This is not a "woe is me" thread, just something I need to vent to make me feel better I guess


It has been humid HOT humid HOT and humid here in NY for the past few days. I mean sweat fest and it has dragged me down fiercely physically and mentally as I haven't been able to muster much of this at all without feeling like a melted turd I wanted to take a ride on the MT bike, but there was no way, even in the evening it was too humid and I only got in a couple of miles. I've also been inside most of the day and I can't stand it. I know heat is hell for MS, but just last year I delt with it well and it didn't bother me as much as it is now, this year. I guess this is progression? I'll have to mention this to my doctor and see if I can do something more for it. This sucks, such a time waster MS is....feeling new stuff happening and trying to chase down a solution. This afternoon I went with my mom to the grocery store, went inside and told mom I'm going to try and do the scooter again.

So I got used to the controls on this one, but the steering sucked real bad, they need to oil the steering shaft on it and I mentioned it to them. It was so sticky that turning it, you had to quickly turn it back and fourth to keep it going straight. Kinda like a car that wants to wander right and you have to steer left to keep it straight. Christ, I think walking would of been easier.
Well I headed down through the store and after a few minutes I was sitting there rolling and realizing that "holy cow, I'm riding a store scooter" as in "I have Multiple Sclerosis a nerve wrecking disease that makes my young self have to ride a scooter to get around the store. I realized "I am one of them", a disabled person, one of those people I used to see on scooters in stores and using canes....I am one of them now and I can't believe it. It really set in today, boy and I felt pretty sniffly for a few seconds.

I got over it and told myself "Meh, whatever....just let's have a good day, it's no big deal" Further down the isle as I rolled, I noticed a lot of people simply do not move out of the way of me on a scooter! I was fully stopped while this woman is talking to another woman about Ben and Jerrys Ice Cream, lol. I thought they would move out of my way, but they didn't, so I had to ask them. What's with that? It happened twice with two different people. I also got into a game of "which way are you going" with some girl. We almost collided so I laughed a bit and said I'm going this way. She barely cracked a smile. So as I go I see this old lady bent over, getting lottery tickets out of vending machine. I told her I am coming through and she looks at me with a nice smile. I told her I am new to driving these things and she better watch out(Humor) she laughed and told me I was doing well with it and she'd probably be tipping stuff over if it were her. She also said "Hopefully you won't need it again till you're 80

Apparently she probably thought I had a temporary problem, broke leg or something...wart on the foot....something like that. Little did she know, I have a disease and scooters are going to be a lifelong friendship. That kinda hot home, because here I am a young dude in my 30's(look like 20's) no cane....nothing n me that says TERMINAL DISEASE, FULLY SCREWED, NEED ASSISTANCE!" and I thought "wow....people must think I am one lazy azz rollling on the scooter. That may be why I didn't get a smile from that other girl, or most anyone. Perhaps if I had a back brace, walker, oversized shoes and smashed eggs in my basket....they'd be lil more compassionate.

I don't blame them, all they see is a healthy, young dude in a scooter.

After getting my stuff I headed to the "handicapp" accessible checkout , yoo know....the one with the giant handicap sign right below the checkout number. The girl working at that station was completely hot and I got a fast onset of nervousness that she too would not even stare me in the eye like I am some freak. She asked me how are you(like you would a child She asked me if I have a rewards card, I said yepp, but not the card itself, I'm in the system" she asked me to type in my phone number(If I am able) LMAO! Ok....did I all of a sudden start looking disabled? Well I got that done then she asked if I wanted all of the stuff in one bag, I said yes. Must be she was thinking it would be easier to carry just one bag? Well she was right I think. Ok now she asked me if I need help to get it out to the car....This is when I flagged my mom standing there and told the girl I'm all set.

So in conclusion, that was my second adventure in store scooter driving lessons. It was just so weird at how different things are when in that position. I was literally being looked down at and felt like a total stranger like I shouldn't be driving that thing.

I dunno....just weird, but I'll get used to it. I just really hope and regret if I ever get a dirty look or someone asking me what exactly is wrong with me, in a smart azz fashion.

Guess I realized just how hidden the MS Monster really is..... I may just stick a cane in the basket next time....so people will think..."oh...he has a problem"

Ok....vent over </done>

yeah, that's kind of why I started carrying a cane, so people wouldn't give me the hairy eyeball in stores.

Then when I got my AFO (Ankle Foot Orthotic, for drop foot), I noticed that people seemed a bit more sympathetic, because I've got something obviously wrong that they can see now.

