effetcs of having CFS at my age

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jan 28, 2010.

  1. AuntTammie

    AuntTammie New Member

    another post got me thinking about this, and quite honestly, I think that getting this illness in my thirties is about the worst possible timing (& that is certainly NOT to say that it is easy at any stage of life), but if I had become sick younger, I would have simply wound up staying with my parents (not that that would have been easy on any of us, but it would be far easier than trying to move back in now - lots of reasons why that will not work at this point)

    ....if this had happened after I got remarried (to clarify - I am not married - just saying if I had been able to do so), I would have had him to help with stuff (physical and financial)(provided that he was understanding....and yes that scenario also has its share of problems and I would feel very bad putting him thru it, but it would still be easier than trying to live alone when I can barely take care of myself)

    ...and if I had become sick after working (post grad school job, I mean) for awhile, I would have more savings and higher SSDI payments (& would have had a chance to feel like I had contributed something to others & had a sense of purpose)

    ....and if I had become sick after becoming a senior citizen, then there would also be more assistance available (for things like cooking, cleaning, getting groceries, etc....there are many resources available for helping seniors & many financial discounts)

    ....when you are single, in your 30s, and chronically ill there is no help out there....there is also no one depedning on you, which I do have to say would make this even harder, but hopefully if there were children depedning on me, I would also have their father to help, too....the only time that I could have gotten this that might have been worse was while I was married to my abusive ex

    ETA: the amt of time that I will have to manage with no money and no physical help makes this hard, too....when you are in your thirties, life is most likely going to go on for an awful lot longer (& it's harder to stretch resources that long)[This Message was Edited on 01/28/2010]
    [This Message was Edited on 01/28/2010]
    [This Message was Edited on 01/28/2010]
  2. karynwolfe

    karynwolfe New Member

    There are many younger than you who have absolutely no physical (or emotional, or financial) help from husbands or partners or parents or siblings,

    who never got to work at all and therefore have no savings,

    who never got the chance to even get an education so that they couldn't get a job even if they DID start to feel better,

    and regardless of when someone gets this disease WE ALL have to deal with the abuse from our doctors and our so-called friends and the medical industries and God willing we even have the PRIVELEGE to fight with our insurance companies because so many of us don't even have health insurance at all, not to mention the fact that most of us are helped way more by herbs and supplements that NO health insurance would pay for...


    No, I don't think it's the worst age to get it, and I do not like seeing this "I spend my time thinking about how bad off I am" attitude that you're having right now. It's time for some tough love. We all have troubles and yes, some more than others, but never EVER forget that there is always something to be thankful for, because out there, probably right next to you on the forum, is someone praying to God every day for the simple things even WE take for granted.


    With albeit very blunt love, karyn
  3. nah.stacey

    nah.stacey Member

    Karyn, you haven't read many of Aunt Tammie's posts have you?????

    Aunt Tammie very rarely has "poor me" posts and when she does it's because things are a lot worse than she is letting on. She is one of this boards most loving, compassionate and positive posters I have ever read. Most of the time she is broadcasting love and support to someone who is going through a rough time and yeah everyone needs a B & M moment, otherwise you can't survive with this thing.

    Aunt Tammie, I wish there was a way that would make life easier for you, everyone for that matter with this DD. I cannot comprehend living and fighting this DD alone. I have a supporting hubby for the most part and my children are grown up so not much help there, as they have lives of their own to live. I also have a 24 yr. old son who has this DD and is still learning to cope with it. Luckily, he has a home with us even though he truly wants a place of his own. I understand about the timing issue, mine hit while I still had teenagers at home and a son who was dying and the stress was overwhelming. I'm grateful that you got to go to school though, at least you don't feel like life has entirely stripped you. Knowledge is one of those things that can't be taken away, semi-forgotten due to fibro-fog, but still there. I'm just sorry you can't put it to the use you wanted to.

    I still vote for the past thread on a CFIDS community where the majority of us have the DD, but there are others to help take care of us. Even as one poster put it, they have a roommate that has this DD and they take turns, so to speak, being the worse one and taking care of the other with a true understanding of this DD.

    Can't you just come and live at my house?

