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Replies to '05/30 Ask the Authors'
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May 31, 2007, 4:47 pm PDT
 Quote From: 2tfruitie Thank you SO much for your response to what I would call an unrealistic message/comment. It is NOT that easy for ALL people who have a dibilitating disease. I was dx'd with MS a year ago (but my Neuro thinks I've had it for approx 7 years) - I do my best to keep a "positive" attitude. However, when I cannot get out of bed, I cannot take care of my children, cannot follow thru with plans I have made because I am SO tired & weak... I realize that I DO have MS, it's NOT going away, and NOT every day is going to be easy. As a matter of fact, most of us have far more BAD days than good. Putting on the "Happy MS Face" does not give me energy or make me feel better physically OR emotionally. Trust me - Given a choice, I would certainly choose to be the happy energetic woman I was several years ago!!
So for me to read how "remaining positive" and "just accepting the disease" is going to get us thru each day - really pissed me off! I agree with you in regard to how wonderful it is for those who can cope with their disease so very well and Kudos to them, really!! Maybe I'm simply jealous because my Happy MS Face never takes away the pain, fatigue, tingling & numbness, most importantly the constant wondering when the day will come where I will need a wheelchair in order to get around?! Yes, that may sound negative to others, but to me it is a reality and something that someday I WILL have to deal with. So, for today - I will keep my Happy MS Face on, just so others won't have to deal with how miserable I feel inside and/or out, but that certainly doesn't make it "easier".
Anyway, you're probably wondering why I replied to YOUR message rather than to hers... The truth is that I was too mad at the time to reply directly to hers and didn't want to insult what she may consider to be her intelligence?! lol Thanks for listening!! ;) I totally agree with you! Just wanted to quote you and give you some support. We were on the msworld message board talking about this very thing!! I loved Dr phils show BUT I would love for SOMEONE to do a show about what its REALLY like to live with MS! I know some people do great BUT there are many of us out there suffering. We get treated like crap from MANY dr's and dont get good treatment because of insurance companies. I found a wonderful dr because I would not give up, but I hear it everyday. Also I would like to see someone do a show about how we struggle. I am sick of hearing someone say "well so and so on tv was doing so great, why arent you?" OR "so and so I saw on tv .....fill in blank" I dont want them to do a horror show and scare people, but show the reality some of us live with SO that other people can understand better what we live with. Its hard when people say "well you look normal" or " just get up and walk". Or my fav "I have MS. MS doesnt have me" Well that is great but many of us living with MS KNOWS MS HAS US! Our attitude DOES make all the difference in the world. Everyone should have a possitve attitude (about life in general) BUT we are also realistic. If MS didnt have me I would just get up and walk or run or play with my kids, but there are days I cant do that. Anyway, just wanted to share my 2 cents (worth only 1). Dr phil I would love for you to do a whole show on MS and dont just show people with MS who can run marathons. Show REAL people living with a REAL disease! I am all for encouraging others, but lets not forget the rest of us! Anyone who has ms PLEASE check out this board. You will find awesome support. Its for people living with MS and family who support them!! www.msworld.org (there is a chat and message board and also great information!!) |
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May 31, 2007, 5:49 pm PDT
Quote From: 2tfruitie Thank you SO much for your response to what I would call an unrealistic message/comment. It is NOT that easy for ALL people who have a dibilitating disease. I was dx'd with MS a year ago (but my Neuro thinks I've had it for approx 7 years) - I do my best to keep a "positive" attitude. However, when I cannot get out of bed, I cannot take care of my children, cannot follow thru with plans I have made because I am SO tired & weak... I realize that I DO have MS, it's NOT going away, and NOT every day is going to be easy. As a matter of fact, most of us have far more BAD days than good. Putting on the "Happy MS Face" does not give me energy or make me feel better physically OR emotionally. Trust me - Given a choice, I would certainly choose to be the happy energetic woman I was several years ago!!
So for me to read how "remaining positive" and "just accepting the disease" is going to get us thru each day - really pissed me off! I agree with you in regard to how wonderful it is for those who can cope with their disease so very well and Kudos to them, really!! Maybe I'm simply jealous because my Happy MS Face never takes away the pain, fatigue, tingling & numbness, most importantly the constant wondering when the day will come where I will need a wheelchair in order to get around?! Yes, that may sound negative to others, but to me it is a reality and something that someday I WILL have to deal with. So, for today - I will keep my Happy MS Face on, just so others won't have to deal with how miserable I feel inside and/or out, but that certainly doesn't make it "easier".
Anyway, you're probably wondering why I replied to YOUR message rather than to hers... The truth is that I was too mad at the time to reply directly to hers and didn't want to insult what she may consider to be her intelligence?! lol Thanks for listening!! ;) Believe u me!!! I am married with 2 kids. No one understands the craziness of MS unless they have been through it! My husband tries to be supportive of me, my daughter rejects the idea that I have this gaud awful disease, my son tries and is very supportive of me and is always curious about where I'll have to give my next injection. I didn't order this life but I'm getting very good at living with it. I also feel that I am faking a happy face because I am on lots of days but I do still have a few good days with truthful happy smiles. I'll try to smile and cry for you and hope that they quickly come up with a cure for MS. |
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June 1, 2007, 4:34 am PDT
Quote From: 2tfruitie Thank you SO much for your response to what I would call an unrealistic message/comment. It is NOT that easy for ALL people who have a dibilitating disease. I was dx'd with MS a year ago (but my Neuro thinks I've had it for approx 7 years) - I do my best to keep a "positive" attitude. However, when I cannot get out of bed, I cannot take care of my children, cannot follow thru with plans I have made because I am SO tired & weak... I realize that I DO have MS, it's NOT going away, and NOT every day is going to be easy. As a matter of fact, most of us have far more BAD days than good. Putting on the "Happy MS Face" does not give me energy or make me feel better physically OR emotionally. Trust me - Given a choice, I would certainly choose to be the happy energetic woman I was several years ago!!
So for me to read how "remaining positive" and "just accepting the disease" is going to get us thru each day - really pissed me off! I agree with you in regard to how wonderful it is for those who can cope with their disease so very well and Kudos to them, really!! Maybe I'm simply jealous because my Happy MS Face never takes away the pain, fatigue, tingling & numbness, most importantly the constant wondering when the day will come where I will need a wheelchair in order to get around?! Yes, that may sound negative to others, but to me it is a reality and something that someday I WILL have to deal with. So, for today - I will keep my Happy MS Face on, just so others won't have to deal with how miserable I feel inside and/or out, but that certainly doesn't make it "easier".
Anyway, you're probably wondering why I replied to YOUR message rather than to hers... The truth is that I was too mad at the time to reply directly to hers and didn't want to insult what she may consider to be her intelligence?! lol Thanks for listening!! ;) Thank you for your response. I must say though, that I have two distinct advantages in that I am married to an RN and I have my own medical problems to deal with. From my own experience, I'd say that, while there are days when I can act as if nothing is wrong, there are more days when it will get the best of me. So that "happy face" becomes the lie that it truly is and people can either accept me as I am or more on down the road.
Now, thank YOU for listening. lol |
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