twink65
08-28-2007, 01:23 PM
Hi everyone
I was wondering if you ever have these kinds of feelings and emotions. I am just coming out of a very bad 4 month relapse. Last week I was using my cane I never went to the store. When I went to church I looked terrible having to hold onto people etc. And now? It's like overnight ! I woke up this morning and I felt stronger... better...then I have in weeks. It's like so sudden I am embaressed. I live in a small town everyone knows me unfortunatley and they are always smothering me with their pity for me. Now? Im almost embaressed because I can walk better. Do you ever worry too much about what people think? I worry people think I am faking my illness and Im nutzz ! I sure would appreciate your comments and how to deal with it. The weather changed and sure enough ( REMISSION ) same pattern as the last five years of my life !!! crazy stuff this MS is.... Please share your thoughts
Twink... :)
I was wondering if you ever have these kinds of feelings and emotions. I am just coming out of a very bad 4 month relapse. Last week I was using my cane I never went to the store. When I went to church I looked terrible having to hold onto people etc. And now? It's like overnight ! I woke up this morning and I felt stronger... better...then I have in weeks. It's like so sudden I am embaressed. I live in a small town everyone knows me unfortunatley and they are always smothering me with their pity for me. Now? Im almost embaressed because I can walk better. Do you ever worry too much about what people think? I worry people think I am faking my illness and Im nutzz ! I sure would appreciate your comments and how to deal with it. The weather changed and sure enough ( REMISSION ) same pattern as the last five years of my life !!! crazy stuff this MS is.... Please share your thoughts
Twink... :)
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moore170
08-28-2007, 03:45 PM
That is the way of life with MS. Thankfully you have gotten a remission. Hopefully for good. If people think you are faking they just don't understand MS. As long as your friends/family understand, I wouldn't worry about the others. The National MS Society has some very good pamphlets that explain the unpredictability of MS well. If you go on their website you can order them.
Candy
Candy
MSNik
08-28-2007, 04:02 PM
I agree with Candy that this is the way it is with MS, very unpredictable and you can never tell what is next or when it will hit. In this case, I would consider it a blessing and roll with it!:)
You need to not worry about what others think. Small town, or Small minds, even if you lived in New York City, there would still be people who would judge you because you walked with a cane or needed a wheelchair or had a seeing eye dog. People are people and its not your responsiblity to worry about what they think of you! ON the other hand, Candy is also right. There are alot of good phamphlets available which you might want to give to your close friends and family helping to explain what it is you are dealing with! As for the church people, if this means alot to you, ask to speak out loud one day- tell people about MS and EDUCATE them on the disease. Youll be doing all of us a favor by doing so....and at the same time, an element of privacy comes into play here. I choose to be a very private person who doesnt like to tell people about my MS, so when I do relapse, and do walk funny, I choose to hibernate, and only tell those who are closest to me. Only my boss knows at work, and I can be honest with him and tell him when I need to take off, and why! You have to decide what is important to YOU. You also need to realize that people DO NOT UNDERSTAND the disease, and probably do wonder, and if you can live with "let them wonder' then fine...but if you cant, then your only option is to educate them. MS IS nothing to be ashamed of....but you dont want people feeling sorry for you thinking things are worse then they are, or terminal, or just plain wondering...
Thank Goodness you are feeling better. Thats great news.
Nikki
You need to not worry about what others think. Small town, or Small minds, even if you lived in New York City, there would still be people who would judge you because you walked with a cane or needed a wheelchair or had a seeing eye dog. People are people and its not your responsiblity to worry about what they think of you! ON the other hand, Candy is also right. There are alot of good phamphlets available which you might want to give to your close friends and family helping to explain what it is you are dealing with! As for the church people, if this means alot to you, ask to speak out loud one day- tell people about MS and EDUCATE them on the disease. Youll be doing all of us a favor by doing so....and at the same time, an element of privacy comes into play here. I choose to be a very private person who doesnt like to tell people about my MS, so when I do relapse, and do walk funny, I choose to hibernate, and only tell those who are closest to me. Only my boss knows at work, and I can be honest with him and tell him when I need to take off, and why! You have to decide what is important to YOU. You also need to realize that people DO NOT UNDERSTAND the disease, and probably do wonder, and if you can live with "let them wonder' then fine...but if you cant, then your only option is to educate them. MS IS nothing to be ashamed of....but you dont want people feeling sorry for you thinking things are worse then they are, or terminal, or just plain wondering...
Thank Goodness you are feeling better. Thats great news.
Nikki
tuckersmom
08-28-2007, 09:36 PM
Twink... they are right about people. I still have family whom I have spent way more time than I care to realize explaining things a hundred times and they still don't get it. I wonder if it's because they don't want to because then they would have to stop judging me. I even had some lady stop me in a grocery store ask if I had been drinking and should I be driving. I was having a particularly bad day and it had taken all I had just to get to the store. I tried to nicely tell her I have MS and some days that's how it is... she looked and me and said "that's a fine excuse" and walked away. I wanted to run over her with the cart! It's hard to not care what others think and it takes practice but it sure does lighten the load.
The only person it should matter to is the one lookin' back at ya' in the mirror. Keep your head up and educate those who will listen and those that won't... you can't do a thing about them.
Lisa
The only person it should matter to is the one lookin' back at ya' in the mirror. Keep your head up and educate those who will listen and those that won't... you can't do a thing about them.
Lisa
parisiancat
08-29-2007, 05:27 AM
This is a crazy disease. If I wasn't living through it, I don't think I'd believe half of it!
I sometimes worry about what people think, when I'm limping down the street. Or when I start to walk alongside a colleague and 'suddenly' develop a limp. But I have to put it out of my head and I try not to think about how I might look. If I did, I would never go anywhere.
