So I Need A Mechanized Wheelchair...

[Kkb1216]

Well, had a couple of Dr's appointments late last week.

While walking down the hall with my cane, I got dizzy and missed my footing. And I fell right over again. Except this time the entire office staff and two doctors watched me do it. Beyond embarrassing since all of them were looking at me like I was a bomb about to detonate.

My Dr. asked me if I had thought about a chair. We discussed it, and since I am weaker than a store brand kleenex, she wants me in a mechanized wheelchair.

I don't go out much anymore. Before this happened, I was working full time at a job I loved, going to school full time and managing all the other life stuff. It's like I have gone from 60 to 0. Instead of speeding up through life and plowing through, I'm stuck in this quicksand.

My husband was with me and told my doctor I hadn't been leaving the house unless I had a doctor's appointment. Sometimes this is 3-4 weeks at a time. I fall so much, and after walking to one shop, or restaurant, I'm exhausted. It just hasn't been worth the days of rest I need afterwards.

So now I will have this thing that will propel me back out into the world. I've tried to make jokes about it. Popping wheelies. Playing Grand Theft Auto through the perfume sprayers in the mall. But it's really all a lot of fluff to cover how upset I am over this.

I know logically this change is going to allow me to leave the house and participate in life. That shouldn't be scary. But I don't like the looks people give me when I struggling with my cane. Now I'll wheel around looking up at everyone, and them down at me.

Since my arms are week, I'm supposed to tell the people who fit me that I need a joystick. I have no idea how insurance works. I could be worrying over nothing since I don't know the chair has been approved yet.

I've asked to rent the chair in case I get to feeling better in the next 6 months. I just can't accept this will be my life permanently. I don't know why everyone thinks Hope is a good thing. Right now, Hope maybe keeping me from moving forward into a different future. I know I am hoping for a miracle. They do say, what you resist persists, I know I need to find how to surrender.

So I need a mechanized wheelchair...

For any of you out there who use a chair, how has the experience been?

For everyone else, how are you handling all the changes you've had to make? How have you reconciled the feeling to find some positivity?

Thanks,

-K

[Becia]

I use a manual and a electric chair. The manual is for when I'm at home, or out with friends, because only one guy has a lift for my electric, and my body varies in letting me push myself, or having to use my legs to pull me. Some days I can manage it, and I joke it's my workout. Other times I'm like "alright, push the POTSy, because POTSy don't have it today".

My Jazzy, as I've named my electric chair, actually came around by accident. My doctor mentioned he wanted me to keep as much independence as possible, and that maybe using an electric chair to get outside and enjoy the fresh air would be a possibility. I agreed. Two days later, a lady from my church called and said there was someone selling theirs, and asked if I was maybe interested. They church bought Jazzy for me, a $6,000 machine, they paid $200. At first, she was intimidating. I didn't have the mental image of wheelies, I had the mental image of getting hit by traffic, because I was crossing a street and passed out. I was so so scared.

I made myself use it to take the trash out, down the hall of my apartment. Wow, that was kinda nice! No balancing on legs and exhaustion. Just put can on the foot platform and go. Decided to take it outside my floor and went to the lobby to chat... Wow, not so tired and dizzy. Finally made myself go down a few blocks outside, and into a store with it. While that was nerve wracking (kept thinking I was gonna take out a display or two), when I stopped to pay my rent, I was shocked at how much energy I felt. I hadn't driven in over a year, and here I was going places for myself!

It's truly helped so much for me, both chairs have. I can safely manuver how I need to for my body. Sometimes I can manage chores with my manual, other times I break jazzy out indoors for them. If I need a gallon of milk, I can go get it myself instead of begging friends. I can get to church myself (I come home after to switch chairs to go to lunch with friends), I can go to social events... Before, I just sat at home, because I had a hard time simetimes, finding rides to things. People worked, I dont, and it was hard. Now, I can go participate in life again, safely above everything.

I've made a lot of changes, and going from an able bodied human to in a wheelchair in 6 months, was very hard, not lying. But, having my chairs has opened up my independence and mindset so much. During Christmas, I was really depressed, so at one point, I just got out and went down the street to see Christmas lights. I couldn't do that before.

It's gonna be a challenge in the beginning. There are times I am still challenged by Jazzy... But then I look around and realize, I came to the store alone, and I can buy tampons without embarrassing my guy friends who typically push me through the store. Some guys handle that well, others are like "really, I gotta watch you chose tampons?!"

Grand theft auto... lol, I'm trying that today, I'm going to the grocery store in a bit for a few things I forgot yesterday... I can see it now... I'm gunning for my friends husband who works in frozen, and my chatter guy buddy who works in the meat department...

[maggie]

I understand your feelings about this. I was in an electric wheelchair for two years. I sat an looked at it for months, just didn't want to go out in public in one. I finally over came my pride got in it and away I went. I now can walk everywhere I go again. It took a lot of hard work but I did it. My advice is use it when you need to and hope that this will not be forever.

[dizzyallie]

I hear u. Someone mentioned it to me, that perhaps it would help me but ive resisted but like u, I'm that dizzy that my stick doesn't cut it. It only helps marginally to prop me up. I know sitting would help tremendously but I just don't want to start down that path til it becomes unbearable. Mind u, its pretty awful everyday but I'm not ready to make that leap. I'm sure one day I will tho. Especially with vertigo spins like this morn when standing. Like u said,it puts u at risk for falls. I dunno, its hard.

[Kkb1216]

Thanks everyone!

Becia, I am so glad to hear it's been a positive for you. In my head, I tell myself it will be positive. My heart hasn't quite caught up yet. It will get there. I am a little worried about running into things/people. I am told it will happen. I'll just have to hope I catch on quick? I've been looking at some Jazzy chairs. The insurance called to say they need to find a provider in my area. So once I actually see what I qualify for, I can stop all this wondering!

