POLL: sick and young - how do you feel about it?

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Dec 1, 2005.

  1. Shannonsparkles

    Shannonsparkles New Member

    Please share with us how your illness has affected your life. We really want to know. How do you cope? What hurts the most? How do you see your future? What helps you to carry on?

    Thank you for sharing your experience with us. FM/CFS people are some of the toughest beings on this earth. ((((young people))))
  2. smiffy79

    smiffy79 New Member

    the dx of fm and me was a godsend for me. ive been ill since i was a child and wasnt dx until i was 22 so i spent all thosa years knowing i was different and thinking i was stupid. and so i was miserable.

    as soon as i had a dx i started studying on fm,its best to know your enemy so to know how to fight your enemy.

    i am able to do so much more now i have an understanding and i have taken on more and for the first time in my life i am planning for the future, and i am ambitious in my plans.

    i have been told my my disability adviser that i am entitled to incapacity benefit which i turned down as i feel it would be all to easy to stay at home and not push for more and i want more :)

    i have a drive and a character that wont see me pushed down for too long but i think the chip i developed on my shoulder helps me get through the day in that i wont take crap any more ~ no ones going to bully me again!

    what hurts the most ??? physically its my back shoulders and legs ~ and noone gets close to touching my knees.
    mentally it the feeling of being trapped within fm ~ over whelmed by it and forced to stop when your desperate to do something else.

    and what helps me carry on? tramadol :)
  3. lease79

    lease79 New Member

    I'm 26 too, but have been sick since I was about 11 years of age. Things just got worse as I got older.
    Honestly I'm sick & tired of always being sick & tired :(
    Everyone else around me seems to be buzzing with energy & capable of doing whatever they want. I can't even walk to the corner store some days :(
    I live within my limits, because if I dare step a foot out, then I end up in a terrible flare.
    To be honest I hate living like this, but I just deal, because I need to be here for my kids & there isn't alot else that I can do.
    (Sorry on a bit of a downer at the moment...)
  4. kch64

    kch64 New Member

    Well I'm 41, and I think I'm still young. It SUCKS (sorry).

    I've been having symptoms for years prior to my diagnosis this year.

    no more to add.

    Kendra
  5. cczub

    cczub New Member

    Ever since I was a child I've always been sick. I've had mono and colitis. I'm now starting to deal with fibro thing. It takes alot out of you but with at least a diagnosis I'm hoping to be able to deal with it better. Getting up to speed on what's affecting me is a big help.

    What hurts the most physically is my lower back to my ankles... Emotionally it's not being able to do alot of sports with my 6 year old son.

    How do I cope? I keep informed, try to get as much rest as possible and make sure to let everyone I'm around what I'm going through.
  6. gvmeabrk

    gvmeabrk New Member

    Well really to some I am still young lol at 37 but of course I do not feel this young most of the time.I have had this possibly since childhood,however did not fully engage itself until I was 27.At first I did not cope well at all I was very angry.I stayed home for six years alot of that was spent in bed.My marriage was falling apart,I did not have the energy I needed to be the kind of mother or wife I desired.About six years ago I decided to get out of bed and begin fighting for my life back.I told everyone it is either going to break me or make me one or the other but I was not going to give into it without a fight.So I started working again I started small working as a cook for kids...I worked six hrs a day and 4 days a week.I done this for 5 years I found that at first it was a huge struggle I had to literally force myself to go to work sometimes in tears.But what I then realized was that my stamina was greatly improving.I no longer dreaded going to work and enjoyed getting out,and associating with my co workers.I then decided that I was ready for the next step and that was to become even more physically active so I got back into my childhood passion and that is horses.I also took up archery to improve my range of motion in my upper body and to strengthen my shoulders.Everything was working with the exception that when my body said enough I was forced to listen I would feel like I could just lay down wherever I was and rest.I still needed to take a small nap to get through the day.Last year my marriage did fall apart because I had to much bitterness about no support.I realized that this was sucking the life right back out of me as soon as I put it in.So now I am divorced and have custody of my 13 yr old.I was forced into seeking a higher paying job.My sister talked me into going to work at walmart lol.Well the position I was offered I really had no idea what I was walking into.I worked back in shipping and recieving unloading 2,000-3,000 lb pallets pulling them to their destination with all I was worth.Istoked groceries loading carts full with 20-50 lb cases over and over for the 7.5 hrs I was there.The first few days I worked there the floor tore up my knees to the point that everytime I changed surfaces to walk on when I left the store that it was crippling.I thought I was going to have to crawl to my truck when I hit the pavement.And when I got home I did not move unless I had to because the pain was so excruciating.In fact my dad caught me crawling out of my room to use the restroom and he rubbed me down with horse linament and we wrapped both knees with ace bandages just so I could walk when I hit the floor at walmart.This went on for a week before my knees fully adapted.As soon as I stopped working my whole body would imediately become stiff and ache I mean I was sore from head to toe.I decided becasue of my circumstances I needed more money so I went to overnight stocking boy howdy let me tell you I walked into a hornets nest.There was 15-22 pallets to be unloaded and stocked with just 6-7 people doing that.And the worst part was everything was time counted meaning we were being timed.All that merchadice was to be in it's place in basically 2 hrs time we were required to put out 65 cases an hr or we were fired.I was able to get myself to 98 cases per hr which I thought was nearly going to kill me.I was sweat from head to toe all the way.I was becoming he woman lol for the first time in years I had muscle growth,more stamina,and yes I was so sore every time I stepped out of bed I could hardly function.But what I realized is that once I got back to work all that left me and I was good to go.Well the unknown did happen,one of my coworkers backed her rocket cart right into mine both carts full of merchadice and very heavy.She crushed my wrist between her cart and mine breaking my hand.So yip you guessed it I was off work.What I noticed was I started hurting all over again,I was more tired than usual I spent most of my days in bed again.I was getting severe headaches again my vision was a mess or fibro fog whatever it is.I knew I was plumiting and fast.I knew probably I was not going to go back to this job and I was becoming such a mess I opted to resign and get something fairly simple so I went into a home health agency.Yes this job is less physically demanding but I am finding that it is not lifting me out of this relapse I have been experiencing.I guess what I am trying to say here is that even though I felt like walmart was trying to kill me it was worth it.It kept my stamina built kept me focused and got me through my divorce without a relapse.Being a single parent now I have no choice but to work I have to that is just it.I guess the old saying "no pain no gain"has definately been experienced!I am very frustrated that I have lost most of that muscle mass and now I feel like I am old woman once again.Keep trying people I know it is hard believe me I know but I have been on both sides now and I know that when we put our most into it there can be brighter moments.Thank you and god bless all who have read all this to the end lol !
  7. pinkstar