It's easier said than done but enjoy being able to walk again! Go and do the things you've missed over the last few months. When you go to church or shopping, maybe you could bring your cane, but lean on it less, so that people realise you've improved but aren't shocked by the overnight improvement ... gradually phase it out? Just a suggestion.
At the end of the day, it's your health that's important, not what strangers think. It's great news that you're in remission.
Cat
I sometimes worry about what people think, when I'm limping down the street. Or when I start to walk alongside a colleague and 'suddenly' develop a limp. But I have to put it out of my head and I try not to think about how I might look. If I did, I would never go anywhere.
It's easier said than done but enjoy being able to walk again! Go and do the things you've missed over the last few months. When you go to church or shopping, maybe you could bring your cane, but lean on it less, so that people realise you've improved but aren't shocked by the overnight improvement ... gradually phase it out? Just a suggestion.
At the end of the day, it's your health that's important, not what strangers think. It's great news that you're in remission.
Cat
lmw510
08-29-2007, 02:09 PM
I was wondering if you did anything to help your self get better or walk better?I have had this limp and balance problem and walking problem for about 6 years but was only dx a year ago and on Avonex for a year and still have not gotten any better. I don't feel like it is working at all. At times I feel worse. I wonder if I should be taking a different medication?:
MSNik
08-29-2007, 08:54 PM
Avonex, Rebif, Copaxone and Betaseron are not designed to help your problems which already existed when you started on them. The purpose of ALL the MS drugs is to prevent new symptoms from starting and show less on the MRI. The damage which was already done, is not going to get better in MOST cases. There are stories though (have hope) that sometimes, a symptom will miraculously stop as quickly as it came on....sometimes, when an excaberation comes on, and a new symptom developes, by taking IV Steroids, you can "nip it in the bud" before it does any real damage, thus is does reverse itself....generally, once the damage is done- its done.
Ive had tingley, numb fingers and hand since the onset of my MS. I started Rebif within one week...the tingley never went away, the pain is chronic, however, not many new symptoms have developed. I have had relpases, where EVERYTHING WENT WRONG. And, I Have had optic neuritis three times, howver each time, I have been put on IV Steriods immediately, and each time, those new symptoms have stopped. IM grateful for that!
Hope this helps..
Nikki
PS. There are some really amazing stories of people on Tysabri and Mitox (used heavily in Canada) where people are regaining all sorts of use of limbs which previously didnt work well- so, with that, I rest my case as far as those drugs go...seems incredible things happen every day! The downside is usually docs WONT prescribe Tysabri until all other meds have been tried and the disease has progressed...even though Tysabri wants them to think of it as a first line of defense...they still arent. The jury is out on why...could be that years ago, Tysabri got such a bum rap..apparently its making a strong comeback these days.)
Ive had tingley, numb fingers and hand since the onset of my MS. I started Rebif within one week...the tingley never went away, the pain is chronic, however, not many new symptoms have developed. I have had relpases, where EVERYTHING WENT WRONG. And, I Have had optic neuritis three times, howver each time, I have been put on IV Steriods immediately, and each time, those new symptoms have stopped. IM grateful for that!
Hope this helps..
Nikki
PS. There are some really amazing stories of people on Tysabri and Mitox (used heavily in Canada) where people are regaining all sorts of use of limbs which previously didnt work well- so, with that, I rest my case as far as those drugs go...seems incredible things happen every day! The downside is usually docs WONT prescribe Tysabri until all other meds have been tried and the disease has progressed...even though Tysabri wants them to think of it as a first line of defense...they still arent. The jury is out on why...could be that years ago, Tysabri got such a bum rap..apparently its making a strong comeback these days.)
mitch512u
08-30-2007, 04:16 PM
Twink,
Candy has it right...those that love you understand, those that don't don't matter.
Candy has it right...those that love you understand, those that don't don't matter.
cocoa76
08-31-2007, 07:06 AM
I was paralysed for a while back in 2001 and some days I was doing great and others I wasnt so good. I was sick of people in church saying how well I was doing at times when I wasnt. I think now in hindsight; some people were just paying me lip service and hadnt noticed whether I was doing good or I wasnt and others genuinely were trying to make me feel better.
In the end, fed up, no money and sick of them all. I bought an inexpensive womans weekly magazine and emailed them all about my condition, how it had changed me, comments people said. I let it all out. Made me feel so much better. They contacted me with prices of how much they would pay me for a photo and to publish the story.
I earned £250 (that was 5 years ago) so prices increase and they arranged for a photographer to travel 400mls from his base to my home to take photographs.
The story was printed a month later and I went to a different church and somebody from my church was there who I didnt really know; she came up to me and said she had read my article and gained so much understanding from the condition and thanked me. By publishing your story your educating people in away that you can do 'on mass' no doubt other people are going through what you are and reading your story will mean so much to them and lift there spirits. It will also show those other people why you have good days and sometimes you dont as well. Really hit home to them!!!
Hey and you get payed for it in the meantime!
Best of luck!!
In the end, fed up, no money and sick of them all. I bought an inexpensive womans weekly magazine and emailed them all about my condition, how it had changed me, comments people said. I let it all out. Made me feel so much better. They contacted me with prices of how much they would pay me for a photo and to publish the story.
I earned £250 (that was 5 years ago) so prices increase and they arranged for a photographer to travel 400mls from his base to my home to take photographs.
The story was printed a month later and I went to a different church and somebody from my church was there who I didnt really know; she came up to me and said she had read my article and gained so much understanding from the condition and thanked me. By publishing your story your educating people in away that you can do 'on mass' no doubt other people are going through what you are and reading your story will mean so much to them and lift there spirits. It will also show those other people why you have good days and sometimes you dont as well. Really hit home to them!!!
Hey and you get payed for it in the meantime!
Best of luck!!