Not Always "Polly Positive"

[technovicki]

I really like this message board and have posted about a lot of positive experiences living with SB (myleo L4/L5) but after reading the 'normal or not' post I thought I would list a few things that can bring me down or find frustrating. I am not trying to bring negativity but some realistic issues that I have to deal with day to day.

1. Because I am so active if I don't check my feet throughout the day I can end up with a bloody mess or swelling once I remove my AFO's at the end the day due to lack of sensation.

2. Waking up with a painful sciatic nerve which requires me to drag myself around very painfully.

3. Having to think ahead about where I am going, are there stairs, will there be railing on the right because going up the stairs using railing on the left is nearly impossible.

4. Visiting a new restaurant and having to inquire about the use of latex gloves, especially when out with clients or on a date.

5. Meeting someone and thinking is this someone I can trust and discuss my SB (to this date have only met one that knew about 75%).

6. Cracking / breaking an AFO which 'benches' me from being active.

7. Wearing out the soles of my shoes, especially on the left foot and having to regularly buy shoes.

8. Speaking of shoes, trying to find dress shoes that can go over my AFO's and can also walk in them -- not a lot of luck. Need to have shoelaces but more women dress shoes do not come with shoelaces.

9. After years of showering on my own its still chore. Although Im sure some bathroom modifications would help but I'm stubborn.

10. Thinking about going out and if I have to use a bathroom and having to try to find a good one w/o my friends thinking I'm being picky because they don't know the reason.

11. The obvious falling, slipping and tripping.

12. Hearing people complain about how the smallest things in their life are not fair and I have to think 'How much thought went into you getting out of bed? Did you have check your feet and put on braces, esp. when you have a lesion which doesn't hurt but requires attention." Im thankful my friends dont have to go through that but it can be frustrating when you think how your morning went.

13. Hiding all the bathroom issues.

14. Having to pay over $3,000 for AFO's that insurance does not cover.

15. Not always able to participate in certain activities due to limited mobility...this is probably the toughest for me. Even though Ill be 30 in a couple of months I still have a hard time accepting this and try my best to make the most of it. But again it irks me even more when healthy people give up so easily or not try at all.

I know there are people here who have a lot more serious issues related to their SB but these are my everyday issues/challenges and life is not always peachy which is true for healthy people too but I do believe it is an extra layer for us or at least for me.

[eng188]

I like what you've said along the lines of having to plan so much. It's almost like "No wonder I don't have too many friends (me speaking)". I like to travel on Greyhound to various places (from Pittsburgh). I was in DC recently, and used the light rail quite a bit. Pleasant thing, it is. But I couldn't really plan to do anything because of my lack of knowledge of where certain restrooms are. I was only there for a soccer tournament at RFK that night, but I got to DC about 5:30am. But instread of being all touristy, I had an overactive bladder and a bowel that felt like it didn't know what it wanted to do (be constipated or the other extreme), so I had to get off at some rather random places to find restrooms. This was compounded by there being painters painting certain restrooms in the rail stations. It really wracked my brain trying to think of past times I had been to DC and where good facilities are.

As far as people moaning about their own problems and not being aware that your problems may be worse, I guess I have the oposite problem. I have very little movement in my legs (use crutches), and I always have folks point that out and tell me how easier their own lives are. Personally, I'd just rather not compare notes.

I will say that when I am in line at a store, no one calls me "sir". Everyone else, yes. But I am "boss", "sweetie", "big guy", etc. :scream:

I guess we all have different experiences in public, and it's great to hear others', whiny or not. Thanks for this thread, vicki. :)

[Dodger67]

Planning ahead and getting information about stairs/ramps and toilets in advance of going anywhere is a PITA.

I live in a small rural community where people often go out for a day's bbq party or whatever on farms/ranches - with only a large bush for a "toilet" - I have to decline all those invitations.

On the topic of how people treat me - what I :arrgh: HATE :arrgh: most is being talked down to.

