My Youth Stolen By CFIDS

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by TeaBisqit, Apr 1, 2008.

  1. TeaBisqit

    TeaBisqit Member

    My new neighbors told me today that I look my age. They were like, oh yeah, I thought you were FORTY. I'm thirty-eight. I got sick at twenty-one. What happened to all those years in between when I didn't get to enjoy life because I've been mostly housebound by the disease? Where is my youth? I want it back. I'm really depressed since they told me that today. So I'm just supposed to accept that it's gone? And it doesn't look like I'm going to get miraculously well anytime soon, so is that it? No life for life? Seriously, that is so beyond words depressing. And because I got sick so young, I still feel twenty-one. So I'm stuck in a weird timewarp feeling, much like people who go to prison at young ages are. It's very strange.
  2. bigmama2

    bigmama2 New Member

    i know how you feel to some extent. my cfs is bad, but not as bad as yours. i am also 38. mine started at 25, but was managable/milder but has gotten waay worse over the years. i live like an old person now. but i, like you, feel really young mentally because i dont work, am not married, dont have kids. i feel 25 in some ways and 95 physically.

    my brohter is also sick w bad bad cfs that started at age 25 for him also. how wierd is that? and i am 7 yrs older than him. so he understands your situation also. he has been semi housebound for 7 yrs now. somehow he is doing better in the last month or so. he is taking teitlebaums fatigued to fantastic vit min powder, and also hes taking a green barley grass powder. he is also eating healthier. and hes walking for exercise. oh and also he has been on cortef for his adrenals. that has been the most helpful thing. cortef is rx.

    there is a otc supp to help adrenals called "Miladregen" and also "Isocort". i take them. they have helped me a little. they are not expensive. maybe you could try them?

    take care girl- i feel for ya.
    bigmama2

  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    tea, I can't imagine being sick that long.

    I found an attitude that helped, though. I may not have the life I wanted, but I still have some good in my life.

    So often we look at what we lost, what we don't have, we don't think about what we gained or what we have.

    Part of the problem is expectations. The Bible says, "Expectation postponed is making the heart sick." Society tells us we are supposed to do what we see in the T.V. commercials.

    Romantic novels tell women that they are looking for prince charming. They have expectations of a man who will be this person. And, after the marriage, the cinderella syndrome sets in. (misnomer, of course it isn't real syndrome) It is a disappointment that happens for many young women. The problem is not that they married such a bad man, but that they had expectations that were based on a false image, a dream.

    It may seem that many people have had the perfectly portrayed life of beauty, college, nice career, marriage, children and then grow old together.

    But you don't know what it is like to live their life. You may not know their problems. And if you knew, you might would prefer your problems.

    Everyone alive has some limitations of some sort, financial, health, obligations, or something else. Learn to live a life within your limitations.

    Hope that helps.

    Tina
  4. Mikie

    Mikie Moderator

    It is always so sad to me that there are so many who are young and suffer so with our illnesses. I can look back into early childhood and see early symptoms but I always considered myself healthy until my 40's when my illnesses were triggered full blown. It is far more tragic when our illnesses are triggered full blown in youth.

    As you know, I am a big believer in grief counseling for us. It helps us to cope with what is lost in our lives to these illnesses. We can never recapture that loss but we can learn to channel our energies into healing instead of our grief. My heart and prayers go out to you for healing.

    Love, Mikie
  5. Tawra

    Tawra New Member

    You could be in a state where you can't even get out of bed and have to have someone take care of you 24/7.

    I got sick when I was 16 and I'm 35 now, so yes half my life has been spent being sick. Yes, I feel like I lost a huge amount of my life too.

    Yes it stinks being sick, but I'm sorry you need to get over it and move on.

    Once I accepted the fact that I was going to be sick the rest of my life then I could spend time figuring out how to do things so that I could be as normal as possible.

    I now have 3 kids, run a business and have a life. It's not easy and more days than not by dinner I want to crawl under a rock and die from the pain and feeling sick but you go on.

    Until you stop wasting time worrying about the past you most certainly aren't going to have a future.

    Tawra
  6. fibromickster

    fibromickster New Member

    I will not be as harsh as the above post. Wow. I am glad you came to us with your feelings. That is why we are here to offer you support and love.

    After reading your post, you just broke my heart. I am so sorry this has happened to you. I always wonder why God picked certain people to have certain illnesses.

    This is the way I think of it and sometimes it does help and sometimes nothing seems to help.

    I always think thank goodness I don't have Cancer or I am paralyzed or any of my limps amputated. Then I think how lucky I really am. Also, I think okay, what can I do to get myself out of this slump. Call a friend and have dinner with her even if it is at your house and you can cook the dinner or just go to a movie if you are able. Take a walk, sit out in the sun with a book.

    Again, you really made me almost cry. You definetly don't deserve it, most of us don't. I hope you can cheer up Teabisqit.

