creepers said : "I also have what I call payment activities. If I do something one day, IE: wash the car, play with the niece and nephews, I have a payment of pain coming. This will last one or two days and during that time I don't leave the house and engage in my pain management routine."
I like and will remember that statement - payment activities.
I cannot go out to meetings/activities two evenings in a row .. and pay for things I really enjoy doing. Instead of thinking "I will pay for this" I will now call them payment activities! Between my age and MS, the stamina is limited. But the pain resulting is not limited.
Traveling down the Road "Side by Side"
2004 Alpenlite TT 28RL
2008 Suburban 2500 Lt
Home Base: Tri-Cities WA - USA
Dh, our 2 year old German Shepherd, 15 yr old Beagle/Spaniel and me.
Exploring every National Park (and Monument) in USA, Canada, Mexico & beyond.
3 well-used backpacking tents.
2008 Itasca Impulse, 24'
I_rv2 wrote: ...(And no, you are not disabled if you can ride a bike or climb up on the roof of your RV)...
Kinda a callous attitude about someone being a cripple. I "can" ride a bike, climb on the roof of the RV, ride a motorcycle, and even umpire Little League games. The down side of being a cripple is that I "can't" ride a bike very far (less than a mile on level ground and forget hills), I can only climb that ladder if I absolutely have to, I will never be able to be a Motorcycle Safety foundation instructor again nor pass the DOT physical for a class "A", and I can't umpire the 130 plus Little League games a year I used to. I will never trust my fake leg to hold me up all the time (no I didn't lose it in the military, I lost it to a staff infection after I retired) nor my memory. I addition I will never breath right or be "pain free" again.
As someone else has said in here "I pay for these activities with extreme pain the next day".
I will continue to do these things at the pitiful level I now do as long as I can stand the pain to show that I am not ready to give it up yet.
Fight on, kendas! The resting is the hard part, isn't it?
Just like there are payment activities, there are savings to be found. I found if I take all the possible discounts and spend very carefully, I just MIGHT end up with a little extra at the end of the day for something else that gives me a slightly better quality of life - maybe a better meal, or reducing the pain meds a little. I might even find a little something in there for some little bit of fun. Or I might be able to store enough to go for groceries tomorrow.
I cut it so very, very fine you wouldn't believe. It was this or assisted living, so I made it my mission to re-engineer my life. I examine every single action I take, looking for the simplest, least-spendy way to do what I must. Not hoofing it through parking lots or to laundry rooms is a small but vital part of that mission. Zero clean-up meals are another. No mail-in rebates - ever! Either put it on sale or don't.
Aside from the practical stuff, there's the people thing. I've spent the last 4 years working hard on this. I eventually found three rock-solid signals that will invariably tip me off to avoiding unnecessary expenditures:
"But you don't look..." statement. That is a person of limited understanding. "Yeah, I know," is all that is required.
"Why don't you just..." question. it doesn't matter what follows. 'Just' is not in my vocabulary. If it's in theirs, I'm gone. This is a person who does not even begin to get it. "Sorry, I can't. Gotta go." (Likewise, anything written that says "It's easy! Just..." NO. If it was? There would be no 'just'. That word never EVER appears without a verb right behind it. You are about to acquire a payment activity.)
"I don't like taking up the handicapped spaces." The simple reply, "You're not. I am." gets it done. No explanation is necessary.
Anything further will land you in a debate, an insult-a-thon, or a lecture with an unwilling student - or all three. (Although, unwanted lectures can be an entertaining form of social punishment. People will say things to you they wouldn't dream of saying to a person in a wheelchair or a bed. It's like people telling you racist jokes because they perceive you are white - not realizing your family (your invisible social disability, to them) is mixed. They're gonna do some pretty sick stuff, guaranteed. You can either use your time and energy to try to change them, or to try to change your own conditions. If I was smarter, I'd figure out how to do both with the same amount of effort. But I'm not that slick. As it is, it takes practice, no one does it perfectly. But you can get pretty darned good at it!
I'm not saying don't be an activist. Just do it on your own terms, so the payment/savings flow works for you. People will chew through your carefully-garnered savings and induce those payment activities so fast it's not even funny! And they don't do the payment activities. YOU do. So you HAVE to boss the situation or pay the price.
Hah! If your tank valves drained as suddenly and without warning like that, you'd see an 8-page thread about it here. There would predictably be a debate, an insult-a-thon, or a lecture with an unwilling student - or all three. And at least 6 people would say, "Why don't you just...".
Quote: "But you don't look..." statement. That is a person of limited understanding. "Yeah, I know," is all that is required
I know a guy that responds to "you don't look disabled" with "funny. You don't look ignorant."