Also don't "play" with my wheelchair - the wheels are not footrests nor are the back handles public leaning posts!:6775:

[Barb]

I think this is an awesome thread. Let's be honest, having SB (or being a parent of a kid with SB) SUCKS sometimes and this board is the safe place to vent all that.

As a parent I deal with some of the same things, planning bathrooms and for me having to find a GIRLS bathroom big enough for my almost ten year old BOY. Thank god he has long hair, lol. Park bathrooms are the worst I have determined because they don't have trash cans in the stall, leaving you to leave the stall with the personal items you need to throw away at the sink area. That can be tricky!

We pass up lots of invites too because of the bathroom issue. Which makes it hard when you have 'typical' kids that are very sick of having to plan around their brothers bowels.

and my recent pity party for me (just my term, not meant as a generalization) is that we are moving. We are choosing between two houses, one I really love and one that is more accessible. I know I will end up with the practical one and that is really driving me mad right now.

I actually thought of more. How about having people hand you money??? We have experienced that several times. Always makes me feel like I need to dress the kids a little better, lol.

and yes, C goes banana's if anyone touches his chair. We are often at kid places and if he gets out of his chair to sit on the floor, invariably some kid comes and gets in it. IT IS NOT A TOY PEOPLE! and I really hate those parents that act like getting to know my son is a good 'experience' for their kids.

[angel]

Ok i am gonna jump in on this one. For the most part i really don't have a lot to complain about. My biggest problem is stupid people. I am speaking of adults not children as it is the adult's responsibility to teach the children. I have had more comments said to me than i can remember but i think some of those are my biggest peeve. Now let me say my husband and i have only been married for 4 years and he is much more sensitive to them than i am. So is my son. There were several events (with kids from other schools) that i just didn't want to go to. Reason is some kid will say something in front of my son not knowing that i am his mom and my son will go off. I love my son but since we are being honest he is not a fighter at all. And i am sure if someone's butt was gonna get kicked it would be his. I don't want him getting hurt trying to defend me. As much as i have explained this to him he still just don't get that i can handle things myself. I generally choose to brush most of the stares and comments off simply because if i got pissed off about all of them then that is the only emotion i would have time to experience and i don't choose to live that way. And it really is MY CHOICE!!!!

I won't say that some haven't gotten to me. I will give a few examples

Me, my husband and the boys were at the statue of liberty last summer. This woman who was in line in front of us (much older lady)was making small talk. When my husband took the boys to the bathroom she started asking me about him. When she confirmed that he was my husband (he is not disabled) she said. Oh well he must really love you. Now you can interprit that different ways but by her posture and the look on her face you could tell that she ment he must really love you to put up with your problems. The only thing that saved her from my smart mouth (which only comes out when a line is crossed) is that she was an old lady. I understand that different generations have different ideas and i can respect that. Now had someone else said that to me i would have said no he don't really love me we are in it totally for the sex. lol In my opnion if you are going to come to me and say something like you got it comming to you.

When i was 15 years old i was in the ICU visiting my grandfather and a man came up to me out of the blue and said your face makes up for everything else that is wrong with you. I didn't know what to think of that one.

I think one of the worst ones was when i worked at our animal shelter and a lady came up and asked me what was wrong with me. I don't mind explaining, if you don't then they just imagine some of the dumbest and most horrible things about you. Plus i think i represent a segment of the population and i want to represent will in hopes that explaining might make them treat the next disabled person they meet a little better. Anyway i explained that after my spinal fusion i never really got any bigger and wasn't really sure why. She said and this is a direct quote (obcinities omitted) Man they really F*&%$ you up good didn't they!!!! I was so shocked i busted out laughing right in her face. I couldn't help it i couldn't believe she said that to me. I swear it was either laugh or beat her down!!! About two seconds later my boss came storming in and said get the ________ out of here now don't you EVER talk to her like that again blah blah blah....

