duttin
08-05-2006, 01:43 AM
Frustrated beyond belief.
My visual perception is off or something.When walking at night or in the dark,I'm losing my balance.I'm fine in a well lit area,I stagger side ways and fall.Tonight at are street festival I was walking my daughter home and there I went.DOWN.I felt like a FOOL.A sheriff tried to make me do a sobriety test.Heck, I couldn't walk a straight line in the day light.I tried to explain I had MS and I wore leg braces that it was impossible.He stated everyone has an excuse.My 11 year old finally convinced him.He was a jerk.
Earlier in the day had to attend an out door event for my 17 year old and the sun was hot.My hands went numb,I couldn't hold anything,I had no control over them.Once I got in the air conditioning,cooled off I regained use of them.
Tomorrow is our parade and I have to attend.My daughters in it.I feel like I'm letting my children down.What should be family fun,is turning into a disaster.I know my little one was embarrassed,but to polite to say anything.
I have a neuro appointment next week,maybe he has some answers,but I'm sick of being kicked on my butt.I've tried not to let this disease get the best of me .But these new symptoms , bizzare as they maybe are getting me.
Just needed to vent
Toni
My visual perception is off or something.When walking at night or in the dark,I'm losing my balance.I'm fine in a well lit area,I stagger side ways and fall.Tonight at are street festival I was walking my daughter home and there I went.DOWN.I felt like a FOOL.A sheriff tried to make me do a sobriety test.Heck, I couldn't walk a straight line in the day light.I tried to explain I had MS and I wore leg braces that it was impossible.He stated everyone has an excuse.My 11 year old finally convinced him.He was a jerk.
Earlier in the day had to attend an out door event for my 17 year old and the sun was hot.My hands went numb,I couldn't hold anything,I had no control over them.Once I got in the air conditioning,cooled off I regained use of them.
Tomorrow is our parade and I have to attend.My daughters in it.I feel like I'm letting my children down.What should be family fun,is turning into a disaster.I know my little one was embarrassed,but to polite to say anything.
I have a neuro appointment next week,maybe he has some answers,but I'm sick of being kicked on my butt.I've tried not to let this disease get the best of me .But these new symptoms , bizzare as they maybe are getting me.
Just needed to vent
Toni
Sponsor
Blessed4Life
08-05-2006, 02:25 AM
Hey, Toni
I'm sorry to hear that you had such a rough day. Because of these boards I am reminded that no matter how bad I feel that it could be worse. I have an idea that may work. Since it's a parade, is it on a major street like downtown where there are lots of stores? Maybe you can stay inside an airconditioned store until just before your daughter's section of the parade goes by? You'll need a look out but at least your body will be cool enough when you come out that your muscles and nerves will hopefully act right. You'll feel better and she'll feel better knowing that you are enjoying her performance and not distracted by your body. Hope this helps! Just a suggestion. Maybe someone else has something better. :wave:
Michelle
I'm sorry to hear that you had such a rough day. Because of these boards I am reminded that no matter how bad I feel that it could be worse. I have an idea that may work. Since it's a parade, is it on a major street like downtown where there are lots of stores? Maybe you can stay inside an airconditioned store until just before your daughter's section of the parade goes by? You'll need a look out but at least your body will be cool enough when you come out that your muscles and nerves will hopefully act right. You'll feel better and she'll feel better knowing that you are enjoying her performance and not distracted by your body. Hope this helps! Just a suggestion. Maybe someone else has something better. :wave:
Michelle
StephanieAnne
08-05-2006, 03:00 AM
Hi Toni
WOW you have a busy weekend ahead of you, what about an umbrella to help shade you? and do have one of those neck coolers? wear that and use the umbrella and see how you feel, maybe it will enable you to stay longer
You are a great person/Mom to go and attend the parade and festivities and support your kidd, you are doing what you can, and that is commendable :)
We do what we can, and rest when we have to, just listen to your body, it will tell you when to stay at home
Hope you can enjoy your weekend and stay away from the cops will ya ;)
WOW you have a busy weekend ahead of you, what about an umbrella to help shade you? and do have one of those neck coolers? wear that and use the umbrella and see how you feel, maybe it will enable you to stay longer
You are a great person/Mom to go and attend the parade and festivities and support your kidd, you are doing what you can, and that is commendable :)
We do what we can, and rest when we have to, just listen to your body, it will tell you when to stay at home
Hope you can enjoy your weekend and stay away from the cops will ya ;)
Barbbelle
08-05-2006, 08:53 AM
Hi Toni!