I get stupid variations of "you don't look" comments. I have no apparent disability. I use a medical alert service dog, and am always asked if I'm training him. "No. He's MY dog and he's working!" I grin and walk off. I know they're DYING to ask me what my disability is, but I never give them a chance. It's none of their darn business. Each of us has our crosses that we carry. I can do things you can't do on a daily basis. And you do things without ever realizing it that I can't even imagine doing.
I like Serena's approach. I believe in HIPAA. My medical issues are no one else's business. I have a friend that gets questioned (by laypeople) about her disability placard. I told her her response should be simple: "Why do you care about my medical issues? Are you going to pay my doctors' bills?" Then smile and walk away.
Thanks people... Sometimes I have to "vent" a little, especially when somebody starts in saying something like that and the comments I've heard about my "properly" plated Goldwing wing in the "blue" parking.
I umpired some Special Olympics upper division softball this year and had a blast!
Had a couple of the guys try and "get away" with the "I'm crippled and you're not" routine... I just lifted the right pant leg and said "no sympathy here, go try it on somebody a little more ignorant". The looks were "Kodak Moments".
When people ask me what my disability is, when riding my MC with DP plates, I respond unresolved mental issues. Boy do they leave me alone. Had a cop ask me that once at a country store when I parked in DP and when I gave that reply he spit out his sandwich.
Granted, there are many levels of handicap. There are also many levels of handicap provisions. Being paralyzed should not entitle someone to TDD, and being deaf should not entitle someone to handicap parking. While most handicappers take only what is required, there are those who have an entitlemant attitude and think they deserve everything they can grab. Handicap parking is mainly for those who need wide spaces in order to open doors fully to accomodate a wheelchair, walker, crutches, etc. They also provide close parking for those who cannot walk far. But it is damned rude to take a space from someone who NEEDS the parking space, just so you can park close to the mall for your daily rehab exercise 2 mile walk inside. Or to pressure your doctor into a handicap parking permit for your hearing loss, or your upper extremity injury that doesn't affect mobility, or even for your leg problem that doesn't stop you from normal activities. And I have seen people try all of those. Even for a fairly severe, but intermittent problem, it is rude to use the handicap space if you are in remission at that time.
Similarly, my wife and I have often been unable to get the few level and adequately unobstructed camping sites because someone who has a handicap that doesn't affect their mobility has grabbed it. So we are left barely able to open the ramp on the trailer to get her in and out and fighting to get the wheelchair around an unlevel site while the other "handicapper" is off playing golf.
Please folks, don't judge others until you know the level of pain and disability they suffer. But also don't feel free to take for yourself things that someone else may need more. And remember that you may be handicapped in some ways, but that doesn't mean in all ways. An example: my wife is many times more handicapped than some of the people drawing disability, but she has the gumption to work so she does. She has been paraplegic for 50+ years, but can't get a deduction from IRS for permanently disabled because she can work some. And she is glad to forgo the deduction if it means she is still capable. We once passed up the handicap room at a motel because the doors were wide enough to get into a regular room, and someone else needed the adapted room more. Marlee Matlin got booted off "Dancing With
The Stars" because she had trouble following the beat of the music, even though she could have demanded a flashing metronome, or other accommodation. But then that would have opened the door for the too heavy, tall, short, old, or whatever to ask for special allowances.
Still, this begs the question: if one can climb ladders, walk distances, ride a motorcycle, or do other similar activities, why do they need a special handicap camping site? Educate us on this, please.
You know, this whole conversation reminds me of the last time I was undergoing physical therapy due to continuing polio problems. I befriended a guy there who was rehabilitating from a workman's comp injury.
The poor guy could hardly walk from the waiting room to the physical therapy area ... and had real trouble doing the exercises.
I could tell he was really hurting.
Until I ran into him walking out of a local grocery store. He was carrying two cases of beer out to his car.
I could tell he was embarrassed ... and he told me that he was "having one of his good days."
The next time I ran into him at physical therapy, he apparently was having a bad day, because he could hardly walk from the waiting room to the physical therapy area.
Haven't seen the guy for a few years.
I hope he's doing alright.
Funny thing about my polio problems. Even on my good days, I need my crutches.
I started this whole "if you can get on the roof of your RV" thing ... and I stand by my statement.
Maybe it's because of a lifetime of trying to figure out what I can do ... rather than what I can't do.
And I'm perfectly capable of camping in a regular campsite ...
Of course, I can't ride a motorcycle or ride a bike. Never have been able to.
Maybe in heaven.
