I want e-mail pal who have cfs.

Discussion in 'Fibromyalgia Main Forum' started by kazy0061, Nov 18, 2002.

  1. kazy0061

    kazy0061 New Member

    Hello.Nice to meet you.I am lucky to have found this site.May I introduce myself frankly??I am 23 years old Japanese female.From my childfood I have suffered from serious allegy,dizziness.pain,fatigue,and various symptons,but I never give up anything,and finally two years ago I became CFS because of shock of steroid medicine.Here,no one(my family or even doctors) can understand this sickness.On the contrary they assume I am lazy and meanigless person.Here there is very few information concering CFS.Most Japanese doctores ignore cfs patients and make them to go only mental sick hospital.Now I can put up with my sickness(severe fatigue,allegy,dizzy,,etc),but I can not stand prejudices from people around me.I wanna act as other young,I wanna work,study,and play with friends!!Now daytime I am not allowed to lay down,so my fatigue are serious.(If I lay down daytime,my family will look down on me,I do not hope so) If you are suffering same as me or can understand me,I want become your penpal.Please tell me your experience and so on.And I wanna share your both happiness and sadness.Thank you for reading,take care please. my address is kazymachu@netscape.net
  2. kazy0061

    kazy0061 New Member

    Hello.Nice to meet you.I am lucky to have found this site.May I introduce myself frankly??I am 23 years old Japanese female.From my childfood I have suffered from serious allegy,dizziness.pain,fatigue,and various symptons,but I never give up anything,and finally two years ago I became CFS because of shock of steroid medicine.Here,no one(my family or even doctors) can understand this sickness.On the contrary they assume I am lazy and meanigless person.Here there is very few information concering CFS.Most Japanese doctores ignore cfs patients and make them to go only mental sick hospital.Now I can put up with my sickness(severe fatigue,allegy,dizzy,,etc),but I can not stand prejudices from people around me.I wanna act as other young,I wanna work,study,and play with friends!!Now daytime I am not allowed to lay down,so my fatigue are serious.(If I lay down daytime,my family will look down on me,I do not hope so) If you are suffering same as me or can understand me,I want become your penpal.Please tell me your experience and so on.And I wanna share your both happiness and sadness.Thank you for reading,take care please. my address is kazymachu@netscape.net
  3. Shirl

    Shirl New Member

    Kazy, I am so glad you have found our board. We do have many young people near your age on this site, I am sure some will love to have a Pen Pal in Japan.

    I think you are the first member from Japan. So a very big welcome to you.

    I am so sorry that your family does not understand your illness, hopefully someday they may realize that you are ill and not lazy.

    Who would want to be lazy, and miss all the fun that young people should be having anyway?

    Again, welcome to you, and I hope you make many friends here to share your interest with.


    Shalom, Shirl

  4. Pat UK

    Pat UK New Member

    you will like it here stay around, someone will answer you I am sure. I live in UK and cfs is not very recognised here I think we are all in the same boat when it comes to this illness.Anyway nice to meet you.
    best wishes
    Pat
  5. beans

    beans New Member

    Dear KazyMacha
    In my heart I feel for you.

    I weep with you for your lost youth.
    I lost so much starting at the age of 30.

    Yes your culture or your up bringing is very different from many others in the West.

    When you can not work and you are sick it is very unfair to be thought of as a lazy from people who are suppose to care and love you and support you.

    The old idea's probably won't change for many people in your country.

    You will have to abide your time and maybe your suffering and struggle will help ease some else in your situation in Japan.

    But you are a worthy person.
    Look in a mirror and tell your self I am a worthy person.

    This worth may not be noticeable to others.

    But what a person truely worthy is what's in their hearts and how they treat other people.

    You will need to hold on to the small happiness that you can find every day.

    And seek ways to steal a few minutes of rest here and there.

    Maybe when you go to the bathroom you can just sit and rest for a bit longer than usual.
    Maybe you can go to the bathroom more often just to rest.

    Find ways to steal time alone to close your eyes for 5 or more at a time through the day.

    I suppose to stay out of the mental Hospital you will have to keep much to your self.

    You can tell us here how you are feeling.

    You can still work and study and play but you have to pace your self take it much slower than your friends.

    This is will not be easy for you.

    You are young and it takes a long time for the mind to adjust to limiting circumstances.

    Be aware of others around you and you will start to notice others that have similiar ilness's.

