Please Help - Desperate

Discussion in 'Fibromyalgia Main Forum' started by Tiffin, Feb 22, 2003.

  1. Tiffin

    Tiffin New Member

    Hi,
    I have had ME for 7 years since getting rubella vaccine 3 days after the birth of my son. Its been like a nightmare but I know I'm not as bad as a lot of people. However, I've gone into a terrible flare up recently and in addition have become allergic to practically everything, especially medication and chemicals generally.
    i've read that dealing with allergies is one way of helping ME. Has anyone tried it. I know what I'm allergic to and avoid as much of the difficulties as I can but basically I'm whacked and very, very down.

    Please let me know if you have any solutions. Also, my poor 7 year old is really reacting badly to me not being well and is developing all sorts of nervous behaviours. I feel so guilty about this.
  2. pinkquartz

    pinkquartz New Member

    I also have a lot of trouble with allergy responses. Now there are so many everyday things I'm allergic to. I don't have a solution, wish I did .except one thing that seems to help my liver to process some of the unpleasant effects of exposure to toxins/allergies and that is bio-cysteine. i have obtained this from my nutrionist but if i remember correctly its a Biocare product. As you said you have M.E. i'm guessing you might be in England?
    I would also like to hear if anyone has advice or has managed to lose their allergic reactions.
    Do you have a friend or relative who could reassure your son? maybe he is afraid because he doesn't understand.
    pinkquartz
  3. Tiffin

    Tiffin New Member

    Pinkquartz
    Thanks very much for your message. Its great to be heard.
    Have you ME/CFS as well as the allergies? I'm in Ireland not UK and it seems that the allergy field is more advanced elsewhere.
    I've tried the reassurance by others for my son but he's too tuned into me and knows when things are on a downer. He takes on my symptoms, however hard I try tohide them from him.

    Keep in touch
  4. pinkquartz

    pinkquartz New Member

    have both cfs and fm both severely. I haven't yet managed to get my profile posted [something technical i can't yet figure] T o be very brief i've been ill for 23 years. For the past 10 years i have had to use a wheelchair to go out and there are all the extras like the allergies, frequent headaches bladder troubles etc to contend with.
    My daughter was 3 when i first got sick and part of my pain and distress was that she had to go through it with me. It broke my heart that for long periods of time i was too sick to go out and do stuff together with her or even take care of her without lots of help from friends. Well she's grown up now 26 and basically she is fine. We are still very close. I still feel she had to grow up too soon but she always knew she was loved and when we could we still had fun together. I will try to give you support regarding your son but i'm very tired now and must stop my brain is melting and to be honest i'm getting emotional. Well Ireland is pretty close! is your medical system similar to U.K.? certainly the U.S seems to be miles and miles ahead of U.K.
    I will post again tomorrow if i can
    I would love to keep in touch
    pinkquartz
  5. evileva

    evileva New Member

    So you are from the Emerald Isle, I think that Ireland is so pretty. I also have allergies with my cfs/fibro, however I haven't had them checked yet to see exsactly what I am allergic to. I know that mold has to be one. Maybe some of the others will know more about it. I just wanted to say welcome to the board.
    Eva
  6. Tiffin

    Tiffin New Member

    Pinkquartz,

    Your message has really helped me and I'm sorry if it brought back difficult memories. I'm delighted your daughter has grown up to be basically fine and that you are still close. That is so consoling. The one thing that I have always done with my son is read - from when he was tiny and we have a great bond over that. I think some of his current problems epecially with throat, clearing when I'm around, is because I went through a phase of very bad throats and couldn't read some nights. Its not the same for him if anyone else does it. I'd say we have the biggest library of children's books around.

    Was your daughter all caught up with your illness when she was 7/8 years? My son takes on my ymptoms and seemd to actually think he has them. For example, I had a mole removed 2 years ago and he swore that his back was done as well and went round sort of squirming in pain. It was awful to see it and I don't think I let him know the level of my pain at that time.

    Now he just can't be codded about anything. He's very bright and the fact that he's an only child ( the CFS saw to that as I was on so many drugs and warned against dangers of another pregnancy) means that he has no sibs to share things with. Also, its hard, as I'm sure you found having friends in to play as I don't have the energy to be there and his minder is not great with extra kids and I don't think its fair putting the responsibility on her.

    I'll go now for my siesta and thanks so much for your offer of help. I don't know anyone else who has gone through this and I still feel very bitter about getting the vaccine and being deprived of a full life with my son. But, in a way, only for him, I'd never have got this far. I just have to do my utmost for him.

    Bye for now.

  7. pinkquartz

    pinkquartz New Member

    I"m not feeling too well at the moment Tiffin, have a cold i think and very foggy brain.
    I've been thinking about you and i feel quite frustrated because i am very new to using the puter.In fact i am using a friends laptop. After I read your posting i felt the best thing would be a good chat over a cup of tea to get to know each other i guess. and i don't know how to do this with the Web.
    I know my daughter was often sad about how i was when she was younger around 8 i think. I found it really important to encourage her to connect well with her friends, it took a while because we kept moving then when we settled and she made good friends she coped much better. I wondered if your boy is trying to understand the illness by imitating your symptoms? He is so young to get to understand something we don"t really understand.
    Oh don't feel guilty its not your fault you are so ill. You are doing your best in difficult circumstances.
    Tiffin i feel i could rattle on for ages i really feel for you . maybe if you want to keep in touch we should exchange email adresses or do want to keep talking via the messageboard?. I really don't mind. as i said before i'm not used to communicating this way. so far i really really like this board but it still is a new thing for me
    hope you are on a good day , talk soon
    pinkquartz

  8. kadywill

    kadywill New Member

    I understand all of your fears and frustrations. As a young parent in the late 70's and 80's, I feared for my children's happiness and wellbeing, too. They had to see their mother go from being very energetic and outgoing to a shell of a woman who stayed in bed too much. My flares made my behavior change, as did the meds given to me during those times. I took antidepressants, steroids, sleeping pills, muscle relaxants, stimulants and appetite suppressants which all had adverse effects on me....and them. I look back now and I feel so sorry for them. They were often my caretakers and confidants and I don't think this is a healthy way to raise a child, but I was a child myself and had a distant husband who was disgusted by my change in attitude and appearance. He married a cheerleader and he ended up with a completely different woman. We broke up after 18 years, but it should've happened sooner. The kids saw too much.
    Now, my children are 25, 26, 27 and 28 and they all have reacted differently as a result of their upbringing, but one thing is common. They all avoid me when I am sick and they disregard the severity of my symptoms, because they have seen me really sick one day and then they've seen me bounce right back soon thereafter. They believe that I will always get better, so they have little appreciation for how badly I feel now. I am 47 years old and have increasingly severe symptoms. I never tell them I'm sick because I know how they'll react. My husband tells them when I am unable to babysit the grandkids or whatever they need me to do if I am in a flare and I don't hear from them again for awhile. It makes me feel sad, but I do understand. I wish this DD had waited until my kids were grown to appear, but it came during my first pregnancy instead. I hope your child will react differently to your illness. It just isn't fair to anyone.
    Kady

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