This was a tough one for me. I have lyme but never saw myself as "handicapped".
For quite some time, I have had family and friends tell me that I really should apply for the handicapped permit so I don't have to walk as far when going places.
MY response always was, if I'm struggling that much, I don't go anywhere anyway.
But with so many doctor's appointments and having my husband drop me out front while he looks for parking has run its course.
So my husband decided he was talking to my LLMD about signing off on getting me a permit.
Ouch.....it's it strange that nothing has changed but when you see the actual permit, you feel humbled.
Most days I would never need it but some days I'm so spastic, jerky and off balance that yes, my doctor signed off without batting a lash and the thought that I would even HAVE to use it is making me self conscience.
Anyone else been through this? I'm so busy trying to PRETEND I'm walking fine but I guess everyone around me is saying I'm not faking it very well, when in my mind, I WAS.
I'm not REALLY "handicapped" and it is different from day to day, so has anyone had to admit that they have a walking problem due to this disease?
If I was still in the wheelchair or even the walker or cane, I could see it, but most times I'm just walking like a drunk?????????????
This is a hard one for me to accept. Why am I so hung up on that word "handicapped"? I feel like I"m abusing the system for someone in wheelchairs or something.
Cathy
Posted by DeafFromLyme (Member # 18795) on :
Don't feel like you are abusing the system! If your doc thinks you need it then you do! We Lymies seem to get jipped out of everything, finally you are getting something you need! without it costing millions!
Obviously you aren't very good a faking it!
I was given a placard for my son due to his oxygen requirements and like you at first I felt like I was abusing the system..
Think of how it looked with me someone who can walk getting out of a truck in a handicapped spot... People ALWAYS Looked at me funny until I took my son and is O2 tank and pulse ox out of the car!
I only use our placard when I have his tank with me, like when he is sick or something otherwise I park in regular parking.
Its good to have when you need it! And if you don't need it on one particular day, then you don;t have to use it! I think its great that your doctor is giving it to you as a precaution.
It does not mean you are handicapped, it means you have a disease you didn't ask for and some days need something extra! No biggie!
Best of Luck to you!
Posted by Tick Tock (Member # 15948) on :
I struggled with this too. I finally talked to my LLMD and his response was "absolutely". He signed off on it also without batting a lash.
I also feel like I am not as handicapped as someone else. I can walk some on most days. And I always think I'll get better soon, just a few more months of ABX. Well, two years later I am still in enormous pain and can't walk more than 40 feet without pain.
I was thinking of carrying some brochures or info on Lyme in my car so I could share it with those that think I am abusing the system when I jump out of the car and look so healthy and normal.
Thanks for the words of encouragement. It is a disease I didn't want and somedays I need a little something extra.
Posted by Lymetoo (Member # 743) on :
I used to have one. It made me uncomfortable, because I LOOKED so healthy. This was while I had Lyme, but was undiagnosed.
Nevertheless, I didnt' feel I was abusing the system and I only used it when I was really in pain.
Cathy, I'm sure you need it all the time.... so use it !!! It should really help you and your husband too!! Posted by tdtid (Member # 10276) on :
Thank you all for the pep talk. I think what mystifies me so very much is that one day I can be walking on my own...very slowly, but ON MY OWN.
The next day, I'm CRAWLING just to get to the bathroom. This disease has been so darn insane, I don't think even I would believe it if I weren't living it myself.
So when people say, "but you seemed fine yesterday", it makes me self conscience that I'm on all fours to get up or down stairs. Grrrrrrr.
So although I know we each have our own struggles with this disease, there is still a part of me that feels I LOOK too "normal" to be considered "handicapped".
I haven't even tried to use it yet, so I don't know what the response would be and if I'm not walking right, I don't go out.
It's mostly for the days of doctors that I may be struggling horribly but can't cancel the doctor just because it's not a good day.
I surely wouldn't use it when I'm holding up since I DO want the exercise. I'm loosing too much muscle as it is.
It's always comforting to know others have faced the same stima's and delima's that you are dealing with. Thanks for the responses.
I'm STILL not "handicapped" though.
Cathy
Posted by bettyg (Member # 6147) on :
cathy, we are just PHYSICALLY challenged!
i love mine and did when it was temporary too! when i got a PERMANENT one, i got one EXTRA to have for my purse when friends take me out so i don't have to go to 1 of our vehicles to get it out.
worked great 2 yrs. ago when friends took me to des moines for my hip surgery and all appts. they just kept it in their vehicle since i was going on regular appts.
Posted by Kreynolds (Member # 15117) on :
Cathy:
Yes I felt very wierd walking into the DMV asking for a handicap placard, but it was necessary for me to get one because I have trouble walking. Don't feel like you're cheating the system, thats what their there for...