Boy, I can relate! And all that we want to do is go have fun, enjoy the sun and hang out like everyone else...........I know that the heat has alot to do with it. You have been given great ways to beat the heat, so I won't go there, but what about a wheelchair? You may be able to borrow one for today. I know it is embarrassing, but it really saves energy. My son graduated from college in May and it was really hot. I had to walk a long way and that wasn't going to happen. The chair took a while to get used to, with the stares and all, but it was great to have energy to spare! You don't have to use it all the time, but just for "special" occasions when you know that you need it. Or if nothing else, drive as close as you can and take a chair to SIT!
As far as the cop, maybe you should send him some info on MS. People can be so incredibly rude, but for every rude one there are about 50 door holding, grocery carrying, smiling, caring other ones out there. I have to keep reminding myself of this everyday!
You have been such a positive person on this board and I'm sorry that you had a horrible day. Sometimes, horrible days make me so grateful to wake up to a better day! Hang in there and be smart in the sun!!!!!!!!!!!!!!! :blob_fire Take care! Barb
Boy, I can relate! And all that we want to do is go have fun, enjoy the sun and hang out like everyone else...........I know that the heat has alot to do with it. You have been given great ways to beat the heat, so I won't go there, but what about a wheelchair? You may be able to borrow one for today. I know it is embarrassing, but it really saves energy. My son graduated from college in May and it was really hot. I had to walk a long way and that wasn't going to happen. The chair took a while to get used to, with the stares and all, but it was great to have energy to spare! You don't have to use it all the time, but just for "special" occasions when you know that you need it. Or if nothing else, drive as close as you can and take a chair to SIT!
As far as the cop, maybe you should send him some info on MS. People can be so incredibly rude, but for every rude one there are about 50 door holding, grocery carrying, smiling, caring other ones out there. I have to keep reminding myself of this everyday!
You have been such a positive person on this board and I'm sorry that you had a horrible day. Sometimes, horrible days make me so grateful to wake up to a better day! Hang in there and be smart in the sun!!!!!!!!!!!!!!! :blob_fire Take care! Barb
duttin
08-05-2006, 01:54 PM
Thanks lady's,
Barbelle,I have thought of a wheel chair,but they don't move fast enough,mine would need a jet engine(lol) or my son would push me in the line of traffic,he has a warped sense of humor.
Parade route is one street over,hopefully the sun will hide for it.I"ll take a chair.Tonight my 15 year old son and 17 year old are running the 3 mile road race.Thats after the sun goes down,gotta be there for that,my son a football player,my daughter a cross country runner,I think a little family competivness is in the workings.
StephanieAnne,my daughter is in the first part of the parade,festival queen court,formal gown and all.So if the heat is over whelming,I can leave.But I love the parades.
As far as the cops,I'd like to educate them but I don't think they would appreciate it(lol).They are very young,wait until they turn 40 and there body goes to heck.
I do have an umbrella,I don't have a neck cooler,I kinda thought of a wet t-shirt,but that may get me arrested for sure(lol)
Even though this disease frustrates me I guess I still have my sense of humor intact.
Blessed 4 life,I realize that their are others much worse,I just want my to be able to function when I need to the most.I want to be able to sit through Friday night football games,stand at saturdays crosscountry meets.I have one out of school and the next couple of years are going to go quick and I want and need to be there for it all.Maybe it will be short.
Toni
Barbelle,I have thought of a wheel chair,but they don't move fast enough,mine would need a jet engine(lol) or my son would push me in the line of traffic,he has a warped sense of humor.
Parade route is one street over,hopefully the sun will hide for it.I"ll take a chair.Tonight my 15 year old son and 17 year old are running the 3 mile road race.Thats after the sun goes down,gotta be there for that,my son a football player,my daughter a cross country runner,I think a little family competivness is in the workings.