    Hugs,
    Nah.stacey
  4. AuntTammie

    AuntTammie New Member

    I said it was the worst time FOR ME IN MY OWN LIFE to have gotten it.....this is NOT a comparison to others and how good/bad they have it

    I also do not "spend my time thinking about how bad I have it" but when I am constantly confronted with that and when other posts get me thinking about this and I need to vent, then this is supposed to be a pace where I can do that....I have certainly listened and offered support many many times when others have needed to get something out

    I HATE comparisons with other people bc they do not help anyone - telling me how much worse off others has REALLY DOES NOT HELP....& I was NOT comparing myself to others and saying I was worse or better off than them, as I already said

    I do appreciate that you think you are writing this with love and I know that you are generally a very caring person, so I am trying to take that with that in mind, but really I think that my message was a bit misunderstood, too, bc what you are writing does not fit with what I was intending this to mean at all......I needed to vent and to maybe get a supportive answer or two, not to get this

    oh and I do spend a lot more money than I really can on supplements, bc those are mostly the only things that I can take, so yeah, that issue also applies to me (not to mention that there are NO Drs around here that will accept Medicaid, and very , very few that will accept Medicare - no good ones, anyway - the one I finally found who is at all understanding of CFS does not take it- aside from hospitalization, I might as well not have my insurance - I am more in the same boat as those who do not, for the most part)
    [This Message was Edited on 01/29/2010]
    [This Message was Edited on 01/29/2010]
  5. karynwolfe

    karynwolfe New Member

    Yes, stacey, I've read a lot of her posts... Which is what prompted me to type that. You're right in everything you mentioned about her: SHe is a WONDERFUL person...

    And when wonderful people who happen to be SEVERELY ill like she is, slip up and start thinking about how their situation is the worst, this disease will mentally eat you alive.

    My method was blunt, I know, but that doesn't mean it had any mal-intent.


    I hope you can stop your train of thought, AuntTammie, because you and I both know that when you start thinking like that it cannot end you anywhere pleasant, and that was my point. Even if your/our state, there are positive things to think of. We have to, it's how we survive these situations: Please don't stop now.
  6. AuntTammie

    AuntTammie New Member

    Thank you soooooo much for your response. I obviously read (& responded to) karyn's first and was pretty upset.....then I read yours and, well....like I said thank you......I feel a bit better now : )

    as I said to karyn, I was not at all trying to compare my situation to others, so if it seemed that way I am sorry about that....I know we all have our struggles with this and comparing doesn't help at all......I was just reading various things that were all kind of bringing this issue home to me, and I was truly intending to comment on my own situation - that's all

    anyway, I'm glad that you recognize that I don't usually post "poor me" stuff, and the rest of the nice things you said about me were really good to hear, too

    living at your house sounds nice ; ) (though, from what you have written, I am quite sure that your timing with this illness was not at all helpful either....and i am sorry that you and your son both have to deal with it....and I know that I have said this before, but I am so sorry for the loss of your son - I can only imagine how painful that had to be and probably still is)

    also, you are rt that it is good I managed to get thru school - it was totally by the skin of my teeth (as far as dealing with getting sicker), but it was most definitely worth it
  7. AuntTammie

    AuntTammie New Member

    thanks for this further response.....I think you were writing it while I wrote my last response to you......and i realized looking at that one that it might appear that I am "yelling" at you....I actually use the caps to emphasize what I write sometimes, not intending it to mean yelling, but I probably should be clear about that bc I don't want you to take it as an attack.....I was upset reading what you wrote, not so much now that I have read more, but I did not want you to get the idea that i was yelling, bc I wasn't

    as to stopping a train of thought - I do know what you mean, but I also know that it IS good to get stuff out sometimes.....venting can actually be a helpful way to work on changing how you look at things, bc once you get it out, your (meaning "my") perspective often changes just by writing about it.....I am usually pretty good at finding the good in my situation, but every so often it really gets to me and if I let it sit inside, it gets worse.....now if venting led to obsessing, then it would not be so helpful : )
  8. karynwolfe

    karynwolfe New Member

    oops! I replied before I saw you had.

    Do forgive me if I misinterpretted your rant to mean that you were focusing on the negative, or just pointing out something that in your own life was really really bad...

    Like so many here, I know where that leads. And for people who wake up in the exact same situation, maybe worse, every single day, to point out how life gave this to you at the WORST time is not going to help you. And I didn't wnat to see you thinking like that...