    Love & Huggs

    Mickey
    [This Message was Edited on 04/02/2008]
  7. dani78xo

    dani78xo New Member

    I got sick at fifteen (I'm eighteen now), and while I went through a real bad year and a half where I thought everything was completely hopeless, I've accepted it now.

    I don't look at it like I used to; instead of seeing that my life won't ever be the same, and I'll never feel like a true teenager, or do anything, really, that requires more than a minimal amount of energy, I see that I still have a choice.

    I felt like I was in that time warp for the first year, when I couldn't go to school and I rarely was able to hang out with friends; I felt like I didn't exist. And even when I went back to school, I wasn't really all there. Everyone had kept moving on and moving forward with their lives, while my world had completely stopped. That realization was enough to put me in a fog for a while. I was alive, but I wasn't really living.

    But I've made my choice, now. I'm not the same energetic person I was before, but I'm still not giving up. I have my whole life planned out--even if I know it'll be so much harder than it would have been if I weren't sick.

    Still, I don't fool myself that I'm past the worst of it. I've had one major relapse since I first got sick, and it really got me down when it happened. I'm not going to be so optimistic that I expect I won't have another relapse, but I'm not going to count on having one, either.

    I get what you're saying about the time warp; I felt the exact same way until I accepted all of this (though by no means am I saying that I'm completely okay with being sick--it's way too hard at times, but I just always look at the silver lining). But I really think it's all about how you look at it. Yes, there are things that I won't ever be able to do, but my limitations are what make me want to succeed.

    I'm not young, I never will be, but I've already promised myself I won't dwell on that fact (though we'll see how easy that promise is to hold up once I get to college next fall). It's really hard to look back and realize that you've lost however many years, but I really think people in this situation have the most potential to be really, really strong.

    Sorry, this suddenly turned into something out of a sesame street episode :x. It's just something I feel really strongly about. I lost my youth, too, and I think about it every day, but I try my hardest not to look back.
  8. becc

    becc New Member

    Tea, I will never understand why some people feel the need to tell others who are having a hard time to "get over it and move on". Yes, our lives could be worse but that doesn't change the fact that when you become sick very young with an incurable disease, life can be pretty bloody miserable.

    I was diagnosed with severe ME at age 14, after being sick for a couple of years. I'm now 27. I've lost more than half my life to this illness - and when I say 'lost', I mean it. I've never had a job. Can't really look after myself. Have lost most of my friends because nobody can be bothered keeping in touch with a person who can't do anything. Can't date. I've watched the people I grew up with go to university (without taking 6 1/2 years to complete a 3 year degree), create careers, get married etc etc...

    I go through stages of not caring and stages of caring a great deal. Currently, I'm heartbroken by this disease. I've finished my study and for some unknown reason, my mind is fairly good at the moment. I desperately want to use the knowledge I've gained but my body won't allow me to do what I want to. I'm bored to tears. Most of my life is spent lying down; when I'm able to go out, I pay dearly.

    This is a painful illness, both literally and figuratively - it's normal to dream and then to grieve the fact that those dreams most likely won't come true. Everybody does - but when you're seriously ill, the grief is more intense as the degree to which reality falls short of your dreams is extreme.

    Take care,

    Bec
  9. kholmes

    kholmes New Member

    Boy, I can relate. I've had CFS since my early 20s, and I'm 41 now. During those years, I was fortunate to get in some semblance of a life, with a teaching career. But I knew something was seriously wrong. It didn't hit me hard early like it did you. But now, I'm mostly recliner bound, and I need a scooter or powerchair to go farther than about 30 feet. I, too, feel like I'm missing out on things. I hate how this illness has stolen my teaching career. There still can be beauty and fun in this life, and I don't want to miss a day that I have left, even being so disabled. I'm hopeful that the next life will be far better.

    I noticed that you're quite the gamer. Do you play WOW or LOTR online? I don't have the energy to, but I have a couple friends who do.

  10. TeaBisqit

    TeaBisqit Member

    First, I do want to say that harsh posters are not very smart (huge understatement, but trying to be polite on the forum). Everyone's disability is different. Just because someone can do more than someone else does not mean that the person who can do less should be treated badly. Some people are selfish and clueless.

    Part of my post was about vanity. I don't like being told that I look Forty, when I should still be twenty-one. That is beyond not fair. I would like to just erase the sick years and be the age I was when I got sick.

    Alot of people have asked me what I do with the gaming and such. I'm a file coder. I am the mother of the SimPe program that is used to edit the Sims2 files. I am an active member of the SimPe development team. I've spent the last ten years reading and writing the Simantics code language. And all these years, I've spent creating free files for the game and making people happy all around the world. My Sims2 site has just about forty thousand members now. My files and my work are known and used all around the world and have been translated into many different languages, including Russian, Italian, German and so on. That is what I do with my time. I don't get paid for it. But I get paid in the letters I've gotten over the years from the community members telling me how much fun and enjoyment I've brought to their lives.

