Does Complaining Help???

[kdfrawg]

If nothing else, my multiple sclerosis will keep me out of huge stores like our recently super-sized Walmart. I'm not giving up walking until I absolutely have to, but stores like that make me fairly sure that I am going to keel over somewhere in the sundries department at the back of aisle 74.

[Diane Amberg]

 Most of our big stores here now have electric scooters. We have a very good ADA contingent that has been very succsessful here. One girl, Denise, is a real radical. She has been known to chain herself to doors in public places when she can't get her scooter inside.( post- polio syndrome)  My husband has it too, and can still do pretty much whatever he wants, but he is on an "energy budget" each day. Mornings are great, but by afternoon he uses his scooter and has to rest and/or take a nap before evening activites. Fortunately, we found a wondeful post-polio Dr. at the Hospital of The University of Pennsylvania Hospital (HUP) in Philadelphia. Mary Ann Keenan. She is a world treasure. We were up there in June for a check up and there was a man there from Tulsa who had flown in just to see her, she's that good. 

[kdfrawg]

I completely understand the energy-budget concept. It is key in multimple sclerosis, too. I find that I have two limits: how far I can walk at one time (somewhere between a block and two blocks, depending on the day) and how far I can walk in the entire day (maybe a half dozen walks at the first kind of limit) without keeling over. I am a stubborn old fart and will eschew the use of scooters or chairs until I absolutely have to. I write the following about the subject of those limits:

Just a Few Hundred Steps A Day

Multiple Sclerosis is not an impartial disease. It treats everyone who contracts it at least a little bit differently than any of the others. However, there are a few common threads shared by many sufferers, including me. One such thread is the disease's limit on stamina, often involving walking distance restrictions, although the limitations vary widely by patient. This is a two-part problem. The first controls how far I can walk in one unbroken trip. The second controls how far I can walk in a full day before I just can't go another step until tomorrow.

These limitations, like most parts of the MS mystery, are not etched in stone. Some days I can do more. Some days I can't get even close to the usual limit. But it's very important for a person with MS to know what the limitations are. If I'm standing downtown at store "A" and a companion wants to go down the street to store "B," it's essential that I know whether or not I can make the entire round trip.

When such a situation occurs in my everyday life, I have a decision to make. My normal limit is about one block in a single trip and today feels like a normal day. The store is one and a half blocks away, but I can see a public bench about halfway along the route. We can do it! Three blocks in four segments is well within my capabilities. However, if the bench was not there, or the store was two blocks away, I would need to convince my companion to drive or go without me. Being stuck halfway between stops with nowhere to rest is not a good option for a person with Multiple Sclerosis.

Sometimes a day will be full of short trips: perhaps the drug store, the grocery store, the discount store, the coffee shop for a cup with a friend, and the dry cleaners. The longest round trip from the closest parking spaces to any of these destinations and back is usually only about three-quarters of a block, on average. That should work!

Well, on second thought, perhaps not. The total of those trips is about four blocks. If my overall walking limit for the day is four blocks, no matter how long I can rest between trips, I could very easily get into trouble with this itinerary. Exhaustion could hit me on the way out of the dry cleaners. Then, when I finally arrived at home, I would somehow need to carry all the purchased items into the house and put them away. A little later, I would have to get upstairs to the bedroom.

A person living with MS is forced to become good at logistics. Go to the discount store and the dry cleaners tomorrow. They'll wait. The truly inflexible factor in this situation is the total-steps-per-day limitation, so the person with MS has to be the flexible part of the calculations. It's better to delay a few errands than it is to get stuck halfway up the stairs tonight.

My personal limitations are about one hundred steps in a row (in the morning, perhaps fewer later in the day) and about six hundred steps total in one day. That makes it possible to do some finite number of things. I simply have to plan my days with my distance limitations in mind. Even so, some things are not possible at all without a wheelchair, such as going to a museum or getting through an airport.

It is also important to consider the effects on our caregivers. In my case, my steps-per-day limitations often increase the number of steps per day that my wife and daughter have to take on my behalf. The person with MS needs to be considerate, to help out wherever she or he can with tasks that are within their capabilities. Perhaps they can trade a hundred caregiver steps for an hour sitting in a chair folding the laundry.

At the very least, never ask a caregiver to take extra steps that aren't absolutely necessary. Caregivers sacrifice a great deal for us every day. It's not fair to ask them to sacrifice more just to satisfy a whim. We have to make sure that we never take advantage of our caregivers, for we would be lost without them.