    pinkstar New Member

    well yea.. i'm young heh

    my life is about doctors and 35-40 pills a day and injections and last, but not least, hope.

    i hope for better days. there are times when the pain seems to be unbearable. and then you just keep going.. i cope by just waking up. once you wake up, you can fave what comes your way because you have woken up and you're not dead.

    my back hurts. the fact that i can't go out dancing and walking around malls for hours like people my age hurts. there are A LOT of hurts. but there is also joy... simple things... doing the dishes now and then makes me smile... some can't even do that much..

    my future is sketchy. i will do what i can with it. i'm still in school. i switched to online school to accomodate my illness, but more important myself. i want to open my own business when i get older. i'll see where life takes me. witht he ffc, i am finally feeling a bit better in my 5th month... so i am going to continue with hope..

    my family pushes me and my friends push me to get better.. i have a lot of supports when i need them.. also, i have always been a very motivated, independent person.. i'm in therapy to help me cope with the really rough patches..

    you'll pull through it... :]
  8. tandy

    tandy New Member

    for over 12 yrs now.

    so I started this long road when I was 30 yrs old.

    For me,..this DD is so horrible in the way I feel,..and has dramatically altered my life in every aspect,..all I can say is " I certainly don't wanna die of old age",
    if it means doing THIS another 40 yrs? forget it!!

    (sounds terrible to say but thats the way I feel)

    Blessings to us all~
    Tandy

  9. LISALOO

    LISALOO New Member

    Hope helps me carry on, i've gotten over uncurable diseases before, although I think my luch is runningout.

    I think the worst thing, I'm 28, is that I got sick six months after I got a new job that I loved! And two months before I got married. SO I feel like I'm missing out on a normal marrige, no honeymoon, don't think I'll have kids.

    I'm still trying to work on coping. I say that I would be ok if I got this DD after I was 50 had kids, lived life, but I would still hate it.
  10. pawprints

    pawprints New Member

    That is how I feel, like everyone else has developed a life and I stay stuck in a time warp. My friends have gone on to better careers,my nephews are now getting married and having kids while I am still searching for treatments for this elusive illness.

    Since I got sick as soon as I got married at 28, I feel the saddest for my husband who never had a healthy wife. We went to a wedding last weekend and I just sat and cried when they talked about building a life together. I feel I cheated him out of that happiness.

    But even 16 years later, there is joy in the "details" of life. I have hope that new research, such as the discussions about lyme, will bring new treatments.

    Shana
    [This Message was Edited on 12/02/2005]
  11. kylesmom

    kylesmom New Member

    I'll be 35 this month, but I've had CFS since I was 28. I was an extremely active, over-achieving, type-A personality. I was ultra-successful (in my mind), very driven, could dance for hours and stay up all night. BUT, I yelled at other drivers on the road, consistently drove over 70 miles an hour to/from work, worked long hours, and was negative/angry a lot. Every bit of that changed the day I first got sick. I spent that first summer in bed, in pain, in fear. Things improved after about three months, but then I relapsed almost immediately because I thought I could go back to a normal life. (I am actually going somewhere with all this.) There was no light-bulb moment, but over time, I became a different person. I was forced to see that living life in a hurry, always looking to the future was a good way to miss out on the best parts. Stupid things like road rage melted away because it's all so unimportant. What I discovered IS important is living life day-to-day, appreciating what you've got because it can change in a moment, and keeping a proper perspective on things. I worked at a cancer center for five years, including the time when I first was sick and a few years after. Watching all those men, women, children fight and struggle and many of them ultimately die, certainly gave me the perspective I needed to deal with this disease. So what if I had to move out of my beautiful home, drastically cut back my hours and ruin my career? I was living, albeit uncomfortably, and I could have hope.

    I do still hope that someday I won't feel this way, and I do still get angry and grieve for the loss of my former self (parts of her were ok), but I also realize that this disease has taught me a lot about myself and the rest of the world. There is some peace there.
  12. katykat24

    katykat24 New Member

    I was dxed 2 years ago, but prolly have had it for 5 years. With depression, and anxiety, and pain - there a periods when i don't feel like i can have a life (meaning, getting married, having a job, then kids). This is because school has become so much harder for me and it makes me feel like my future is bleak.

    I used to be a straight-a student, but now, I'm having trouble keeping b's in my classes.

    It's really my friends who help me the most. At least, the ones who understand (which are few in number) Also, i'm a writer, so at least I can relieve stress that way. Sometimes, drugs help, but not for pain.

    My occupational therapist even told me that I'm going to be high-maintenance just because of the fm. (Always thought myself to be low-maintenance - i'm very easy-going usually). I just had to laugh about that.

    Since I am a HOPELESS romantic, the thought of being in love with one person for the rest of my life helps me carry on...lol...it's true. Not sure if I've found him yet, but i'm surely tryin!