    Coding the files takes my mind off the pain of the disease. And it's something I can do in my own time. Coding keeps me sane :) What's interesting is that a different part of my brain does the coding. Some part that was either untouched by the disease or actually enhanced by it. But I have had boughts of the short term memory loss that have interfered. When that happens, I just wait it out till I'm alittle better and can finish whatever I was working on. As I said, I don't get paid for the work, unfortunately, but it's something I've been able to do inspite of the disease. And I enjoy it and I'm good at it.

    Unfortunately, I will have to seek out a way to earn some money in the next few years, and I have little idea of what at this point because I am not well enough to work outside the home. We'll see what happens.

    Had I not gotten sick, I probably never would have done the coding. It was definitely something I was meant to do. It's just a shame I had to get sick and lose my life to do it. I suppose the only way we will ever really know why things happen as they do is when we aren't here anymore. I always feel like I was taken out of my life and given something else.

    Now, back to my original post. Come on, who wouldn't be depressed being told they look their age? OMG, like it makes me feel like I've totally lost my looks. Like, thanks for telling me I look like I'm washed up and been hung out to dry. It's bad enough that I gained alot of weight from the disease, but to be told I'm like totally old and fat, nice.

  11. fibromickster

    fibromickster New Member

    Please don't pay any attention to the harsh posts, they are just down on themselves otherwise they wouldn't act like that.

    You have every right to feel the way you do and we are the people that you can count on to get it all out of your system. That is what i am here for, to listen, to get advise, to get sympathy and encouragement.

    Again, I am so sorry that rude, ignorant people would even say that to you, why can't people just keep their negative comments to themselves and honey i am sure that you don't look that much older, you were probably just having a bad day that day or maybe you had just woken up. I know when i wake up I probably look 50 or 60, LOL.

    Cheer up honey and please vent anytime you want. I will listen.

    Love ya

    Mickey
  12. Mikie

    Mikie Moderator

    Our feelings are real and if we deny them, we do not evolve. It is important to be able to express them. I suggest grief counseling not so people can "get over" their feelings; I suggest it so that people can use their feelings to get to the acceptance stage. Accepance isn't giving up or giving out. People don't travel the grieving road in a linear pattern. They can have one foot in anger and one in acceptance or one foot in denial and one foot in acceptance. Acceptance just helps us to move from anger, denial, and/or depression into accepting what we cannot change and channeling our energy into more positive directions.

    Tea, it sounds as though you have taken your lemons and made lemonade through your coding work. I'm impressed. Like I said, though, we can have one foot in acceptance, using our talents with what we have, and still have feelings of being cheated by our illnesses. It may not be much comfort, but I think we all have these feelings. We should be able to express them. We can't "fix" one another but we certainly can offer support by simply listening and acknowledging each others' feelings.

    Our feelings are to our emotional well-being as our pain is to our physical well-being. When I sense feelings of despair, anger, etc., it is a sigal to me that I need to pay closer attention to my life and figure out what I need to do. Sometimes, there is a buildup of tension for years before feelings rise to the surface and become acute. It is like the pressure in the Earth's plates before an earthquake. If we can learn to listen to our own feelings, we can sometimes correct our course before a complete meltdown. Recognizing feelings and expressing them is the first step toward correction.

    Best of luck with your life and your health. Gentle hugs and prayers for you.

    Love, Mikie
  13. dannybex

    dannybex Member

    Tea,

    I feel the same way as you do...and as I'm sure MOST do. I've lost the best years of my life...been sick for about 10-12 years...just when I thought my life was finally starting -- at age 38!

    But we can't go back, have to take each day as it comes, and try (as hard as it may be -- and believe me, I've been suicidal many times, even in the last few months) -- but we need to try and look forward and look to others stories of inspiration, like Mikie's and others.

    Here's one from a yahoo support group. A woman posted several months ago that she had been sick for FIFTY FOUR years -- she was sixty-seven and had been sick since she was thirteen. I can't imagine anyone being sick so long...

    She had tried EVERYTHING, every type of doctor...you name it.

    About a year and a half ago she looked into the Patricia Kane fatty acid testing and protocol (she also uses electrolytes as part of her treatment plan).

    She found out her fatty acid levels were totally screwed up, which screwed up her liver, her detoxification, etc..

    I'm not sure how long she was on the the protocol, but if my memory serves me correctly, it was just a few months later that she was able to walk, to LEAVE HER HOUSE for the first time in years...and was feeling a lot better.

    I haven't had the testing done...too expensive for me right now ($400)...but am trying to add evening primrose oil slowly...then will add fish oil in a few months.

    Kane has tested thousands of patients -- and has found that flax and borage will often make people worse, because they have 'long-chain' fatty acids. Evening primrose oil doesn't, so it is more helpful...IF you're deficient in GLA fatty acids.

    Okay...I'll shut up!

    HANG IN THERE!

    Dan