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Posted 8/18/2009 12:45 PM (GMT 0)

So my son came over last night and he was quite upset at the way his anxiety issues are affecting his life.  He was telling me he had to walk off the golf course last week-end because he was dizzy, got the ole tunnel vision and thought he was going to faint.  We both use the same doctor and I suggested he go and ask for something to calm him down.  Then...I made the mistake of telling him I had just gotten a handicap sticker from this doctor.  He looked at me with such amazement..."You aren't telling me you are going to use that, are you?  Walking is GOOD for you...do you know how many people really need those spaces and you are taking up their spot?"  Then he proceeded to remind me I had walked five miles up and down a mountain over the 4th of July.  Yeah, it almost killed me, but I did it.

I told him I had fallen in a parking lot twice last winter trying to push a cart through the slush.  And yes, I usually can walk into a store but when I'm done there are times I can barely get back to the car.  I only see my son once a week due to the 60 hours he works at a high stress job and he doesn't always see me when I am in so much pain I wish someone would shoot me.  Anway, he  put his arms around me and told me he loved me but didn't want me to start losing my independence by giving in to the most basic task...walking.

I have had this sticker for a week and have not used it.  When I asked for it, I told the doc I needed it only for the winter months because my balance is so bad.  When I picked it up, he had given me a permanent one and it was checked. "permanent, disabling arthritic/neurological condition".  The word Permanent made me cry.

Yeah...it's amazing how invisble this disease is and how our own families(and friends) can be oblivious to what it does to our bodies.  One day you can climb a mountain, the next you can't get off the toilet.  I know this problem has been discussed et nauseum on our forum.  But now I am  sad, and realize just how many people don't get it...I have had this for more than twenty years.  My own son...how really, really sad.  I would never misuse this sticker.  If I can walk ...I will.

Thanks for all of you on this forum that understand.  Sometimes I think you all are the only ones that do.

Huggies

Donna

Posted 8/18/2009 12:57 PM (GMT 0)
You are not giving in. You are making it possible to keep going. I'm proud of you.

I have yet to tell my kids that I have a cane. I'm afraid of the same response that you got. But you are helping me to be brave. Thanks for your courage.
Posted 8/18/2009 2:05 PM (GMT 0)
Donna, I admire your courage. I have been thinking about getting a handicap sticker,
but I guess I am still in denial. Family and friends ask me why I don't get one. Maybe
it is vanity. It is hard to think of oneself as handicapped even though your body tells
you that on a regular basis. I do have a cane that I have used on occassion, so I don't
know what is stopping me from getting that sticker.

Robin
Posted 8/18/2009 2:15 PM (GMT 0)
Hi Donna
I went through the guilt of having a handicap sticker, but I try not to misuse it and I'm sure you won't either. We walk when we can, but as you said somedays are better (and worse) that others and on those bad days it's good not to have to walk so much when we hurt so bad.
I hope you will be able to use the sticker when you need to and to do it guilt free. I think we have enough to deal with when people think just because we don't "look sick" we must not be sick.
Be glad and not guilty that there is something that makes it easier for any handicapped person to get around a little easier and to feel more independent.
Have a great day!
American Woman
Posted 8/18/2009 2:22 PM (GMT 0)
Robin...it took two really bad falls in a parking lot that prodded me into getting the sticker.  Once, I had to have the hubby come and pick me up because I couldn't drive home.  I have this 'thing' that people are going to see me get out of the car and just because I'm not in a wheel chair and LOOK fine, I will get the ole eye roll.  The hubby is the one who insisted I get one...after a lovely stroll through Walmart and I had to sit on the patio furniture after about five minutes while he finished the shopping.

Huggies

Donna

Posted 8/18/2009 2:52 PM (GMT 0)
Donna, I just bought a cane this weekend, and I'm having a pretty hard time with that too.  I've given some thought to the handicapped sticker, and I'm afraid that will just be a matter of time for me too.