Posted by bettyg (Member # 6147) on :
reading this made me think of my late dad going to 1 of his 1st cousin's/closest friend's funeral...
he parked 1 block from church and there was ONE handicapped by church. i asked him why he didn't take it ... someone is worse off than me!
meanwhile he huffed/puffed and sat down 3-5 times before he made it that 1 block with his congestive heart failure and kidney failure!!
so cathy, don't be like my dad; use it when you need to and if you are having a better day ... walk for the exercise! xox
Posted by tdtid (Member # 10276) on :
Yesterday I actually was glad I had the handicapped card for the mirror since my doctor sent me to the hospital to have my port cultured for a possible infection.
I was so darn ill and for the first time, I was actually grateful I had it, so it's funny how our tune can change when we really get beat down.
Betty, I really can relate to your dad since that has always been my philosophy. Just not yesterday.
Thank you all for the pep talk. All things seem to happen for a reason in life.
Cathy
Posted by Keebler (Member # 12673) on :
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Years ago when I could still go out some I went to the Art Museum to see the ancient Chinese Soldier exhibit.
I should have borrowed one of their in-house wheelchairs but was determined to pretend that I was normal and just a regular patron enjoyed an afternoon on the town.
I was spastic - sudden jerking from waist where my whole top half would suddenly and violently fast become parallel to the floor - I clearly was not normal and I don't know how I thought I could pull it off.
It was exhausting. AND when I got to the large room with all the clay soldiers - very near one of them, I stumbled and fell, nearly landing on one and barely missing the alarm system. My brain had done a flip-flop in my mind and I had no idea which way was up.
Now, had I had a sprained ankle, would I have thought twice about borrowing a wheelchair - as an aid to prevent further injury? Of course not.
So, that's the test. If something will help you take better care of yourself, not further exhaust you and make healing harder and longer - it's our responsibility to accept whatever supports we have our our assistance.
It's human to need some help. Forget the media that paints all people as in great health. That's not the real picture. It's okay to have a sprained ankle - or a sprained life.
It's okay to keep it from getting worse while still getting out.
It's nobody else's business, either.
Take care, now.
-
Posted by tdtid (Member # 10276) on :
Keebler,
Thanks for sharing that story. It does help put things in perspective.
You are right...if we just spained an ankle, we would surrender to it. I know when I had foot surgery, I was on crutches and knew I had to baby the foot.
And here that was nothing compared to what I'm dealing with now and yet the mind set is so completely different.
I guess it's naive to think we can "pretend we are normal" when sadly, that just isn't the case.
But yes, taking care of ourselves NOW will help us with our recovery process, so again, thanks for the insight on this.
Cathy
Posted by bettyg (Member # 6147) on :
on my only trip to NYC in aug. 2000, i took along a wheel chair in the chartered bus i was on.
i used it in NYC when we walked at night looking around and also in UNITED NATIONS BUILDING. when we got to one room, it left a small hole in the wall, but tour guide said it was being hit daily by wheel chairs ... no big deal.
when walking at night, i was going across the street on green lights, taxi cabs love to scare the crap out of you if you don't make it across.
with me in the chair, i had a few really nice guys; rest were out to hit me! uffda ...
Posted by Tincup (Member # 5829) on :
Your feeling awkward can't be much worse than when we were in NYC for the Lyme protest years ago.
We were protesting across the street from the BIG hotel where the IDSA had the conference... and our LLMD's medical papers were not accepted. (Wormser)
Anyhow.. While protesting, I had to stop to go to the little girls room.. which was across many lanes of traffic at a big intersection, inside the hotel lobby.
Country bumpkin here was in trouble! There were LOTS of flashing Walk/Don't walk signs, traffic lights, car horns, loud noises, taxi cabs flying past.. you know.. the city.
Two times I tried to get across when the right time came.
Two times I couldn't make it before the lights changed again.. not even 1/2 way.
Finally the sweet policeman who had been "guarding" all of us... the little protesting devils.. noticed my unfortunate situation.
Without saying a word he walked out in the middle of the intersection.. and proceeded to stop traffic in all 4 directions.
Then he blew his whistle, pointed at me and waved for me to walk across the intersection. Just me. No one else obviously needed to go anywhere on foot.
I tried to say (by waving) no thanks.. but that didn't work.
It felt like it took me 45 minutes to get across that huge street with everyone watching me.
It probably only took 2 minutes really.. but with everyone having to stop for ME.. oh my!
My hips/legs hurt so badly that I had tears in my eyes when I reached the other side.
Moral of the story-
If you need help, take it when offered.. or.. Plan B...
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