new to CFS Why are the ones closest to me angry?

Discussion in 'Fibromyalgia Main Forum' started by mxmom419, Dec 21, 2006.

  1. mxmom419

    mxmom419 New Member

    After being sick for a year I finally found a Dr who doesn't look at me like I'm crazy and is really interested in making me feel better. He has given me some really good ways to start and my friends and family act like they are mad because someone is finally given me hope to feeling better, and find out why. I'm tired of the question, "what's wrong?, what do you mean you just don't feel good?, no headache,stomache ache? so... what's wrong?" Now the questions are, "so what brillant words of wisdom did this Dr give you?, What happens when this doesn't work?, How long will this take?" I can't win. All I want is my energetic full life back and walk among the living again. Any ideas how to express to my loved ones that I'm not looking for attention and I want to feel better and I can't do this on my own? I'm so confused about how this happened to begin with, and the guilt and pressure is hard to deal with at times. I would not do this to them and can't understand why I don't have the words to make them understand. Open to all suggestions. Thanks
  2. LISALOO

    LISALOO New Member

    For some, it's because they can't make you better. I get that from my mom and husband. They both understand what's involved iwith CFS and how it's hard to get better. Others who don't know, they just don't understand, so I avoid the topid. Look for the letter to others. It's great to give to those who don't understand. You can even change it for you. Be open with how you're feeling. Let them know you need support, and while you don't think they're trying to make you guilty it does happen.
  3. Catseye

    Catseye Member

    I still see doctors who think it's all in your head. And they're doctors!! It's the name that has everybody's mind poisoned against us. Start telling people you have multiple metabolic system failure and when they ask what it means, tell them it means everything is not working right and your body is fighting to keep running smoothly. Nobody will know the difference, tell them they changed the name. Chronic fatigue is a horrible name for this, it SOUNDS like a psychosomatic illness name, even.

    Tell people it will take a long time for your body to start responding to nutrients again like it has in the past and the torture of feeling weird and bad all the time is almost unbearable. Your body is too busy fighting, all the organs are not in "balance" with each other and you feel like you've been poisoned and it won't let you do what you want.

    Tell them it's a "broken" body. How would somebody feel if they broke their leg? Okay, their leg would hurt. When the body is broken, the whole thing feels just plain "unnatural", maybe sorta like a really bad flu without the sore throat or stuffy nose. Almost everybody has had the flu and knows the "bad feeling" that you can't really narrow down. And don't use the word "tired" or "fatigue", use "severely exhausted" and say it feels like the body's energy centers that make the energy chemicals are "broken". It's not a matter of having coffee or sleeping late, there are specific things and processes in the body that are "broken" and they are extremely hard to fix. If some idiot suggests counseling to get your energy back, as them if they would go to counseling for a broken leg.

    Now, look up all the stuff we're all taking to get better. Start with the post "Heart Disease Secondary to Mitochondrial Malfunction", that's about the body's "energy centers". Don't let the "heart disease" part throw you, it doesn't matter. The post "Does anyone take ribose, coq10, B12 etc." or something like that, is about all of use who are doing it. And look at "what worked for me" at the top of the list of posts.

    I first realized I needed to take supplements when I realized my body felt like it was "starved" for something and I didn't know what. Now I know it was simple things like vitamins, minerals and amino acids, the things we need all the time. We have all become malnourished for one reason or other, and alot of benefit from supplementing these things because the body has broken down to the point where it can't absorb theses nutrients properly from the food it eats. And that's the first thing you have to do, change your diet. You will never regain your health if you're eating junk. Eat lots of vegetables without lard or msg to make them taste good.

    Spend some time here, you'll figure it out!

    karen
  4. mxmom419

    mxmom419 New Member

    Hey thanks!
    What letter? is it the one I'll get from signing up here? Is there anything that in real easy terms I can print off anywhere that might explain some of this to them? I'm really excited about this new Dr and just don't want to have to defend trying to feel better. How long have you had CFS? Does it get better? or I guess is it managable?
    Really thank you for your time it's nice to talk with someone.
  5. Adl123

    Adl123 New Member

    HI,
    Welcome to the board. There are many wonderul, generous people here, who are on your side.

    Please don't internalize the fact that your loved ones don't understand. It is almost impossible for people to uderstand what is outside of their experience. It's true, some people develop compassion, but others don't, until something happens to them.

    Also, sometimes the anxiety caused when someone you love is sick, and there is nothing you can do about it, comes across as anger. Some people take that to mean that they are inadequate. Still, others cannot tolerate what they don't understand. In any case, it't not your fault.

    I know their attitude is hard to bear. You are not alone in going through this. I'm sure you will get lots of good ideas on how to cope, from the people here. As for me, I had to physically remove myself from the area where my family live, on the advice of my Dr., and it had nothing to do with their lack of understanding - it was for my health, so I don't hear much of it. I get it second hand, and I try to dismiss it, even though it hurts.

    Good luck. Remember we are here, and we understand.
    Merry Christmas.
    Big hugs,
    Terry