    There's nothing wrong with you venting about it, you don't need me to say that. And I know you don't spend all your time thinking negatively. You're one of the most inspirrational people on this forum. I just hope that a quick vent was all it was, and that this doesn't cause a cascade of emotions that will ultimately spiral out of control: We're only allowed to think in that way for very short amounts of time! Any longer is just plain dangerous for us. So I was simply trying to make sure that happens, reminding you that even YOU are lucky, even WE have things to be thankful for, at a time when your usual positive disposition was showing signs of faltering

    You're an amazing woman but even amazing women need reminding. =)

    So i hope there isn't any hard feelings,
  9. AuntTammie

    AuntTammie New Member

    no hard feelings and thank you for further clarifying.....and thanks for the compliments - I don't come here looking for compliments, but it is always nice to get them : ) (mainly its just good to know that the majority of my posts are not getting misinterpreted, bc I am usually writing to try to be helpful, and I would hate for those threads to be taken the wrong way)

    anyway, if you saw the first response I wrote to you, you know that I have read enough of what you write to think pretty highly of you, too.....that actually helped with understanding where you were coming from and it also hurt more in a way, too, bc it hurts more to be confronted by someone whose opinion you do care about....anyway, I do understand why you wrote what you did and I thank you for taking the time to clarify
  10. AuntTammie

    AuntTammie New Member

    thanks for your response, too.....glad it got you thinking : ) though I think that you generally seem to do a lot of thinking on your own (without needing any prompts).....many of YOUR posts actually get me thinking ....and I also think i am using the word think a bit too much here, so I will shut up now : )
  11. karynwolfe

    karynwolfe New Member

    Yes, I saw all the posts, seems we have a habit of typing while the other is typing too!

    I appreciate the comments, especially at such an unlikely place, haha. All in all this turned out to be quite a post! And I'm glad to see you feeling more lighthearted today (I almost typed 'lightheaded' but you're probably already that, too! *LOL*)

    Here's to a good weekend for us...

    with less-blunt love, LOL

    karyn
  12. fight4acure

    fight4acure Member

    I got this in my 20's. at age 23. What a downer this has been. Now I'm going to try to make the best of it by pursuing my dreams, dreams that can keep me from being depressed with this horrible illness.

    I'm in my 30s. and it sucks that I'm not married... or not moving in with a boyfriend who can help me out financially until I get my career started.

    Love,
    Fight :)
  13. AuntTammie

    AuntTammie New Member

    I absolutely admire you for pursuing your dreams, and I really hope that things work out for you. That's part of the reason that I was trying to give you as much info as I could re your planned move. And, to some extent I am living vicariously rt now - I am happy when others with this illness are still able to do some things & I can at least sit back and root them on
    ......other times honestly, it gets a little old, bc I would really, really like for it to be my turn (but even then I am still happy for those like you who have a chance to still live a little)

    Currently, I am really not even close to well enough to pursue my dreams - barely managing to get the most basic things done.....but I am still hanging onto the hope that someday something will help my health improve enough that I will once again be able to go after some of my dreams, too.

    And, as I wrote after the first post, I really and truly did not write this intending to compare my situation with that of anyone else.....was just looking at the resources I might have had if I had become sick younger or older than when I did.
  14. AuntTammie

    AuntTammie New Member

    you are rt that this turned out to be quite a post : )

    and i do definitely hope that you have a good weekend

    btw, (and this is not focusing on the negative - really - just explaining a little more about my current situation, and why for me, it is not the typical situation you might be envisioning for someone in their thirties who had followed a more traditional path)......I didn't go straight from high school to 4 yrs of college and then get a good paying job......was instead trying to deal with a lot of previous abuse (not my parents, thank God) and then wound up in an abusive marriage, so school kind of got stretched out and delayed (couldn't be an effective counselor until I dealt with all that happened to me)

    .....so, when I said "more savings" in my original post I pretty much meant more than the very, very little I managed to scrape together working low paying jobs while going to school after my marriage ended - prior to that, I had actually saved quite a bit from working during my teens, but when i got married, he was in debt & i wanted to start our marriage off debt free, also thought he would learn from past mistakes....I got him out of debt, paid for much of our wedding, all of our (admittedly inexpensive) honeymoon, bought the things that we needed for our place (appliances, etc), and then he proceeded to misuse our credit cards and that plus some medical bills put us into bankruptcy

