When do you start getting the store-rent-a-scooter?

Bit down today. There is a book signing in my area and I really wanted to go, but reality set in. You had to be there early to get in line to get wristbands, then two hours later the book signing will start (another long line I'm sure). When I thought about it, I knew that even though I'm feeling pretty good today, there is no way I can go to the mall and stand in line for hours. Even though I feel pretty good today, that would set me back. The only way I could do it would be to get a wheelchair or scooter. That made me feel like crap. I'm not ready for that yet. I guess God has other plans for me today. But when are you ready for those times that you know you're feeling ok, but to do normal things, you'll have to go the scooter route, even for a little while? When do you ask the doctor for a handicap parking placard? I can walk fine, as long as I'm not having a flare; but if I were to walk the mall, I'll be in bed for a couple of days. When and how do you come to that place of acceptance in the inevitable?

Hi,

I am 43, and have been living with PsA for about a year now. Like you I have flare ups and downs. Each day brings a new challenge, but I try to live as normal as I can. I will not let PsA get the best of me. I will still go and do as I please. Yes sometimes I pay for it, but most of the time it is worth it. I already have the handicap parking card, but I try and not use the crutches, cane, or wheel chair if I can help it. I also try and plan to be either early or late for most things that require me to stand in line. Just a little planning can go a long ways for you to enjoy life. However; if I need a crutch I will use the crutch. We can not be ashamed to use what we need to. That would be letting PsA win out over our lives. Be proud of the person you are, and do things despite PsA. Only you are able to really know when you are ready to move on with the devices that help you. It is not a sign of weakness, or old age to use a device. These devices are just tools for us to have a better life than just lying around on the couch and watching tv. So get out and do what makes you happy, just find the best way for you to do it.

Good Luck!

Tony

I know exactly where you're coming from. Been there, and recently. It makes me feel down as well. It's the whole "giving in and giving up" thing, even though you know that you really don't have a choice. It's either the wheels, or it's the pain. So I started choosing wheels last fall. It gets easier as time goes on, but the truth is that I still hate having to do it, and I don't know if I will never really accept it as long as my legs work at all.

My family doctor totally gets it, thank goodness, and when I swallowed my pride and asked her whether I could possibly have a handicap parking permit, she answered "You SHOULD have one, and I want you to use it." Of course, that was all I needed to start the tears. We talked about the store scooter "dilemma" (as if it's a dilemma!) and she suggested that I could look at it another way: people pay money at the midway for rides like that! She suggested I might let that tickle my inner child. Well OK then ... ;-)

I also bought a wheelchair a few months ago, when we were going on a cruise. (I actually considered cancelling when I thought of having to walk the distance between our cabin and the dining room, and then I gave my head a shake and came to my senses!) I did find that people react a bit oddly to people in wheelchairs, but I developed a few good one liners that break the ice. ("After years of me pushing my husband around, it's come to this ...") And I would sometimes walk short distances, pushing the chair. ("My imaginary friend gets to ride until I my pain gets too bad and then it's MY turn."

I guess the bottom line for me is, it'll never be easy, but if I'm going to get out I don't really have a choice. And getting out, going places, and doing things is essential for my mental health. Yours too. Think about that.

Hope this helps.

Seenie

Wow! I can certainly understand how you are feeling. I've been in a really bad flare for the past few months and walking through the grocery store can be exhausting and painful. I've considered using the scooter with the basket, but always suck it up and lean on a cart (not that it really helps). I just can't bring myself to do it. I always imagine the way people would look at me since I'm only 32 years old.

My husband has been pushing me to ask about a handicap placard so that I can park closer to the stores. Again, I just can't do it. I've always been one of those people who is infuriated by others parking in those spots if they don't need to. I can't stand to see a car without a handicap placard/license plate in those spots. It's so hard for me to imagine being one of those people who needs it. I don't really have any advice. I don't know when you give in to it. I just wanted to empathize with what you are experiencing.

A few years ago I sprained my ankle quite badly. I had you make use of the scooters provided by the shopping center. Some of the looks I got were quite rude. I was 28 at the time.But the thing I learend from that experience, was that whie some people are rude, others are lovely and accommodating. Also not to sweat on what others think.

They do not know you , they are not your friends. They do not know your pain and the reasons that you need a scooter. I feel that should I need to use one either now or in the future (im only 32 myself) that I will do it and stare right back at those that are rude!

I think I have reached a point where I will do what I need to in order to make my life easier.

I can be blunt in person too :)

Louise

Thanks for the great replies, it really does help. I'm just so stubborn and not ready to admit defeat, but I also don't want to hurt for a week because I was an idiot. I'm only 45 and still can't get my head around the fact that I might eventually need a cane, walker, wheelchair or scooter. This is still so new for me that I'm really having a hard time finding the balance of what I can do and what I can't. I still haven't figured out how much I should be active without hurting myself, and how much I can sit around and rest without getting stiff and sore. I have a rheumy appointment this week and will ask if I can get a placard for those times that I'm flaring. For the mall and Costco, I'll just have to buck up and say that I need to trade off the pride and ego and get a friggin scooter, so that I can save the energy for something else and avoid hurting for a few days afterwards.

