Feeling isolated and scared of the future...

Discussion in 'Fibromyalgia Main Forum' started by greeneyes24, Sep 10, 2003.

  1. greeneyes24

    greeneyes24 New Member

    I'm 24 and have had a severe CFS relapse for the last 5 months. First time I got CFS was when I was 17. It lasted 3.5 years and I was in what I call remission for almost 4 years (in reality I was about 85% well).
    While I was in remission I moved to Australia (from Europe)with my parents and my brother. When we moved here I didn't know anyone so I had to make friends all over again.
    I made a couple of "close" friends but I never told them that I had CFS. Since I was 85% well, they didn't notice anything. I remember once we were playing basketball and suddenly I started feeling very dizzy and weak and instead of saying I'm feeling unwell, I would make an excuse like "I have to go home now, I promised my brother we would go to the pool" and then I would go and lie down on the nearest park bench where they couldn't see me.
    I just couldn't tell anyone about my illness. As a result I sort of felt that there is a wall between me and rest of the world. Same was with boyfriends. I dated a lot but never really got close to anyone.
    Since I had this relapse, I'm basically unable to get out of bed. So since I can't even pretend that I'm well anymore, I have distanced myself from everyone. None of my friends know that I'm sick. I have just stopped calling them and returning their calls. If I have to talk to them I make it really short and say I have to go. Now everyone has stopped calling. I sort of keep expecting that I will get better soon and there is no need to tell anyone. I guess I'm living in denial. Even when I go to a doctor, and talk about my symptoms I tend to minimaze things. I don't do it on purpose it just comes out that way. So my mum has started going with me to make sure they know the full story.
    I'm still at the stage where I just can't accept that I will probably always have CFS. This feeling of isolation is really hard but I don't even know how would I explain having CFS to anyone, especially to people who have never heard of it. Also it scares me to think that I will not be able to have a career I dreamed of, never get married and have a family... I just don't know what is the right way to deal with all this.
  2. PVLady

    PVLady New Member

    I think many of us can relate to the isolation and inability to function the same as everyone else. It does not seem fair. This illness can rob us of so much, maybe if we let it. I also have never told my friends and do not like to be a complainer. It is nice to have these message boards and share our experiences. Just sharing, and offering each other support helps. This can be very depressing - but I try to remember my blessings and keep my spirits up. Maybe there is no "right way" to deal with this. You have coped with alot, and maybe you will get better, or learn more ways to keep yourself from getting sick. For me, I had to accept this illness and stop pretending it did not exist. That meant, really taking care of myself. It is still not easy, but alot better.
  3. kholmes

    kholmes New Member

    Hi, Greeneyes. It's great that you found this site; that's a great step to finding lots of good information, as well as making new friends.
    I had a very scary and frustrating year-long bout with CFS when I was 24 also, and then it went into remission for the last 12 years (varying between 85%, like yours, and feeling great), except for occasional month-long bouts. When I was 24, I had fever, achy glands, terrible headaches, and debilitating fatigue. Discovering food allergies (dairy) and a problem with candida, as well as learning where my "energy envelope" was, helped my CFS to go into remission.
    For eleven years, I've been able to teach full-time and even climb mountains.
    I'm been in a relapse now for a couple months, unfortunately, and I'm not working currently, but it's not nearly as bad as it was when I was 24. I'm not bedridden, though lots of people with CFS are much of the time. Keep reading, doing internet research, try different therapies (watch the expense, though!). Check into the role of diet; I do LOTS of raw food and fresh veggie juices, with very little carbs and sugar. Pace yourself and look at little improvements, no matter how tiny, as successes!
    Some people, including me, have had good luck with trying alternative medicine. Regular doctors can be very discouraging when they say, "You're suffering from depression," or "I can't find anything wrong with you." It's hard to be social, hopeful, and courageous, especially when you're feeling so terrible, but there IS lots of hope, and WAY more information about CFS now than there was twelve years ago. I will say a special prayer for you tonight.
    --Kholmes
  4. kellygirl

    kellygirl Member

    Do not be afraid to be yourself. True friends will be there for you and that support is soooo important. Grief is also part of a chronic illness. You will grieve the life you are leaving behind or the one you think that you may never have. Today I am so grateful. I don't think I would be the person I am today because of and in spite of cfs/fms. I learned to take care of ME, which I wasn't doing too great a job of. I had to conserve energy so I learned what was REALLY important and what was not. I chose to lose toxic "friends" that were sucking the life out of me, and keep the true friends. Right now, it's important to take care of YOU. Try not to isolate right now from the people that want to help you. I will pray for you as I am sure others will too on this board............
  5. kholmes

    kholmes New Member

    Just noticed that you've been posting since June. That's great. I was especially interested in your post about the psychic.
    Was there anything in particular you were doing to go back into remission, or was it just time, do you think?
    --kholmes
  6. greeneyes24

    greeneyes24 New Member

    About the remission, I honestly don't know how that happened. I even read my old journal from that time to see if I did anything. Moving to Australia seemed to have helped, but then again it could have just been a coincidence. Also, it didn't happen overnight. It was over a period of 6 months that I very gradually got better. I remember that it was at a point where I almost completly gave up hope. I was practically bedridden for 3 years and I accepted that I may never get better. Reading my old journal entries, I wrote one day "I feel that illness is letting go of my body. I'm getting stronger every day...". Then a couple of months later I wrote "I went to a friends birthday party and stayed till 3am, I'm sure I'll have a relapse tommorrow." . But the next day I wrote "I woke up feeling really well and even went shopping for almost 3 hours, this is weird, I don't feel sick at all." and so it continiued.
    Overall, I think it was just time, there wasn't a new supplement or a new medication. Also even when I was in remission I had days when I didn't feel so good. But it would only last from a few hours to a couple of days at most. That's why I say I was 85% well.