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Letter to Those Without Ms
I found this recently & thought it did a good job explaining what we all go through on this roller coaster (dx'd or not). I printed off a copy & gave it to my family hoping it would help them better understand. I hope this helps you all too!! Love you all!! God bless you!!
An Open Letter To Those Without MS
Having MS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
___________________________________
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day sitting on my arse, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about stuff and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
___________________________________
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
___________________________________
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
___________________________________
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what this kind of illness does to you.
___________________________________
Please understand that MS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
___________________________________
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. MS may cause secondary depression (wouldn't you get depressed if you were stuck inside for ages on end!?) but it is not created by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - don't you think that if I could possibly do it that I would?
___________________________________
Please understand that if I say I have to sit down/pee/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). MS does not forgive.
___________________________________
If you want to suggest a cure to me, DON'T. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with MS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would KNOW.
___________________________________
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously.
___________________________________
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out, I need you to shop for me, I need you to cook and clean for me, I need you to take me the the doctors, sometimes I need you to support me so I can walk to the bathroom without falling over.
I need you on a different level too ... you're my link to the outside world, if you don't set up my recliner in the lounge-room I can't watch TV and if you don't bring home a newspaper I can't read it. If you don't come to visit me then I won't get to see you.
... and, as much as it's possible, I need you to understand me.
___________________________________
An Open Letter To Those Without MS
Having MS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
___________________________________
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day sitting on my arse, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about stuff and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
___________________________________
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
___________________________________
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
___________________________________
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what this kind of illness does to you.
___________________________________
Please understand that MS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
___________________________________
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. MS may cause secondary depression (wouldn't you get depressed if you were stuck inside for ages on end!?) but it is not created by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - don't you think that if I could possibly do it that I would?
___________________________________
Please understand that if I say I have to sit down/pee/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). MS does not forgive.
___________________________________
If you want to suggest a cure to me, DON'T. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with MS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would KNOW.
___________________________________
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously.
___________________________________
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out, I need you to shop for me, I need you to cook and clean for me, I need you to take me the the doctors, sometimes I need you to support me so I can walk to the bathroom without falling over.
I need you on a different level too ... you're my link to the outside world, if you don't set up my recliner in the lounge-room I can't watch TV and if you don't bring home a newspaper I can't read it. If you don't come to visit me then I won't get to see you.
... and, as much as it's possible, I need you to understand me.
___________________________________
I have a mother who thinks its all in my head & I just need more will power. I worked through a bad back & other illnesses but all the willpower I can muster up don't seem to help when I'm at my worst with this!! I have heard thousands of herbal remedies, exercises ect. So I know what you mean with that too. I know for me ( I bet most of you also) I was very determined, active, & hardworking person who couldn't sit still. It seems like someone that knows you would realize that you don't just quit being that person all at once unless somethings wrong!! God bless you all & Glad you liked it as much as me!
What a terrific letter! I am saving it as a text file and will send out pieces of it as needed.
Especially to my mother who says oh just snap out of it! Really and truly, if she only knew how hard I have tried to just snap out of it! LOL I did that for years until I finally got a dx and realized MS was NOT all in my head. Now people need to know that! I love the wording of these snippets and will they ever come in handy in the future. Thanks for posting the letter.
A bit off topic.. but have y'all ever had someone say "Oh you look JUST wonderful! I would just kill for your body!" ( I am thin, fit and look 20 years younger than my age) My response is " I would kill to give it to you! " One day in my body and everyone would kill to give it back, and give it back fast! I guess I should be really bothered by the remark, but I have learned to let it go. After all, its hard to look great and feel great at the same time! Like you cannot have the cake and eat it too. LOL
Especially to my mother who says oh just snap out of it! Really and truly, if she only knew how hard I have tried to just snap out of it! LOL I did that for years until I finally got a dx and realized MS was NOT all in my head. Now people need to know that! I love the wording of these snippets and will they ever come in handy in the future. Thanks for posting the letter.
