Monkeykat and Marta608

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Apr 22, 2007.

  1. mezombie

    mezombie Member

    Oh, thank goodness the two of you are so articulate! I was once upon a time (published author and speaker), but those skills seem to be on hold right now,lol.

    Monkeykat: Thanks for your supportful addition to my "CFS/ME: Relapse" thread. I particularly liked the following part of your post:

    "I can be severely ill and bedridden with CFS and want to go for a walk with my husband. I can't even get up to go to the bathroom and yet my mind WANTS to go do something.

    Exercize makes someone with severe CFS much worse and not better. if you cannot perform hygeien and basic activities of daily living you have to start there. And do what you are able. Then and only then can you even begin to think about exercize and it has to be something that doesn't stress the body."

    I am so happy to hear you will be interviewed for a newspaper story on CFS! You clearly know how to convey what needs to be conveyed.

    Marta608: I, too, find the post Monkeykat would like to use for her interview fabulous. I know you are still doing poorly, but have you considered giving media interviews sometime in the future? If you're not up to contacting the media, the CFIDS Assoc. can coordinate this for you. They are always looking for people like you.

    Monkeycat and Marta608: I NEED YOUR HELP!

    You both picked up that I was trying to raise AWARENESS on this board about severe CFS, esp. exercise and CFS. Unfortunatly, my ability to find the right words is one of the casualtis of my CFS.

    I would like to retitle my thread, so more people who are unfamiliar with the impact of exercise on CFS will read it and hopefully learn something.

    I've come up with a few ideas:

    Do you know what exercise does to people with CFS?

    CFS and exercise: What are the risks?

    Why exercise can be harmful to people with CFS

    Well, I had more ideas, but my short term memory is shot so of course I can't remember them, lol. And I woke up with a mild migraine, gone for now, but don't want it to come back, so must go for now.

    I would greatly appreciate any suggestions on retitling you may have!

    Thank you (for your support, speaking out, and just being here)!

    Hugs,
    The Zombie

    P.S. OK, I went ahead and changed the title, but I can always change it again. I also edited the firt post a bit. Any other ideas as to how to make this thread an awareness piece for board members?
    [This Message was Edited on 04/22/2007]
  2. monkeykat

    monkeykat Member

    Hi MeZombie,

    Oh, I have to say, "I really love your name". LOL. I have been telling people for a while that I feel like I am the living dead and your name says it all. Truly. We are zombies.

    I'm so proud of you for raising AWARENESS on this board. i've had people with CFS who are more mild say really stupid things to me b/c they have no clue what it's like to be in the 3rd stages of this illness.

    You are very articulate as well. I loved your post. I didn't know you were a published author and speaker. that's fantastic. What did you publish? And were did you speak??? I hope as well that you get your abilities back.

    I know that I hope for that as well for me and everyone. When I think about it too much it makes me really sad. I try to connect with the suffering of everyone on this board since I know I'm not alone and many, many people are suffering horribly. I try to remember what things I can be thankful for each day b/c it's so easy to focus on all my losses and want to get depressed. Thankfulness really helps me keep out of depression some...not always...but many times.

    It's funny b/c I don't appreciate anything that I say. I'd have to go back to your post to remember what I liked about what you said but I was very touched by your post. It really made me "feel".

    You have done a great job starting the post on raising AWARENESS about exercise and CFS and how damaging it is to our bodies.

    I like the title "Why EXERCISE is HARMFUL to people with CFS"

    I think that one is great!!!!

    Thank you so much for raising awareness even on this board!!!

    I am not doing well today so I will have to try to think about your question, "how else to raise awareness".

    Keep Hope Alive, Monkeykat
  3. mezombie

    mezombie Member

    Thanks! We seem to have a mutual fan club going on!

    Like you, I try not to focus on the losses. I know I still have a lot to be grateful for, and I try to think of that even when I'm at my sickest.

    This message board has been very helpful to me in many ways. Most important, I know I'm not alone.

    I did change the title again, but received a bit of a flame from someone. I replied in a respectful manner. But I do wonder if the title shouldn't be changed again (maybe even back to its original "CFS/M.E.: I'm in a relapse and this is what that means"). I just find the phrasing awkward, but don't know how to fix it.

    I love your slogan, "Keep Hope Alive!"

    You bet!

    The Zombie
    [This Message was Edited on 04/22/2007]
  4. mezombie

    mezombie Member

    Where are you?

    How are you?

    I haven't seen you posting, so I'm getting worried. I know you're still in a relapse. I hope it hasn't gotten worse?

    BTW, I remember you mentioned that you had to do everything yourself. I live alone as well, but am now taking advantage on-line ordering and delivery from a local grocery chain. Might something like that be available to you?

    Hugs,
    The Zombie
  5. Marta608

    Marta608 Member

    Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz. I'm still feeling very poopy but thank you for asking. And thank you for your kind words. I can't imagine doing more than occasional writing which I find possible and helpful every now and then and I actually used to do a lot of public speaking!

    Someone on this board (forgot who, sorry) suggested those of us with CFS help each other, like picking up something from the grocery store on our better days for those who're having a bad day. I've been trying to think of a way to find out if there are others with this illness in my area without having to publish my phone number. I went so far as to buy a Tracfone on a good day but now I'm too tired to understand the directions. I'm actually laughing at this. I guess we must.

    I'm very glad to hear from you, Zombie. You had me worried there for awhile and yet I know that feeling so well. Are you bedder?? How did you get that way, do you know?

    That a person could feel so ill and still be living - and even recover enough in a day or two to stagger to the grocery store - simply amazes me! If it wasn't so horribly frustrating and sad, I'd be fascinated but I wouldn't have believed it either if I wasn't affected. I don't blame people for not understanding but it hurts, doesn't it? Especially from "our own" here. It is simply incomprehensible.

    As for having groceries delivered, OH, how I wish I could, but there is no grocery delivery here where I live. I spend at least one day mostly lying down, then try to do one or two little things the following morning. Scheduling is so important! If I have an appointment on, say, Tuesday, I must plan nothing Monday or Wednesday except the basics at home (feed me; feed cat; brush teeth - mine -lol.) One appointment takes, in essence, three of my days and forget the evenings completely because I must be in bed no later than 8:00. I know you know what I mean but you might want to use this example in your awareness message.

    I'm feeling sad that I might have to give up going to the shelter for the measly two hours I try to volunteer a week. It helped me feel useful and that's important.

    Prickles has done an amazing job of FM awareness. Too bad we're too exhausted to do as much as she has with ME/CFS. You're doing a good job here, Zombie. I'm with 'ya even when I'm not posting.

    Here's to us! Let's keep in touch, OK? A weekly note if we can remember. We could even call it something and post regularly like The Porch posts if you want to, just for those with CFS. What do you think? Regardless, I'm happy to find your support and friendship here.

    Hugs all around,
    Marta

  6. Marta608

    Marta608 Member