StephanieAnne,my daughter is in the first part of the parade,festival queen court,formal gown and all.So if the heat is over whelming,I can leave.But I love the parades.
As far as the cops,I'd like to educate them but I don't think they would appreciate it(lol).They are very young,wait until they turn 40 and there body goes to heck.
I do have an umbrella,I don't have a neck cooler,I kinda thought of a wet t-shirt,but that may get me arrested for sure(lol)
Even though this disease frustrates me I guess I still have my sense of humor intact.
Blessed 4 life,I realize that their are others much worse,I just want my to be able to function when I need to the most.I want to be able to sit through Friday night football games,stand at saturdays crosscountry meets.I have one out of school and the next couple of years are going to go quick and I want and need to be there for it all.Maybe it will be short.
Toni
DOXYGUY
08-05-2006, 08:07 PM
nuffs3-
Boy, can I relate. The heat is an ongoing problem for anyone with MS. Go on line and get a cooling vest and/or a cooling hat. These things are very helpful. Already you've gotten great advice for the parade. Can't anyone else push the wheelchair besides your son with the warped sense of humor. I know the feeling that you are letting someone down. But you must do what it takes or you be letting yourself down. The cop sounds like a jerk. Despite your misgivings call them, educate them as well as reporting this moron with the badge. You need to understand your limitations. More so your family needs to understand them as well as make adjustments. Things like heat, balance and just plain difficulties are going to be part of your life from now on. I hope you and your family make the best of it. Try not to let things get to you. Attitude is extremely important for your well-being. Write again with any updates. Good Luck.
Boy, can I relate. The heat is an ongoing problem for anyone with MS. Go on line and get a cooling vest and/or a cooling hat. These things are very helpful. Already you've gotten great advice for the parade. Can't anyone else push the wheelchair besides your son with the warped sense of humor. I know the feeling that you are letting someone down. But you must do what it takes or you be letting yourself down. The cop sounds like a jerk. Despite your misgivings call them, educate them as well as reporting this moron with the badge. You need to understand your limitations. More so your family needs to understand them as well as make adjustments. Things like heat, balance and just plain difficulties are going to be part of your life from now on. I hope you and your family make the best of it. Try not to let things get to you. Attitude is extremely important for your well-being. Write again with any updates. Good Luck.
DOXYGUY
08-05-2006, 08:18 PM
nuffs3-
Boy, can I relate. The heat is an ongoing problem for anyone with MS. Go on line and get a cooling vest and/or a cooling hat. These things are very helpful. Already you've gotten great advice for the parade. Can't anyone else push the wheelchair besides your son with the warped sense of humor. I know the feeling that you are letting someone down. But you must do what it takes or you be letting yourself down. The cop sounds like a jerk. Despite your misgivings call them, educate them as well as reporting this moron with the badge. You need to understand your limitations. More so your family needs to understand them as well as make adjustments. Things like heat, balance and just plain difficulties are going to be part of your life from now on. I hope you and your family make the best of it. Try not to let things get to you. Attitude is extremely important for your well-being. Write again with any updates. Good Luck.
08-05-2006 09:54 AM
Boy, can I relate. The heat is an ongoing problem for anyone with MS. Go on line and get a cooling vest and/or a cooling hat. These things are very helpful. Already you've gotten great advice for the parade. Can't anyone else push the wheelchair besides your son with the warped sense of humor. I know the feeling that you are letting someone down. But you must do what it takes or you be letting yourself down. The cop sounds like a jerk. Despite your misgivings call them, educate them as well as reporting this moron with the badge. You need to understand your limitations. More so your family needs to understand them as well as make adjustments. Things like heat, balance and just plain difficulties are going to be part of your life from now on. I hope you and your family make the best of it. Try not to let things get to you. Attitude is extremely important for your well-being. Write again with any updates. Good Luck.