    .....so due to all that I didn't spend my twenties saving money from a good job....some of that was probably my own fault for being too trusting and also being a bit messed up from all that had happened to me.....and like i said before, getting sick during that marriage would have been the only time that (for me) might have been worse timing.....all that to explain that financially I am in a situation that is closer to the typical twenty -something....and again I am truly not saying this to be negative or to compare myself with anyone else - just to explain a little more where I was coming from with what I wrote initially
    [This Message was Edited on 01/29/2010]
  15. fight4acure

    fight4acure Member

    There is absolutely no good reason for anyone to be bagdering anyone for expressing how they feel on here. I saw a lot of raw nerves being exposed on here... and there's no reason for you to feel sorry for expressing your sorrow. It's hard enough to express it, let alone have someone take you all wrong. We need to be more sensitive in responding. If we feel a nerve has been hit, then a little down-time is good until we can deal with expressing ourselves in a respectful manner. Every once in a while someone's nerves get hit and then we all forget about the message you are sending and needing a good respectful and supporting response.

    Please, do not feel you have to defend yourself about your feelings. I was relating to you, not badgering you hon. I know it sucks, as I'm in my 30s and it hurts to have this.

    ((((((((((((((((((((((((((Hugs)))))))))))))))))))))))))))

    So, my question is, what are your dreams?

    Love,
    Fight :)
  16. AuntTammie

    AuntTammie New Member

    I definitely knew that you were relating to me in what you wrote.....just felt the need to clarify a bit more I guess.....I actually am really ok with what was written in response by someone else now that I understand where that was coming from.....and I did sort of know when I first read it - just was a bit hard to take when i was already really down...anyway, thanks for your compassionate response : )

    my dreams.....well if I am not censoring them at all based on how sick I am .....and in no particular order.....

    running marathons again, skydiving again, doing triathalons

    working as a counselor
    (my ultimate dream would be staring a Christian residential eating disorders, abuse & sexual assault, self-injury, and related issues recovery place....I know there are some of those out there, but there is a need for many more and I would really want mine to focus on practical stuff, as well as counseling....things like having people with eating disorders who have recovered enough to do this plan meals, go grocery shopping to get the food, and actually make what they planned - for so many people with ED's this stuff is never learned and it's kind of obviously a need....basically it would incorporate counseling and real life skills and would be as long term as needed - too many programs thrust people back into the situations they came from before they are anywhere near ready and they wind up returning to their old behaviors.....ultimately I would want to be able to provide some sort of scholarships for those who cannot afford this, too....and obviously this would have to start small bc of the financial implications)
    OR
    thing is that since becoming so sick and realizing that there are a lot of people who fall thru the cracks and so much need exists, I have a kind of competing dream and that has more to do with helping people with chronic illness deal with it (thru counseling them and thru finding them the kinds of practical and financial assistance they need...and also thru doing as much advocacy work as I can)

    I have also always wanted to do short term missionary trips

    I want to meet the child that I sponsor (he's in Ethiopia)

    move to CA

    travel

    have a family (thinking that would have to be thru adoption, since by the time this could possibly happen, I won't physically be likely to be able to have a child of my own.....lots of female issues - related and unrelated to CFS)

    possibly do something more with my photography, too


    yep I dream sort of big.....and thanks for asking, btw : ) anyway, I am not giving up on these
  17. fight4acure

    fight4acure Member

    Nice dreams! I had some desires to do something similar, minus the skydiving. Could you imagine me not being able to speek, as much as I type on here, lol. Rollercoasters have taken my breath away to the point where I could not breath. They aren't so much as scary to me as they are bad for my health. The rush of adrenaline and not being able to breath are too much on me.

    Yes, it is nice to help those out with this illness and other difficulties in life. That's a great dream! If you do happen to pursue this someday in the future, Master degrees are needed in these fields. Colleges have disability centers that may help on days when you need extra time to finish a project, or on days in which you are unable to make it to class to take an exam. Contact them, and they will ask that you have your doctor fill out a form that states your disabilities and that you will need extra time on homework and make-up days for tests, if you feel it is necessary.