 

I too am okay some days with walking.  I can walk around an entire mall just fine.  I ALWAYS pay for it later, but there are some days that walking is okay for me.  However, there are days with my sacroiliitis on top of the fibro that I can hardly straighten up, much less walk very far.  Also, I had a really bad Meniere's attack last week, and afterward I couldn't even walk across the room without holding on to something.  My balance is still a little wonky.  So... I broke down and got the cane. 

 

Even though some days are fine, others aren't, and I still want to live my life on those days too.  It may require a cane or a handicapped sticker or a wheelchair.  Those decisions are for us to make, sometimes with the help of our doctors.  No guilt needed or required.

 

I read a quote the other day on another chronic illness forum.  It said something to the effect of, "I'm not asking you to walk in my shoes; I'm just asking you to allow me to do so."  I think the writer meant that she didn't expect anyone else to "get" it, but she did want them to allow her to handle her illness as she saw fit.

 

I hope your sticker helps you out as it is intended to do. :-)

 

Hugs - Austen

Posted 8/18/2009 3:05 PM (GMT 0)
Donna I had to laugh when you said you rest on the patio furniture at Walmart. I do that too
and also rest at the blood pressure station. To be honest I am afraid of the "ole eye roll"
thing too.

Robin
Posted 8/18/2009 4:43 PM (GMT 0)
Oh Sweetie,  I know just how you're feeling.  After having mine for three years now, we went through that with my son on a mini vacation.  My husband was going to park in the handicap space but my son said you aren't going to park there are you?   Luckily the space next to it became empty.  But I would have spoken up if he would have parked further away.   yes our young adults do not know what we go through.   They see us only sometimes when we feel good.  My children don't live at home anymore so only my husband sees what I go through.     I told my doctor I don't use it unless I have to. And I told my children the same thing. But why do we feel we have to do that explain ourselves.     I even felt guilty when I rented a scooter to take camping July 4th weekend. It was with a church small church group.  Two of the men just looked at me. I was going through major problems two months ago and could not hardly function.  So I told my husband I have to take a scooter in order to enjoy the weekend or I would have been stuck at the little cabin all weekend.  I wouldn't have been able to even walk to the bathroom either.  But you know, I see people who smoke and have a handicap sign and walk perfectly fine into a store or building and think why do you have a handicap sign. I have a problem seeing someone smoking and having a handicap sign.   But we know we need it and that's all that matters.     Tell your son if he is willing to drive you over the winter when you need to go and drop you off at the door, then you won't need to use it.     My sons do not understand at all, they see me doing things sometimes when I really shouldn't because I pay for it the next day.    It also could be that it hurts him to think that his mother is at a stage in her life that he wishes she wouldn't be at too.    I can walk on level ground, but I can't walk up hills or stairs very good.    However since using Cardio Cocktail, I have been able to go up and down stairs without huffing and puffing too much. I can carry my grand daughters infant seat up stairs without being out of breath too much.   I have more energy in the mornings and can get up without thinking oh whats the use and go back to bed on days that I have to work.   I have fibro, arthritis, asthma and COPD.  The arthritis scares me more then the breathing problems do,   my aunt has osteo arthritis and she has had back surgery about seven times.  She fell in the shower and had to have part of her back cemented.  So that scares me because of all the pain I deal with in my back from top to bottom.

    Don't let your son make you feel guilty anymore.  He doesn't know what you feel.    Just tell him you'll call him to take you to the store so you don't have to walk in the bad weather if he doesn't want you to have a sign.  I think after the first four times or so he will tell you to use your sign    But I do know children who are older don't want their parents deep down in to grow older or have a physical problem. 

take care

Deb

Posted 8/18/2009 5:55 PM (GMT 0)

Donna, I read your post earlier, but I had to go out and wasn't able to respond. My first thought was like Deb's. Since your sons don't live at home there don't see you each day to know the struggle you have w/ everything going on. My GM lived to just short of 89 yrs old and never used a cane. My DM is 90 yrs old now, a few yrs ago she had to use a quad cane and now is on a walker. At first it seemed strange to see her use a cane, this was a woman who walked uptown every day. She walked thru the mall, didn't slow down. The cane was very necessary but I looked at her and thought, she is getting older, it was a shock for me. But we just adjusted what she could do and what needed to be changed. When I was driving I would take her up to the door of the building, help her out, set up walker and get her to a bench till I parked the car.  All while using my cane.