08-05-2006 09:54 AM
MILLSC
08-05-2006, 10:54 PM
Hugs to you and God speed...its terrible to try to look and act "normal" when you feel anything BUT. I think all of us with chronic problems are guilty of trying to distract the negative attention that we end up hurting ourselves in the long run, and as a mother, NO doesn't seem to be a vocabulary word we use often.
millsc
millsc
duttin
08-06-2006, 01:01 AM
Doxyguy,
Oh,I have learned limitations,but when it comes to my kids,theres no limitations.I need to be there.I can't get these years back,this disease has taken enough out of me,its not going to take these special moments.As far as my son pushing me in a wheel chair,he'd do it in a heart beat,I fear his warped humor.My daughters would notice their friends and leave me sit.My attitude is great with this disease,I have MS,it isn't going to have me.
Millsc, I don't say no when it comes to special events,my daughter is going to be a senior this year,this is the last full year with her and she's very active in school,providing my legs keep me up right and my vision don't deteriorate,I plan on being at all these events.I even wore shorts today to the festival,leg braces and all.Not a fashion statements and my kids were all for it.Tomorrow these legs will need a rest.
Oh,I have learned limitations,but when it comes to my kids,theres no limitations.I need to be there.I can't get these years back,this disease has taken enough out of me,its not going to take these special moments.As far as my son pushing me in a wheel chair,he'd do it in a heart beat,I fear his warped humor.My daughters would notice their friends and leave me sit.My attitude is great with this disease,I have MS,it isn't going to have me.
Millsc, I don't say no when it comes to special events,my daughter is going to be a senior this year,this is the last full year with her and she's very active in school,providing my legs keep me up right and my vision don't deteriorate,I plan on being at all these events.I even wore shorts today to the festival,leg braces and all.Not a fashion statements and my kids were all for it.Tomorrow these legs will need a rest.
Kymtnms
08-06-2006, 01:19 PM
Toni,
Hugs to you for all you went through! That sheriff was such a jerk! Are you going to report him? His boss needs to be informed how he treats people! Think we need to wear t-shirts or big pins that say we have MS so if we fall down either leave us alone or help us up. It's amazing how many people have no idea what MS is or what it involves! The public really needs to be educated especially law enforcement.
Hope you are able to work out a way to see the parade without standing out in the heat. The heat is really getting to everyone. Now I know why they call this the "dog days of summer", not even the dog wants to do anything. :)
Hang in there!
Lynne
Hugs to you for all you went through! That sheriff was such a jerk! Are you going to report him? His boss needs to be informed how he treats people! Think we need to wear t-shirts or big pins that say we have MS so if we fall down either leave us alone or help us up. It's amazing how many people have no idea what MS is or what it involves! The public really needs to be educated especially law enforcement.
Hope you are able to work out a way to see the parade without standing out in the heat. The heat is really getting to everyone. Now I know why they call this the "dog days of summer", not even the dog wants to do anything. :)
Hang in there!
Lynne
linnytoz
08-06-2006, 08:11 PM
Thanks for venting. My wife is having all of the same problems and this awfully hot summer has made things worse. If anyone can please offer some words of encouragement directly to her...it would be greatly appreciated! Please write directly to her at linnytoz@comcast.net . Please put MS help in the subject line. Her name is Linda. Thanks, Rodger
duttin
08-07-2006, 12:39 AM
Lynne,
I've realized that there's many idiots in our society that has no clue what MS is.They think just because you look good your doing good.
No,I'm not going to report the sheriff,they'll just say he was doing his job.That morron must of thought the leg braces were a fashion statement.I really think the disability act should step in and have the law enforcement come up with a different sobriety test.
The parade was great,sat under a tree and it was cool.But like an idiot went to the festival afterwards in the heat and my hands are still numb 24 hours later.But I had a great time.I quess its a price I have to pay,the quality time my youngest daughter and I had was worth it.
Toni
I've realized that there's many idiots in our society that has no clue what MS is.They think just because you look good your doing good.
No,I'm not going to report the sheriff,they'll just say he was doing his job.That morron must of thought the leg braces were a fashion statement.I really think the disability act should step in and have the law enforcement come up with a different sobriety test.
The parade was great,sat under a tree and it was cool.But like an idiot went to the festival afterwards in the heat and my hands are still numb 24 hours later.But I had a great time.I quess its a price I have to pay,the quality time my youngest daughter and I had was worth it.
Toni