Maggie, thank you. It picks me up to know you've gone from chair back to walking. I don't want this to be a permanent step in my life.

dizzyallie, I totally get where you are. If my Doctor hadn't seen me in heap on the floor, she and I might not have had this conversation for a long time. Everyone's issue is how long I am at home alone without help. And, I've begun to look like I am a football player who doesn't wear pads. Sigh. We all take this at the pace we are meant to.

I am so glad to have heard from all of you. I'm moving forward. I just haven't quite found the smile part of all this yet!

-K

[Becia]

You will hit things, but then you will learn your machine, how your hands will operate the joystick, and you'll find a comfortable position to sit in that optimizes everything. I Still have moments of being imtimidated, but you do get the hang of it. My intimidation comes from the sidewalks and trusting my jazzy to make it across some of the rough spots I encounter without issues. You will get the hang of it, just gotta go out there and try it. Start small, don't go on a one mile "walk" right out the door.

I also jokingly forwarn people that I'm a bad driver, watch their toes. I have yet to hit a person. I did hit a bird once, but never a person.

[corina]

I have used one two for several years and once I got it it gave me lots of independence! I didnt think I needed it when in reality I did. I could go out on my own again, browse bookshops get fresh air and sunshine! So for me, it was the best decision! My local government pays for (electric) wheelchairs (Im in The Netherlands) so it didnt cost me anything and as soon as I didnt need it anymore (due to finding the right for me combo of meds) I happily gave my wheelchair back!

[Katybug]

Hi there. I don't use a wheelchair full time but I have asked for a wheelchair assist through the airports when I have traveled the last 2 years. Honestly, I thought people might stair but in reality they didn't. I had one little kid ask me why I was in the chair but he was being a curious child and not rude. I explained to him and his mom apologized for his question but I told her I think it's good he's curious and not scared....that by understanding he would grow to be respectful of people in wheelchairs or braces, etc.. I ultimately found that it's me who assigned judgment to the situation ahead of time and not other people. It truly made my visits to my dad possible...I never would have made it through the airports without the help. It made me weigh what my priorities truly were...seeing my dad vs. worrying about using a wheelchair. Lucky for my dad, he won that battle! Lol!

[Becia]

Lol, my friends have seen me try to walk lately, my joints are so loose and I'm so symptomatic most of the time that one said it reminded him of a newborn giraffe, and that's not a cool way to look. I guess trying to stay upright when the blood pooling really hits, and keeping my legs in the correct place (they form a C when I stand upright), it looks goofier than me whizzing around the corner for a drink at the corner store.

You'll get the hang of it. I think SarahA33 put it best to me one time "think of the end result." The end result will be your independence, and saving your energy.

[Kkb1216]

Hi all,

Insurance has been back and forth with my doctor. So we are moving forward at least. I fell at physical therapy and tried to faint in Best Buy. Hilarious to watch all the blue shirted young people run around with their phones out staring at the bright screens while they googled "middle aged woman falls over in store-now what?" I laughed like a loon with I got back under control.

I've come to some sort of cease fire with this change, maybe even a little peace. I talked it over with my PT group of folks, and all of them agree it will make me feel much more confident, and stop some of the deeper, darker blue days I've had lately. I am sure my attitude will need more adjusting.

I've planned a couple of day trips into the local area to see historical stuff once the contraption gets here. Being able to know no matter how the day is going, I can still have a level of participation has been a great mood lifter.

So, I am sure like so many of you, this is a HUGE work in progress.

Oh, the PT people said to make sure I get one with the ability to tilt somewhat and elevate my legs. I wouldn't have thought of that on my own.

I appreciate all of you so much for the wisdom and kind words. It sure makes it better when you have a people to chat over things with. Share and such.

-K

[corina]

I know it's a hard decision to make but hope it will give you loads of independence and happy sunny days K!

[Becia]

My doctor said the same thing about the elevation! I too think that would be nifty, but I'm kinda partial to the heavy duty machine I have now...it takes the sidewalks of my town better than anything else I've seen in this building, which people have quite a few motorized chairs. One guy broke a wheel, another guy pretty much took out the axel in the back of his... Mine keeps trucking over rough terrain. It's worth the stability, as I'm not out unless im fairly stable on it, and am at a time I can tolerate my feet down.

[corina]

Mine was really neat! A Permobil, adjustable in height (really handy when doing a little grocertyshopping or socializing when everyone is standing!) and back and feet. I could be supine when needed (very handy when on a family outing and when in trouble of course!). Just thought to let you know in case you'd like to shop around to see what possibilities there are!

[mewinston]

I'm in the same place you are. I was carted through my last year of high school occasional in a wheelchair, (what time I wasn't in a crib in the nurses office) and I've used them in the hospital, but the other day my mom had to use one for me in Walmart. I was really worried about how people would react seeing me walk in, then sit in the chair, but the clerk was actually really helpful. My mom, slightly embarrassed, explained that I'd been having a lot of seizures lately, the short version of "my daughter came down with a mysterious illness when she was seventeen with super weird symptoms and is now almost totally dependent on me." He said "No problem, and helped us learn how to operate the chair. Other shoppers didn't give me to many weird looks while my legs shook and my mom and sister traded off between who was going to push me and who was going to push my little nephew. My nephew thought it was totally novel that his aunt was also in a cart being pushed.

Anyway, I asked my doctor for a prescription so that my dad won't have to carry me. He's disabled with POTS as well, so he can't be lifting 145 pounds. I have the prescription but have no clue where to fill it, and I still have reservations about actually using it. I feel like people think I'm some sort of liar because I am able to function almost normally at times.