[MarineMom]

Although RA is totally different from MS we also have to weigh how much energy is left before starting a new task,  I know when the the battery dies its time to find something to do sitting down and recharge enough to get through the rest of the day which usually brings me to the forum 

[Diane Amberg]

To both of you, I totally get it. I have a good friend with moderate MS and had two others with terribly bad cases that died from it. And humor does help....See, we are so silly for a reason.   Medically, laughter really is good for you.

[kdfrawg]

No matter what path you take to the requirement for an energy budget, the reality of it can take some getting used to. It's just one more hurdle to get over on the weird path that we wind up taking through life.

[Wilma]

Me, too.  When whatever I am doing tires me too much, it's off to the forum for a short? rest and a little cheering up.

[kdfrawg]

So far, my sense of humor is pretty much all that has helped. As it transpires, I had it for ten or fifteen years before they diagnosed it. I have to admit that I spent some time wondering what the heck was going on with me.  ;o)  They finally found the scleroses with an MRI, but by then I was well past relapsing-remitting and just on that slow slide down. It is sufficiently slow at this point that something else will probably kill me.

But the differences among people with MS are amazing. About a year after I was diagnosed, a friend was also diagnosed. Within six months she was blind and in a wheel chair. Six months more and she was gone. I have worked with a lot of people with MS, through the NMSS, and in most ways I consider myself to be pretty darned lucky.

[Teresa]

I don't have any problems like that at Batson's Drug Store, Family Market, or Cookson's True Value.

In fact, I think I will send Wal-Mart an email and let them know I don't need them at all anymore!!!

POW!!!!!
Now THAT statement should have hit home to the locals.........
and if it didn't then .."Shame on you!".
( It kinda hit home with me..that's for sure) 

I shop out of town for the items I CAN'T get here at home. clothing computer supplies..books etc... and I am guilty as charged for buying things at Walmart, that I could get here at home...when I am there. I really am.. I am getting so much better about shopping at home...
But... lots of times...
I sometimes walk out of the "super stores" with groceries etc.. that I could have just as easily bought right here at our hometown grocery store.

And  you know?
When I do.. I guiltily think about Julie and her long hard hours of work and investment to give us a grocery store ( that everyone in town was bitching and griping about ..when we DIDN'T have one )
And her drug store and prescriptions are equal in price to Wally World's... in fact on her drug prices.. she is cheaper in most cases.. and you get personal advise and service  from someone who knows you and your family... and you won't get that in Walmart.!

And then I think about Mark and Derek Cookson..working their tails off every day in the hardware store, giving everyone who walks through the front door  help and personal service that you would never ever in a million years get, at Walmart. People ask them to fix their broken mowers and weed eaters that they bought at Walmart, cause no one there will or CAN do it.! In fact, to have anything fixed anymore in this "throw away " society  is a rarity.
But Mark and Derek fix all those things that people bought someplace else! And most aren't even aware enough to be embarrassed about that  either!

And yes ..some things are higher than Walmart.. but some things aren't too.
Is Walmart going to care if you are a bit short of cash this month and let you 'charge' your purchases until you can pay? Is Walmart going to open their doors with personal service  at midnight and help you put together your bathroom plumbing, cause you just woke up with busted pipes?
Is Walmart going to special order something for you and then if you can't get in to get it that day.. take it by your place or take it home and set it under the carport so you can pick it up when you get home?

And what would everyone do if these business's  shut down? 
Other than cry and moan and groan and whine around that Howard  has become a ghost of a town..and what in the world happened and what are we going to do now.. ...blah blah blah.
They will be frantic in saying,"The 2 main business's has closed and who is going to open up something for us locals in Howard?"

The same people that will spend the money in gas to drive out of town to shop at Walmart
are the first ones to cry and wail when the grocery, drug store and hardware store is no longer here, because of not being able to make a living anymore..

I think I have made my point here!

((Guess I should have ranted on another thread huh~~ )

Maybe I've just had a bad day..or maybe I'm just so overtired, overworked, and stressed out that I over reacted to this.. Maybe I need more sleep and more than 5 minutes to myself  without  the telephone ringing, or another batch of business work to do..............And maybe I should delete the whole damn post before I step on some toes....................
Or maybe I am just sick and tired of Big Corporations squeezing small town America out...and small town America contributing to help make it happen!

Oh well.... sighh.............

[kdfrawg]

Bingo.