My DM has always been independent and I try to make it as easy for her to hold on to that. In so many ways it has been taken away from her, due to age and health. What she can do, she does, what she can't do, we take care of for her.

My children still live at home w/ us. They see what I can do and what is just too much. I know these past couple of yrs have been hard for them. They were used to Mom working, running the house, driving hither and yon, volunteering, taking them and GM wherever. Now, I need help. They help me and they help their 'G'ma'. They love her and will do anything for her.

Sometimes it is just hard to see your parents in that position, it brings your own mortality in view. Remember,you need the ticket to be able to do what you want to do, that is INDEPENDENCE.

A few wks ago, my DH and I went to the store, he parked close to the door. As I got to the door, I just ran out of steam. That patio furniture was just inside of the door and I HAD to sit for about 15 minutes, or I would have collapsed. This past wk end I walked for about 40 min w/ 2 breaks. It was glorious, but later my feet were swollen.

Do what you need to do to live your life, use the card as you need it, don't let anyone make you feel 'bad' for using it. Let those strangers roll the eyes. You have a valid card, the heck w/ them. They don't live in your body, you do.

God bless.  Alice.

Posted 8/18/2009 6:30 PM (GMT 0)
Donna, I was 42 years old when I got my handicapped placard.  Yes, people judge you but, why do you care what they think?  They don't know you and you will probably never see their judging face again!  I remember when I first got mine I was going into a grocery store.  This guy walked past me quickly...the coward...and made a snotty comment about my taking a handicapped spot when I didn't need it.  (We had a placard you just laid on the dash so he didn't see that.  He only saw a young woman walking in the store.)  I hollered out to him to call the police on me.  Lord, I wish he had!  LOL  

Your son suffers from anxiety, not fibromyalgia.  He has not walked in your shoes. You have talked about the sciatica pain you have been having and how you can't sleep.  So, he really doesn't understand what you are going through.  Yes, it's good to walk and you need to keep doing that but there are days when that is too painful.  He loves you a lot but he is judging you.   

 

Before my placard, I had been known to drive all the way to the mall and, because I would have to park so far back, I'd turn around and go back home again.  The long walks in these gigantic stores they have built is murder on fibro.  By the time you are done shopping and walking through parking lots, you will have walked many miles!  You are totally exhausted and in soooo much pain. 

 

You know you need handicapped parking or you wouldn't have asked for one.  You know you need it because  your doctor would never have signed for one.  They can get in big trouble for that!  So, please start using it and ignore ignorant people.  That's what they are...ignorant of what you have to go through daily.  Instead of judging people, they should get down on their knees and thank God for their health.

 

Sherrine

 

 

Posted 8/18/2009 6:31 PM (GMT 0)

Alice...I am 63 years old and my grandfather just turned 106 this week.  He lives by himself and still farms.  My grandmother died two years ago and was 100.  Neither one of them ever used a cane...and my grandfather has only been hospitalized twice in his life and both times were because he was dizzy...all it was was wax in his ears!  I guess I just look at myself and think OMG.  He could out run me to the mailbox! Happy for him though...but where are all those good genes???  LOL!

Donna

Posted 8/18/2009 6:47 PM (GMT 0)
I know what you mean.  My great grandmother lived to be 104 years old and my Mom could run circles around me all of her life....until she had a stroke.  Trust me, I'd much rather deal with fibro than with what my wonderful mother had to deal with the last 2 1/2 years of her life.