But until then, I can look at myself in the mirror and be proud that I trying to be all that I can be ... rather than trying to convince my doctor that I can't do something.
But hey, what ever floats your boat.
Opnyn8d, I hope to meet up with you and your wife someday. You sound like my kind of people.
Oh, I'll be happy to educate you, because you sound like you just might be capable of learning something.
For some us, staying in 'remission', or just having a 'good' day means absolutely avoiding all fatigue and unnecessary energy expenditure. This is typically true of those with ME (CFS)/Gulf War Illness/Lyme Disease/MS/PFisteria/ sometimes PPS. One part of that unnecessary energy expenditure can easily include overrunning cognitive capacity, such as trying to find your car when you come out of the store - particularly after being in lines and doing money transactions. Each thing affects the other in ways that would never be apparent to any but their most intimate friends or other sufferers. The knee bone is indeed connected to the thigh bone - and eventually, the brain.
Metabolic disturbances, where the cells cannot produce ATP readily or quickly, would be an example of a situation where every unnecessary expenditure of energy must be avoided.
Environmental illness involving extreme hypersensitivity to various substance can be another example. An unexpected exposure can produce anything from sudden weakness and cognitive decline to seizure-like episodes. Getting out quickly may be imperative.
Another example can be various connective tissue disorders, such as Ehlers-Danlos or Behcets. Or structural problems such as Chiari Malformations. Remaining on your feet may indeed be perfectly possible - but not at all desirable, because there is physical payback involved from the stress on weak or entrapped tissues, even if it felt great to do it at the time.
Another example is orthostatic intolerance, where remaining upright may be possible, but only for a limited time, and only while pulse and blood pressure can be maintained at a reasonable level. The need to go home suddenly can occur often and without warning. Trekking a parking lot can be the difference between getting home ok and not. (This one can be connected directly to cognitive ability, because the brain can be robbed of circulation.)
Yet another example can be dysautonomia - the inability to control one's body temperature. You can be fine when you arrive, but get hit with cold or hot air from a vent inside and the need to exit immediately to a controlled environment (which may be that vehicle or home) becomes extreme.
BTW - any and all of those conditions may occur individually, simultaneously, or in rapid and unwarned succession in many of the illnesses I named. And yet, most of those illnesses give absolutely no outward sign of their existence, and are not limited to some age group.
So, if you make the mistake of trying to decide who needs the spaces and accommodations based on your limited knowledge of those illnesses, you only put yourself in the position of condemning those who already ARE trying to do more and be more self-sufficient for having done so. By the logic given here, they should all just stay home and forget it because you don't understand and feel doubtful. And some do. They are too timid and self-conscious to brave the judgment and ridicule they feel they will face if they dare to try. They feel like they cannot use the mobility scooters at the stores because 'someone else might need them more'. So they live in isolation and misery instead.
If the gentlemen is proud of his wife's go-to attitude, so am I. I'm also very proud of myself every time I find a way to practice self-sufficiency without winding up in bed and dependent upon others. And every time I stick up for those who feel judged. I just handed you a long laundry list - but there are doubtless others I don't know about at all or forgot to mention.
Sure, there are malingerers and abusers. But that's not for you and me to decide. Leave that to their physicians, because even though they, too, can make mistakes, you and I have even less chance of making a good call. We don't have all the facts, or the specialized education necessary to interpret those facts. An example would be the visible disability. We've all seen it - the morbidly obese person using a mobility scooter because they've apparently blown out their knees and maybe their heart. Easy to make a snap judgment about their character - not easy to tell if steroids and other medications needed for unseen conditions may have contributed heavily to the problem you do see. You don't know. And it's not their (or any disabled person's) responsibility to educate you on command - especially when doing so only adds to their already-considerable burden. I'm happy to share the information in hopes that it might result in just one less unhappy confrontation or fearful disabled person backing down from doing their best.
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People will say things to you they wouldn't dream of saying to a person in a wheelchair or a bed. It's like people telling you racist jokes because they perceive you are white - not realizing your family (your invisible social disability, to them) is mixed. They're gonna do some pretty sick stuff, guaranteed. You can either use your time and energy to try to change them, or to try to change your own conditions. If I was smarter, I'd figure out how to do both with the same amount of effort. But I'm not that slick. As it is, it takes practice, no one does it perfectly. But you can get pretty darned good at it!
"No. He's MY dog and he's working!" I grin and walk off. I know they're DYING to ask me what my disability is, but I never give them a chance. It's none of their darn business. Each of us has our crosses that we carry. I can do things you can't do on a daily basis. And you do things without ever realizing it that I can't even imagine doing. 