My most recent was in the store a few months ago. There was a mom and her kid he looked to be a little younger than my son (my son is 11) And he started SCREAMING to the top of his lungs look mom a midget!!!! and he screamed it over and over and over and over again. I was just standing there thinking could you do something about your kid. The store full of people were thinking the same thing. I think they were outraged but didn't know what to say or if they should say anything they were all just looking at him in disbelief. His mom did NOTHING acted like she didn't hear him although i think she was mortified as well. There is no way she didn't hear him i am surprised the people in the store across the street couldn't hear him cause he was literally shreaking the whole time like he was at a circus or something. The fact that she didn't correct him at all was what upset me. Now i am not mean at all and my son has been taught better and would never do such a thing, but if he did i would have immediatly removed him from the store!!!! I am so glad my son and my husband were not with me cause i can only imagine what they would have done!!!


I could go on an on and on i got a million stories like those lol. But i will spare you all lol.

Carla

[eng188]

I'm glad someone set up this b**ch-at-ignorance thread. I admit, I get way too sensitive to this stuff, so I have been afraid to post any stories, because it seems that on this site, no one ever complains about interactions.

Another one is while I was at a supermarket walking down an isle, and these kids were running all over the place, getting in my and everyones way. They almost tripped me.

All of a sudden, I hear their father say very sternly "You need to be more careful!" I assume he is scolding his kid, which should be the case, but when I look up, he is giving me a VERY, VERY dirty look.

Things such as that get me boiling, literally.

[angel]

I can see where that would irritate you. Did you say anything? I feel like such a bad person sometimes because if someone is just being a jerk i usually just toss it right back at them. You are probably a lot nicer to me cause i would have told him to control those little monkeys lol.

(Please let me say that i am not mean and i love kids i just have a messed up sense of humor. I call my son a little monkey all the time cause he is all over the place. I don't want you to think i am a horrible mom or something lol. I just learned that sometimes you just gotta say what you gotta say before you explode.)

Angel

[printemps]

Yeah it sucks , I try try try to not be a complainer but sometimes it just gets on my last nerve. Putting on my afos so I can clomp about , checking my feet to see if I've broken , strained , brused or banged up my toes again. Oh and of course my biggest peave, dealing with bathroom issues . Always planning , worrying about where a decent bathroom is to take care of my needs . what a pain I feel so embarrassed changing in a bathroom stall - I wish the world would just leave me alone so I wouldn't have to feel so funny about that.all the effort I put into hiding that issue just seems so tedious at times I do have an auful lot be thankful for now at nearly 50 yrs old but I feel I wasted many years isolating and feeling left out specificaly because of those issues.

[eng188]

I can see where that would irritate you. Did you say anything? I feel like such a bad person sometimes because if someone is just being a jerk i usually just toss it right back at them. You are probably a lot nicer to me cause i would have told him to control those little monkeys lol.

(Please let me say that i am not mean and i love kids i just have a messed up sense of humor. I call my son a little monkey all the time cause he is all over the place. I don't want you to think i am a horrible mom or something lol. I just learned that sometimes you just gotta say what you gotta say before you explode.)

Angel

Well, the thing is, I would have given it back to him, but it seems like others always get the last word with me, so it's kind of a waste of my breath, usually. I just had a hunch there was no changing his viewpoint.

[angel]

Well, the thing is, I would have given it back to him, but it seems like others always get the last word with me, so it's kind of a waste of my breath, usually. I just had a hunch there was no changing his viewpoint.