 

We are all so different.  I'm happy for your grandparents but that's not you.  So, you have to lead the life that you have and do it to the best of your ability.  Sometimes that means you need things to help  you do the thing you want to and lead the life you want to live.  I'm proud of you for getting the handicapped parking.  Now, please start using it or I'll have to come over to your house and kick you in the butt!  devil

 

Sherrine

Posted 8/18/2009 7:00 PM (GMT 0)
I just got a handicap pass myself this past May. And like yours it is a permanent one. I work in the downtown area of a large metropolitan city. I had to park anywhere from 3-6 blocks away from the building I work, as my company does not provide paid parking and I can't afford the $200+ it costs to park in the building, so I finally asked my GP for one. Yes, I can walk, but not for long periods, just like alot of you have stated. When I walk to much, that night I will be in really bad pain in my hips and feet. It just got to be too much for me.

I not only have Fibromyalgia, but Osteoarthritis, and Crohns Disease. All of these health issues affect my muscles, joints and bones, and affects my ability to walk very far. So if I am able to get a parking spot close enough I will not use my pass, but if I can't find parking close enough I will use my handicap pass. Also unfortunately, all my health issues do not affect how I look on the outside, so someone looking at me would not be able to see how really sick I truly am. So let them say what they want, I and my doctor know I need this pass. And obviously your doctor agreed you needed one too. BIG HUGS!!! JMHO

Hugs
Gail*Nanners*
Posted 8/18/2009 8:47 PM (GMT 0)
Okay maybe I'm not doing as well as I thought I was today. I thought the topic was handicap sticker QUILT. Thought Donna was getting creative again! :-)

I'm sorry you've had such a negative experience with this. It seems those who need this sort of help the most are the ones who WANT it the least. I like Deb's idea to call your son to do the shopping in the winter! Don't let the inconciderate comments of others stop you from doing what you need to do to be safe! Only YOU know what your body can and can't do. You did the right thing in getting the sticker and I hope you will use it quite regularly. Even if you do feel like you can walk more one day, you still need to reserve precious energy for the rest of your day. Remember the spoon theory? Use the sticker to use one less spoon, so you have it for something more important later on.

{gentle hugs}
Posted 8/18/2009 8:48 PM (GMT 0)
Vestabula,

    Don't let your son make you feel so bad about the sticker.  How much of his problem is the fact he is facing is

seeing his mother breaking down physically? We always seem to be the ones who hold it together.....but every now

and then we just can't.

     Both my boys have been there through all of my numerous surgeries, the heart cath, and everything else.

With my knee surgery they even had their kids (4, 7,and 12) help me. It's so much easier when they support you.

     They even laughed with me through the stupid stuff. Like I went to Carousel Mall after the knee surgery and by the

time I left I couldn't move my left leg so I dragged it behind me while I held on to the handrail.  All I could think of is

"The Island Of Dr. Marou"...."Walk on two legs...that is the law".    Then there was the time I had to be push started

(I have a 5 speed) because I stalled my truck. I thought the starter was gone. We spent $187 for a new one and

found that between not being able to bend the knee right and my winter boots, I wasn't making the clutch work.

DUH!!!

     Sometimes laughter is the only thing that makes it bearable.   Godspeed and maybe I'll see you from the hill as Im

working thursday nite.

                                                         Nana Monster

Posted 8/18/2009 9:20 PM (GMT 0)
I know this is a serious subject but when I read the heading I thought it said handicap sticker quilt.  I

thought you had a new hobby. wink

 

Puppylover

Posted 8/18/2009 9:26 PM (GMT 0)
Danib, feel free to use any part of my reply on your blog, especially if it will help educate someone!  The clever quote isn't mine.  I found it on another forum, but since I can't remember where I found it (imagine that!), and I'm pretty sure I butchered it anyway, go right ahead.  smilewinkgrin

 