A bit off topic.. but have y'all ever had someone say "Oh you look JUST wonderful! I would just kill for your body!" ( I am thin, fit and look 20 years younger than my age) My response is " I would kill to give it to you! " One day in my body and everyone would kill to give it back, and give it back fast! I guess I should be really bothered by the remark, but I have learned to let it go. After all, its hard to look great and feel great at the same time! Like you cannot have the cake and eat it too. LOL
Great letter. My mom, trying to be helpful, keeps trying to figure out an exercise I can do.
She suggested yoga. Maybe some with MS could do yoga but it would not work for me.
I live in a split level and it is very difficult having to go up and down the steps. My mom keeps telling me not to quit doing it.
I drag myself, pull myself. The suggestions don't make me feel better.
However I have found that being in a swimming pool is wonderful! Love It!!
LA MS dx'd 2008
She suggested yoga. Maybe some with MS could do yoga but it would not work for me.
I live in a split level and it is very difficult having to go up and down the steps. My mom keeps telling me not to quit doing it.
I drag myself, pull myself. The suggestions don't make me feel better.
However I have found that being in a swimming pool is wonderful! Love It!!
LA MS dx'd 2008
The bit about the cure really hits home.
How many of us have had people suggest a miracle cure/diet/plan/pill/supplement etc etc? At first, in the early days, you eagerly rush find out about it, as time goes on you try to find a way to say no without them thinking that you are not willing to try and help yourself.
Mand
How many of us have had people suggest a miracle cure/diet/plan/pill/supplement etc etc? At first, in the early days, you eagerly rush find out about it, as time goes on you try to find a way to say no without them thinking that you are not willing to try and help yourself.
Mand
Wow! you have no idea, or maybe you do too. In-fact I KNOW YOU DO KNOW, how important this letter is.I have printed it off of your post and intend to send copies to my three sisters and my dear Mom.
Tammy Thank You again for posting it on our forum..
I hope life gets a bit easier on your terms, if you follow my meaning.
Sending you hugs filled with loads of love{{{{~!~}}}
I am hoping you get to have a restful night.....DJ
Tammy Thank You again for posting it on our forum..
I hope life gets a bit easier on your terms, if you follow my meaning.
Sending you hugs filled with loads of love{{{{~!~}}}
I am hoping you get to have a restful night.....DJ
*if something worked we would KNOW*
I loved this line - there are enough MSers on line here and on all the other sites networking that a cure for one of us would spread like wild fire. We are not the victims of any conspiracy other than our body sabotogueing us!
thanks for the great letter Tammy/
as always,
Lulu
I loved this line - there are enough MSers on line here and on all the other sites networking that a cure for one of us would spread like wild fire. We are not the victims of any conspiracy other than our body sabotogueing us!
thanks for the great letter Tammy/
as always,
Lulu
Thank you for posting this I am going to print it off for my Family members and send it out to each one of them... Hopefully it will put an end to the dumb things they say and think,,,
Love & Hugs {{{~!~}}} DJ
Love & Hugs {{{~!~}}} DJ
Your so welcome! Fell free to copy it & print it out, that why I put it on hoping it would help those close to us understand!
Now if I could just email this to my brothers and other family that think im just fakeing this MS thing boy this litter would be like a smack in the face of wiseness and now do you have a CLUE as to what im going through on a daily base and by the way this is not me doing nothing all day its me saveing my eneragy to climb up those 18 flipping staires to say prayers and good nights and tuck my babies in at night then crawl into bed sometimes litterly and hope i sleep with out pain or the legg jumpies all night
thanks for this letter boy it hits the spot on what we MS ers go through THANK YOU !!!!
thanks for this letter boy it hits the spot on what we MS ers go through THANK YOU !!!!
DITTO!
I can't put jack into words these days, can write them down, but takes awhile.
Certainly couldn't have put it in words this well.
thx
I can't put jack into words these days, can write them down, but takes awhile.
Certainly couldn't have put it in words this well.
thx
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