I mean this in the nicest way so please don't take offense because i mean no offense at all. In this situation there may have been nothing you could do i have been in those situations myself. But i always make myself heard. The one thing i think is very important for anyone with any disability is to stand up for yourself and when it is really important NEVER BACK DOWN!!!! This is just some friendly advice from someone who has been there. I have had to find my voice if i didn't this world would have eaten me alive by now. I have a right to my voice and it will be heard. You have a right to yours. I have learned that the less crap you take off of people the less they seem to throw at you!!1
Angel

[mommy2cnj]

Also don't "play" with my wheelchair - the wheels are not footrests nor are the back handles public leaning posts!:6775:

Both of my children attend public school. Our myelo-clinic nurse suggested she do an in-service for the kids at the school, basically speaking to the elementary students at their level and let them know that people with disabilities can do many, many of the same things that people w/o da's can do. Both of my children have had many encounters where a child will come behind out of nowhere and start pushing my child. I am not against helping if indeed, my child needs and asks for help. However, I do not let them accept a 'free ride'.

When I read Dodger's post, it reminded me of what our nurse had told us on this particular issue. She told the kids that because the kids' legs do not work as others' do, the wheelchair is like their set of legs. *she calls a child up to help with her demonstration* She reaches down and starts tugging/pulling/moving their calves around, while saying do you like me doing this? Is this annoying you? Would you prefer me not to? She said these 2 children in wheelchairs do not come up to you and start tugging on your legs, arms, etc. Therefore, respect them and do not do the same for them.

Funny thing is, anymore, it's not the students so much that I see giving 'free rides'....it seems the students think my kids' abilities are cool and about run themselves into the wall in awe.........it's the faculty. I say *tut tut......granny-style* to the adult and the situation resolves itself, albeit I do usually hear "they're just so sweet"! :D

[stub20]

lol, thats a really good way of getting people to realise. I also have more problem with adults rather than children. It seems to me that children are alot more used to these things, but alot of adults have very old fashioned views about it. I have even had things said by my nan, she thinks its embarrassing to have someone like me in the family she says. but thats the old fashioned views talking, in those days all people with disabilities were put into a mental institute.

[Justy Me]

I agree that it is mostly adults and rarely ever children who make ignorant remarks. I tell ya, if ignorance is bliss, I may very well have met the happiest DAMN people on earth! I came across a lady who works at my neighborhood grocery store. She mentioned that I am cute despite my "problem" ( I love how people use that word yet they have no idea whatsoever what the "problem" entails) and she said " wow, I think it is so great that u always have a smile on your face"....I, then, go on to tell her " I smile because, in all seriousness, there are people out there who would switch places with me" She goes, " NOT me, I am sorry but that would be a nightmare." I couldn't believe my ears. I was in a depressed mood as it was ( I was thinking about an aunt who passed on), and she had to give me her WONDERFUL opinion. I simply said "neither would I" but now wish I had let her have it. I hate when I think of the perfect thing to say after the fact...I should have said "I wouldn't want to be in your shoes either cuz I'm sitting here with an open mind, whereas u are standing in a closed one" MAN if only I could come up with a reason to say that to her now!!

[Barb]

I HATE when I get caught off guard and then come up with the perfect thing to say after. That is so when you need a rewind button! :sign0020:

[misty]

I am so glad we are ranting! I hate the bathroom thing too! I have actually told my friends that my bladder has "stage fright" and that they can't come in the bathroom with me or I can't go! I also hate people who feel sorry for me! I have enough to deal with without having to reassure you that I am okay with myself! And stares from people while I'm in public places! Do I have a freaking booger?! Lol!

[hendrikson21]

My cousin is about to be sixteen and has sb (we have always been very close). she's in the hospital rt. now (runing tests) she has been experiancing migranes, and neck pain, and back pain. they found a sac that has developed on the bottom of her spine. i was wondering if someone knows what this can mean??? im nervous for her (it could be various things), ive looked up as much as i can on the internet (until test results come in im in the dark). so maybe someone that has experianced this can educate me on this. My cousin is experiancing very difficult times (highschool)being one of them. she is so smart awsome personality and a great swimmer. but she is very stubbern and indipendant so trying to help her isnt always easy (and i understand that). but what i want to know what are some things that i can do that can boost her spirit without her thinking im "feeling sorry" for her or treating her different.(im 22 she is 15). any suggestions or anything would be greatly appriciated.