has been worried about my illness and he used to be very friendly with me. But recently I feel like I've changed a lot and dont know if I can date him, so I flat out told him we should just be friends for now several times and he doesn't seem to want to accept this and has now vastly recoiled. I sent him an e-mail expressing the want to just be friends and I was given no response. I sent him a birthday card and got no response, until i asked him if he got it and he said he did and thanked me but he had to go. Definate shift in attitude from someone who was once so excited to see me again.

    I have asked to spend more time with him, but he is not interested, so I guess it doesn't matter anymore.

  9. Rosiebud

    Rosiebud New Member

    young girl - I used to live in France. I'm in UK so not so far away.

    My daughter has had CFIDS (I hate the term CFS but seems to be the one used the most nowadays) since 15 and went to university, got her degree, married and now finishing a Masters in social work. It's been hard for her, she had to forego a lot of social events to keep her stamina and she had to drop 'friends' that didnt understand. We;ve all had to do this - they're what we refer to as 'toxic' people.

    You know what you have to do, what's important to you and your health so dont listen to them. It's a hard cross to carry when you're so young.

    I think you're right to be friends with your ex, give it time and see what happens, once bitten!

    I think its unfair that you are getting no support at college, can you not speak to someone in administration and explain what's going on??

    Take care of yourself.

    love
    Rosie




    [This Message was Edited on 09/24/2005]
  10. rileyearl

    rileyearl New Member

    Hi Jeunefille,

    Are you a French major? Just curious!

    I'm sorry your friends aren't able to understand. In a way, though, I'm glad because that means they don't know about pain and suffering yet.

    I'm going to bump to the top of the posts a story called "Spoons". It offers a compelling description of what it's like to live in our skins--in a readable story. Maybe you can either read it to your friends or do a demonstration for them. They will get it, if you they take the time to hear you.

    The only suggestion I have is to stay away from men who are not wonderful. They all seem wonderful at first, but once they even hint at being bad for you--run away as fast as you can. I won't go into the ugly stories, but I learned that one the hard way and it took decades!

    I'm so glad you found this board. There are lots of other people your age here and many of them are students.

    Take care,

    Francie
  11. Windytalker

    Windytalker Member

    I'm new to the board, but not new to the struggles you're going through.

    First, I think it's best this old BF is now in the past. I gather he wanted you back on his terms, not yours. And yours terms just absolutely have to be your first priority. I'm sure this was all very hurtful, but leopards don't change their spots. You'll find the "right one" when the time is "right"...

    Since I never went to college, I don't know much about how sororities mix into the scheme of things for getting a degree other than being social. As much as I hate to say it, with the degree of your DD and its side effects, this may be something that will have to go by the wayside. Your education truly is the most important thing in your life right now.

    I truly admire you for forgeing ahead and getting your degree in spite of your CFIDS.

    I wish you all the best,
    Windy
  12. ckk

    ckk New Member

    hello, just wanted to first welcome you and hope to can find support here. no, you are right, at your age you should be out partying and having a great time and then being able to stay up all night to study for your tests after you have spent the night w/ your sorrority. but, life isn't fair is it? i myself am 35 and married w/ 2 children and feel i am too young to have fibro but what am i gonna do? sooooo, if i may, please dont be upset w/ me just trying to help....if you still care for your x maybe you should give him another chance, the reason for this? he is so young and at his age and being a guy (sorry men)but they tend to take a little longer w/ wanting to settle down, let me fix this a little (the men in my life) that is what i have found. i dont think they know how to react when someone they love or care for is hurting and maybe he got scared. just a thought. hey, your young so if you want to forget him by all means....like i said just trying to give you a different angle on the guy thing. as for the sorrority. i too was in one and i know how it goes, maybe you should take a leave of absence for awhile and just consentrate on feeling better. in the mean time welcome aboard and i hope i helped and not upset you...i was just trying to help. take care.
    ckk
  13. jeunefille

    jeunefille New Member

    thanks for your support everyone. I'm glad people understand!