I'm having a bad week. I'm really walking weird. I was doing that a couple of months ago, and thought that after about...30 sessions of physical therapy things would start to feel better. I was sort of right about that. I was feeling pretty good about three weeks ago. But, that only lasted about a week. Things started going all to crap again, and now I'm back to walking weird again. Which is really ticking me off.

I really wanted things to be "better" by the time my birthday got here. My birthday is friday. Just makes me want to cry. I feel like crap this week. I haven't called my neuro or my doctor because I didn't feel like they even cared much that I was having problems when the flare that made me start walking weird again earlier this spring started. My regular doctor did give me the PT at least.

I'm just really disappointed that I feel like crap still and the MS wouldn't cooperate with me wanting to feel better on my birthday.

Erin I remember how I felt when I finally got that letter from Social Security granting my disability. I mean I had prayed, worked hard, payed a lawyer, wanted it so bad and here it was. And it said permanently disabled. It hit me hard. Here I was, barley 53, in the prime of my career, making good money. Permanently disabled. What a label. But then I realized some of the things I did before I realized I was sick. I had hiked around the Grand Canyon, I HAD worked full time. I did that while I had MS and never realized it. So I must still have something in me. Yes, you do have to redefine yourself. Find out who you are again, who you can be. I once met a lady who had had MS for many years, completely wh/ch bound. She couldn't even transfer herself to the commode yet she and her husband had developed a wonderful new occupation for the two of them. They had a full and wonderful life. They just had to take the time to reasses who she was and what she COULD do rather than what she COULDN'T do. Now I realize you are younger but there are still many opportunities out there for you.

The first time I rented a scooter was for Disney World. I wouldn't have been able to see Disney World with my grand kids at all. I can't imagine not being able to do that. But just sucking it up I had a wonderful time. And my little grand daughter had an extra seat to ride on occasionally! When we went to the mountains for our vacation this year I was able to hold her on my lap and help her as she took her first ride up a tramway to get to the top of the mountains. She was scared to death, but she had a Grandma that could hold her on her lap with her arms tightly around her and help her through it. Plus we were able to get on the tram first and sit right in front of the window. There are perks!!!!

I've been trying to get disability. I was in the middle of the latest big exacerbation and could barely walk when I saw the disability neuro. Still got denied.

I didn't appeal it again because Real Life interfered (parents have been sick) and I was sick again (killer fatigue) and I didn't get the appeal started in time. So I guess I have to start all over again. I'm not sure at all why they deny it. It's obvious when I can't walk across a room without a cane (or at times, a walker) that there's something going on. I'm just tired and a bit annoyed at the MS.

Eric, I was listening to a morning radio station last summer...the guy was making fun of people in store carts, stated that most of them didn't really need them, were just lazy.
I called him immediately and he answered the phone. I reamed him about what he said...told him many people like those of us with MS don't look like we need scooters, but we know our bodies and take care to make sure we can function with helpful aids.
What did he say? He denied making fun of people in motorized carts. I got into a heated argument with him, but got no resolution. I told him he needs to apologize on the air. He said "I have nothing to apologize for." I don't listen to that station anymore...

People look through those who are disabled or aged, ignoring us as if we aren't there. I didn't notice until I became middle aged. Now I make sure to look WC riders in the eye and say hi in passing, and smile and acknowledge the elderly.

Nothing like having a disease or getting older to walk in another man's shoes...

It's a hard pill to swallow, Eric. Very humbling. It's certainly made me a more compassionate individual. I feel sorry for those who feel they can't take the time to be kind or share a smile with someone.

I'm a lot more compassionate towards people now since I have been needing assistance myself. It's unfortunate that people would not be like this without needing to experience it for themselves THEN "knowing"

I was never a rude person to handicapped people I would help when asked, but I usually never went out of my way for any of them. Back then it was just another old fart in a scooter and random paralyzed person in a Quickie. I never payed much attention and sometimes even got annoyed if they were holding me up trying to get around them and the scooters.

So tables are turned now and now I am "getting" what they all have to bare and it sucks.

I admit most people are good with me in these situations, but the fear of getting a dirty look or "get out of my way, comment or something, will be quite hurtful. One more thing I'll have to grow some nuts for I guess.

Thanks Eric. I felt as though I was reading the short version,
of the story of my life. Your attitude is great. Keep it going.

Sometimes the toll this rotten disease takes on us just,
sucks the big one.

Well said...........

I don't know how you think my attitude is great, but thanks It's all just new and weird. When I sat down on that scooter I was like "Oh man, what am I doing and it just felt weird.

I really could of walked in the store though yesterday, but I decided to save a lil bit of energy in the humidity. I felt pretty weezy from it.