    Traveling is fun! Just wish our bodies didn't hurt so bad. If I become famous, oops, I mean when, lol...., I'm going to have three giagantic stage coaches. One is going to have all of my music, band equipment, recording devices, etc. The second one will have all of my clothes. The third one will be my private area where only me and my cats will enter, lol, and reside.

    Photography is fun! Whenever you get the chance to, if your symptoms let up for a moment you can take pictures of your travels. What is your favorite thing to take pictures of?

    Love,
    Fight :)
  18. AuntTammie

    AuntTammie New Member

    I did get an MA in counseling - that is the schooling that I mentioned struggling thru after first getting sick....actually it significantly worsened my illness, but I still think it was worth it and even if I never use it more than I did during my internship (though I really, really hope that I will be able to) I am so glad that i was able to do that.....my undergrad degree took me forever, and my grad degree took another 4 yrs after that, but I did it

    Actually, I had been trying to start a chronic illness ministry at my church even while being sick.....spent the last yr working out the plans for that, & had a lot of positive responses but at this point, that is also on hold - I haven't even been able to make it to church services much at all in awhile, so trying to do this, too is going to have to wait, but it kind of fits in with the counseling, advocating, and supporting others with chronic illness dream that I talked about

    kind of funny that you can't breathe on roller coasters but don't have a problem with smoke and I am (well I was) just the opposite....cannot handle smoke at all, but I had no problem with roller coasters and skydiving (although I did have to learn how to breathe properly for skydiving)

    stagecoaches for traveling sound good.....you could totally relax along the way and be rested when you get there...I am seriously excited for you about the whole music/songwriting thing - I really do hope it works out, along with your other dreams, too

    as to photography, mainly I took pictures of nature.....I do have some of my family and old friends, but they are not technically anything special (they are special to me bc of who they show, though) ....my nature shots are actually pretty good (not to brag, or anything, but I have had them exhibited along with other people's photography and have been able to watch people's candid reactions to my pics (when they didn't know I was the photographer)...and there were a lot of really positive reactions...I've had good reactions from family and friends, too, but i never know for sure if those are biased, or not......I can still sometimes take pictures even now, but I am doing really well to get out once a season to shoot a few pictures.....so not really enough to do anything with them....but again that is something I hope to be able to do more of someday
  19. fight4acure

    fight4acure Member

    I am sort of glad that my path to be a social worker didn't last very long, due to the poor job market, and other reasons... such as this illness, working up here in the cold weather... and needing a master's degree. The part-time (no benefits) social worker jobs that come once in a great while, are all that are left in this area. I do not want to have to drive back and forth on 2-4 hour round trips... just to go to work hurting so severely, esp during the winter.

    If I must, if I cannot find jobs in music, I will turn to my social work (1 1/2 - years) experience, and try to find something. Down there I really don't care what I get for a job, because I'll be so happy about writing songs in my spare time, in nice weather, and meeting new people. :) Music has been such a blessing in my life, as it has helped me to release my pain or just my thoughts and feelings (good or bad, or mediocre), and has lifted lots of stress away. I won't get upset if I don't make it as a songwriter. But my goal is to be one before I die, lol. :) But if I don't try, I will regret it forever. And, if I don't give this darn body a break from the extreme colds I'll never know how it will feel living in a warmer climate.

    My exbf told me to apply to a job here, locally. Apparently he doesn't want me going either. We became close friends after we stopped fighting with each other and stopped dating and living together. He likes the song I've been working on as it is about him and me and our differences. It's pretty cute, too! He's one that's always asked me why I don't write songs for a living, but now that I'm moving he would rather have me find a job here... that one single job that is a nightmare to work, as I worked there one day and got so ill, nasty nasty place!

    Yes, my smoking, ... I should quit soon since I have to sing a few demo tapes and my voice hasn't been tuned in a long time. Hard to toon when I'm busy coughing,,....