    Since I have struggled for so long I can sit in a room of people and watch them and I can tell who is sick and who may not be.

    I know there are others who need understanding hearts in Japan.

    Write about your struggle and your life in Japan many people in other countrys would like to read about a real girls life in Japan.

    Share with me your life.
    I want to hear.

    All the words I wrote may not be what you really need they may not make sense in your situation.

    I hope you can the sense though that I care and my heart aches for you.

    I would really like to reach out and give you a hug.
    Beans



  6. kellym

    kellym New Member

    I'm so sorry that you are having such a difficult time with others not understanding your condition. All of us here on this site do understand you, though & glad you are here. Know always that you are NOT alone, and the best I can tell you to help you with your situation is to educate your family and friends about the disease. Put it into terms you think they might understand.
    Thoughts and prayers are with you,
    kelly
  7. soulava

    soulava New Member

    Hi Kazy,
    I can empathize with the struggles your going through with friends family and being younger with this condition. I'm a 30 yo man who has been living with CFS for the last year and have had to let go of much of my former active lifestyle for the time being. There is no doubt about the fact that living with illness is an immense challenge to all who are afflicted with it. I, too, have faced a limited amount of sympathy from family members and lost some friends who just don't understand. At first it hurt that people I care about weren't there for me when I really needed them, but after awhile I found it easier to simply accept that this condition may be a very hard thing to understand for some outsiders. I'm finding the longer I go with this illness the less I'm compelled to explain myself needlessly to others. The best I can do is to seek support from other people living with cfs and to be there for myself. Unfortunately, some of the worst people I've dealt with have been in the medical profession, where my symptoms have been discounted, my sanity questioned, and my money drained. Luckily, with all the time I've had on my hands recenty, I've been able find more compassionate healthcare providers, thank god!!!! I know this process isn't an easy one to go through whether in Japan or Seattle, WA where I live, but I encourage you to hang in there because there is always the possibility of change for the better. I wish you the best.
    Take Care,
    Eric

    e-mail: ericgoff@hotmail.com
  8. Rozmund

    Rozmund New Member

    Heaven has sent you to the right place for understanding, encouragement, support and finally knowledge.
    Click on email bulletins at the top of the site and their is a wealth of information that you can print off and share with your family and friends....and don't forget your doctor...every week more insights are being uncovered.
    So read them through - thoroughly - research the doctors mentioned - and get a good book - and with a few lifestyle changes, you just may be one of the lucky ones - when I got this DD there was no physician interest in it. As a recall my doctor kept trying to give me tranquilizers - and as long as I was "tranquil" I did not ask so many questions. Well, that changed and now I am digging for answers everywhere I can - it is part of our collective journey. This months Newsletter is terrific. This is such a large site - the Message Board is the interactive portion and keeps us in touch with one another, and let's us know who is hurting - but I do encourage you to check out the entire site and sign up for the email bulletins and whatever else turns you on. For me anyway learning all the little tricks of coping has been the answer and new ones are coming along every day. I have only been on this board for 2 weeks and it has turned me around - alot. Good luck on your journey.
  9. kazy0061

    kazy0061 New Member

    Thank you.I received many messages and I feel a little now I am not alone about this fatigue sickness.Thank you for warm welcom and many courage.If I have oppotunity,I will write more little by little.Thank you again.from kazy
  10. Nannibel

    Nannibel Member

    Hi Kazy,
    After reading your post I recognized the feelings and the hurt that alot of us with CFS experience. I am 50 now, but my symptoms started when I was your age or even earlier but I had always shrugged them off till I couldn't anymore. My extended family was not supportive , as well as most everyone I knew when I first fell ill. You must decide right now that you don't care what they think, they act the way they do because they just don't understand. You will have to be your own best friend and try not to worry about what others think. What would happen if you did lie down when you want. And in your country can they force you to go to a mental hospital? I know your country recognizes this disease, but they call it something else: low killer cell syndrome. Perhaps you can find a doctor who knows about that disorder. Unfortunately when you the medical profession can't find whats causing your problem they blame it on the mind, and unfortunately, when your body is sick it will affect your mind just because its attached to it!
    Please feel free to e-mail me, I have visited Japan and really enjoyed it, but no matter where you live, living with CFS is trying and you need support so you will find it here with other PWC's.
    Sincerely,
    Nancy V.