Sick Of It All - Multiple Sclerosis Message Board

duttin · 08-04-2006, 10:43 PM

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

Blessed4Life · 08-04-2006, 11:25 PM

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.

Michelle

StephanieAnne · 08-05-2006, 12:00 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

Barbbelle · 08-05-2006, 05:53 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!!!!!!!!!!!!!!!

Take care! Barb

duttin · 08-05-2006, 10:54 AM

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