    Yes, I am studying French, however it is my minor, not my major.

    As far as my ex-boyfriend, I don't know that he even WANTS a second chance. Not too long ago, he was very friendly toward me and wanted to hang out with me, etc. but recently, he hasn't (after I told him I just wanted to be friends). I gave him a birthday card and he didn't even thank me for it (I had to ask him if he got it and he said he did and then said thanks) and on our college networking tool, refuses to add me as a "friend". It just really confuses me as someone who not so long ago was desperately in love with me and then when it ended wanted to stay close as close friends but I said I needed time. And 8 months later I come back and say I am willing to be his close friend because we were each other's first loves, first evrything and we are in the same place now, so I would like to remain close with him. Now, after saying I just wanted to be friends, he was really skittish and weird. Apparently people I don't even know know me as his ex and know a lot about me and have come up to me saying "You're so-and-so's ex, i've heard a lot about you." So I guess...I dunno. I guess he wants to be in a relationship or nothing...or just nothing. he still talks to me, etc., but he's more withdrawn than he was, although still turns red when I see him.

    As far as sorority, I would like to quit, however many of my best friends are in it and I don't just want to disaffiliate because I can never come back. The best I can do is be on limited status, although some events are still required.

    But I read the Spoon story, and that describes everything to a T! I remember one night, I skipped a sorority meeting to do laundry because I didn't have enough energy to do both and make it to class the next day and some of the girls got angry with me that I was "out and about" instead of staying in bed. Its just hard to explain to people that some things are less or more taxing than others.

    For example, last year, before ANYONE knew I was sick, I missed driving 8 hours and spending two nights with a select group I had ben chosen for because I was running a fever and generally run down. I went out to eat and fell asleep in my friend's room during that time and I got berated heavily because they said "You're supposed to be sick!". But driving 8 hours, sleeping on the floor and then driving 8 hours back is different than going out to eat for an hour and going back to sleep.
  14. NyroFan

    NyroFan New Member

    Junnifelile:
    Good for you, girl. You're drawing your parameters and are not wavering. You are winning the game by not giving in.
    It must be rough to be in school full time and going through this terrible disorder, but it sounds like you are doing the right things. Do not feel guilty. Be proud.
    Hugs,
    NyroFan
  15. jeunefille

    jeunefille New Member

    i think a lot of you are misunderstanding what is even going on with this guy.

    he dumped me NOT knowing I was sick. He knows now and feels guilty about it, but how guilty I'm not sure. he wanted to remain friends, but I am having a hard time getting him to do this.
  16. LittleBluestem

    LittleBluestem New Member

    can be very time and energy consuming. I’m not sure you really need one in your life right now. You are at a stage in your life when you are growing and changing rapidly. The fact that you and your ex-boyfriend have shifted apart may have nothing to do with your illness. It may be that you are neither one now the same person that you were when you were dating.

    You have told him that you are willing to be friends. You have demonstrated that friendship by sending him a birthday card. I would leave the next move to him. If he wants to be friends - fine. If he does not want to be friends - fine. I know it may not feel fine right now.
  17. jeunefille

    jeunefille New Member

    But I do blame a lot of my personality changes (for the better) on my illness. If I hadn't had my illness, things would be easier with him.

    Yeah, I don't know what he wants. He talks to me in person, etc. but never calls or IMs or anything. His behavior has been extremely hot and cold...it used to be more hot and now cold since I said I just wanted to be friends.

    Its weird because he was begging me to stay friends with him a LONG time ago and was practically crying over it, but claiming he had "moved on" with his life. I said I needed time (I still didnt know I was sick), but he was able to talk to me just fine without being awkward. Now he blushes when he sees me, acts funny around me, etc. 1 month after our break up we were able to talk like normal. Now 8 months later, he get very bizarre and tongue-tied around me. So I can't figure out WHY he doesn't want to be friends, I have done nothing wrong.