    You know what? When you mention your photos and how someone thought it was done by some Professional Photographer, (which, I will brag, as some have said I stage photos, when I don't, lol), that reminds me of a few days ago when I called one of my good guy friends, and I sang him the song I wrote about my exbf, and I told him I wrote it, before singing it, but he must not have heard me because he was playing on the internet, FreeCell, while on the phone with me.... but after I finished the song, he asked me who's song I was singing. I said, "What?" Then he asked again, "Who's song was I singing to him?" "Who usually sings that song, who's song is that?" I laughed out loud so hard, and said, "I wrote that song!" Now that's one heck of a compliment! He thought it was an actual song I was singing, not a song that I wrote. I'll never forget that compliment! And he's never been one to compliment me much, as we always pick on each other like brothers and sisters do. It was just so awesome!!!! He was shocked I wrote it! So, don't feel that you cannot boast about your abilities when they are good, esp. when people think some professional took the picture!!!!

    Sounds nice to start a support group at the church. Sucks though to have this illness limiting us from activities, especially when we were so active before this illness... and especially since we desire so much to be active again, doing all that we wish to accomplish.

    If my song writing ability flops, I'll just write songs like "Pants on the ground!" You've seen that funny one haven't you? Or I'll write a song like Surfin Bird, lol, the two songs listed on the Craziest songs post in chit chat message boards.

    Love,
    Fight :)
  20. fight4acure

    fight4acure Member

    I am sort of glad that my path to be a social worker didn't last very long, due to the poor job market, and other reasons... such as this illness, working up here in the cold weather... and needing a master's degree. The part-time (no benefits) social worker jobs that come once in a great while, are all that are left in this area. I do not want to have to drive back and forth on 2-4 hour round trips... just to go to work hurting so severely, esp during the winter.

    If I must, if I cannot find jobs in music, I will turn to my social work (1 1/2 - years) experience, and try to find something. Down there I really don't care what I get for a job, because I'll be so happy about writing songs in my spare time, in nice weather, and meeting new people. :) Music has been such a blessing in my life, as it has helped me to release my pain or just my thoughts and feelings (good or bad, or mediocre), and has lifted lots of stress away. I won't get upset if I don't make it as a songwriter. But my goal is to be one before I die, lol. :) But if I don't try, I will regret it forever. And, if I don't give this darn body a break from the extreme colds I'll never know how it will feel living in a warmer climate.

    My exbf told me to apply to a job here, locally. Apparently he doesn't want me going either. We became close friends after we stopped fighting with each other and stopped dating and living together. He likes the song I've been working on as it is about him and me and our differences. It's pretty cute, too! He's one that's always asked me why I don't write songs for a living, but now that I'm moving he would rather have me find a job here... that one single job that is a nightmare to work, as I worked there one day and got so ill, nasty nasty place!

    Yes, my smoking, ... I should quit soon since I have to sing a few demo tapes and my voice hasn't been tuned in a long time. Hard to toon when I'm busy coughing,,....

    You know what? When you mention your photos and how someone thought it was done by some Professional Photographer, (which, I will brag, as some have said I stage photos, when I don't, lol), that reminds me of a few days ago when I called one of my good guy friends, and I sang him the song I wrote about my exbf, and I told him I wrote it, before singing it, but he must not have heard me because he was playing on the internet, FreeCell, while on the phone with me.... but after I finished the song, he asked me who's song I was singing. I said, "What?" Then he asked again, "Who's song was I singing to him?" "Who usually sings that song, who's song is that?" I laughed out loud so hard, and said, "I wrote that song!" Now that's one heck of a compliment! He thought it was an actual song I was singing, not a song that I wrote. I'll never forget that compliment! And he's never been one to compliment me much, as we always pick on each other like brothers and sisters do. It was just so awesome!!!! He was shocked I wrote it! So, don't feel that you cannot boast about your abilities when they are good, esp. when people think some professional took the picture!!!!

    Sounds nice to start a support group at the church. Sucks though to have this illness limiting us from activities, especially when we were so active before this illness... and especially since we desire so much to be active again, doing all that we wish to accomplish.

    If my song writing ability flops, I'll just write songs like "Pants on the ground!" You've seen that funny one haven't you? Or I'll write a song like Surfin Bird, lol, the two songs listed on the Craziest songs post in chit chat message boards.

    Love,
    Fight :)

    P.S. The stagecoaches, 3 of them, will also have a room for a personal cleaner, laundry assistant, cook, and of course, ... massage therapist. Hopefully I can find that all in one,... or two people. It's fun to dream, isn't it? Now to attempt it, to the best of my abilities, anyway... :)

    Oh, and a hot tub!!!

    [This Message was Edited on 01/29/2010]