Hugs - Austen

Posted 8/18/2009 9:27 PM (GMT 0)
ditto :)
Posted 8/18/2009 9:28 PM (GMT 0)
Don't worry about what others think Get the hadicap plates or hanger or both.
I have had both for nearly 20 yrs.as my balance is bad plus arthritis set in when I was younger & it HURTS to walk very far,causing my balance problems..........I use the hanger in others vehichles as needed,why take a chance??I walk when I can BUT when I can't the car is close by just in case...........People who don't have the problem either don't understand or don't want to.....They have a problem.........
Posted 8/18/2009 11:50 PM (GMT 0)
There's no need to feel guilty about this. Your son just doesn't understand that sometimes you really can't walk across a parking lot, go around the store, and then walk back out to your car. Your doctor would not have given you that sticker if you didn't need it. That's something that maybe you should remind your son of. It was either before or shortly after I was diagnosed that I asked my doctor for one and he said no. But I am going to ask him again next week because he has noticed that I am in more pain than he first realized. Just because we have an invisible illness doesn't mean that it is any less debilitating as an illness that is more visible. I think it is important that people rememeber that. And don't feel guilty about your sticker. If you need to use it, then use it. If your son doesn't like it, then that is his problem. You need to take care of you.
Posted 8/19/2009 12:22 AM (GMT 0)
i am sorry about your son's reaction but I am also surprised. Well maybe not. Sometimes people need a reality check before they see what is going on. This is a reality check for him. He may not want to know his mom is not as perfect as he thinks she is. In fact, she may even be human, gasp!

My kids liked the sticker because I did not have to pay for street parking. They teased me about my crutches, cane and walker with silly antics and my wheelchair, they loved. Ever see male dancers play with a moving scooter or wheelchair?

You should not feel guilty. This is your due after living with a slight disability for years. (I do not want to refer to it as major because you are doing great.)

Donnaeil
Posted 8/19/2009 12:39 AM (GMT 0)
The only reason I don't have one is because of what your son said. But in the Winter it will have to happen. I'm not steady on my feet at times either and in ice, which we have alot of around here, I'm simply not going to take a chance. The only reason I've not asked my doctor for a letter is because I'm pretty sure he will deny it since he thinks I need more exercise than I get. If only he could walk in my feet for a week then he'd understand.

Right now I can make it into the store from almost anywhere on the lot. But when I get into the store <shop at super wal mart> I need a cart. At first I was embarrassed but now I just think it's better than collapsing on the floor halfway through.

Remember he's younger than you sweetie and must have more energy..

Keep smilin' :)
Posted 8/19/2009 2:01 AM (GMT 0)
Thank you all for your support...I knew I would have my fibro family.  Danib...you certainly can use this post.  Austen....Isn't meniere's wonderful when your in the middle of a fibro flare???

 

Huggies

Donna

Posted 8/19/2009 2:58 AM (GMT 0)
I completely understand, Donna. I think you and I share the same son! I too was diagnosed over 20 years ago with FM and I have never felt really comfortable talking with my son about it because of what I feel from him. I truly believe it is just too difficult for them to accept that we need help. Maybe they are scared? I just don't know. Donna, I'm certain your son adores you and this is something he needs to come to terms with. Use the sticker when you need to. It's there to make your life a little easier and you deserve that.
gentle hugs
Miriam
Posted 8/19/2009 5:59 AM (GMT 0)
Donna, this couldn't come at better timing because I, too, am suffering from guilt.  I asked my dr to renew my placard and I got another temporary one.  Does that mean the dr thinks I will get better?  This weekend while camping someone teased me (good naturedly) about my walking stick, which I used instead of a cane.  He didn't believe that I walk with a cane and he had to ask hubby who confirmed it.  I still feel ridiculous with it, even when in pain.  I feel guilty using the parking spot. 

Just remember, your doc wouldnt have given you the card if you didn't need it.  I really do agree with others that he may be afraid and in denial.  Take care of yourself and try not to worry what others think.

btw:  my husband's 86 year old grandmother can walk circles around me!

Sue

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