There, CJCB, that's the spirit! LOL A friggin scooter ... my sentiments exactly. Save your energy for something worthwhile!

Seenie

My husband finally got a scooter last year and it has made his life so much easier. I was afraid that he would give up after getting it but he only uses it when we do shows, have to walk on uneven ground or have to stand for long periods. He really enjoys it and is much more active now. I, however, am having issues about using the handicapped placard. We have one in both cars due to his situation, but I think I need to be added to it. Last summer I really needed to use it but I am always concerned that people are thinking I am lazy and using it because of my size (I am not a 'little' girl). Lately, I haven't needed it but there are occasions when I do need it. I think I will discuss it with my Rhuemy at my next appointment. OK, I will do it because it will help me. Thanks everyone for helping me see this is for my own good.

I went from walking on my own to walking on my own when I could and using 2 canes the rest of the time, to using 2 canes all the time, to using either 2 canes or a wheelchair ... all in the matter of around 3 months. It was a process. But what I realized was, it was quality of life - I could choose to do something I wanted to without assistance and be in great amounts of pain and not enjoy myself, or I could use canes/a wheelchair and not be in so much pain and actually enjoy myself. It helps if you get really cool canes and decorate your wheelchair. ;) Here are a couple of my blog posts on the matter:

http://rannygahoots.blogspot.com/2011/09/next-step.html

http://rannygahoots.blogspot.com/2011/10/dear-ziggy.html

I truly do understand your dilema too. I had to use the store scooter last year when I had a foot fracture. Even though I was wearing a walking cast...people stared at me like I had 3 heads. RUDE I haven't used one since, but I do not do a lot of shopping where I have to walk a whole lot...and I do use a handicap plaqard. I actually had a women stop her car and holler at me that I did not look like I need to use that and she wanted that parking place. again RUDE...I told her I was sorry that she was handicapped and could understand because I do need that parking space close by as well. She huffed and drove off. I have just quit my job...have one more week left...and will be trying for disability. I am 54 and sometimes I feel like it just isn't right that I should have to do these things...but also, I like to keep moving as much as possible too, and it is getting almost impossible to work and take care of me as well. I wish you all the luck in the world,

Oh, and I thought I'd add that I have a handicapped placard as well. I use it when I need it, which these days is more often than not. Some days the number of steps it takes me to get to and from the store matters a whole lot to how much shopping I can get done when in the store.

So I am only 28 and I have 5 kids and really wanted to go with my husband christmas shopping but I was in horrible shape, couldnt stand very long and walking was next to impossible but my husband said well we will just rent you a wheelchair so even though i knew that it was the only thing that would make it possible for me to participate in christmas shopping I was really reluctante to be seen in a wheelchair so I agreed to use a chair but only if we went to stores out of our general area so that we wouldnt see anyone we knew and I wouldnt have to explain to them why i was in a wheelchair.......so after that I realized that there was really no shame in them that they were there for this purpose for people who needed them I am currently working on getting a handicap placecard, I just want it for those really rough days but really need it for my kids school and my doctors office which both have huge parking lots which are normally full, I thought for a while that a walker would be good enough but after trying it I realized that the wheelchair was truly the only answer for me, I think that each of us come to the realzation in our own time, and deal with it in a diffrent way, I am still feel silly for using a wheelchair especailly when i have a few kids following behind me but I have learned how to somewhat ignore the weird looks and do what I need for me and my family in whatever way it needs to be done even if it is in a wheelchair!

Good luck with your journey!

Amueller ... I have five homeschooled kids and usually have 1-3 "extra" kids as well. People stare at me more because I'm shopping with 7 or 8 kids than because I'm in a wheelchair. My youngest hops onto the back of my chair in the store and rides - and sometimes I have a child in my lap as well.

@ Nym, go you! i counldnt imagen going through this and homeschooling my kids!!!!

I couldn't imagine going through this and having kids! My hat's off to you, Nym! We both have an aggressive form of this disease, and I simply do not know how you do it. But then again, you do what you have to do. I admire you, really!

amueller said:

@ Nym, go you! i counldnt imagen going through this and homeschooling my kids!!!!

I went to the supermarket the other day, and I heard an echo of CJCB's "get a friggen scooter". LOL .. so I took my own advice and did. I was thinking about that on the way 'round the store and I recalled a lovely turn of phrase that someone on this board used a while ago: radiant acquiescence. Who said it, I don't know, but it's a good one. So I decided to put my "radiant acquiescence" face on, whatever that is. And you know what? I had the most pleasant shopping excursion! Store employees chatted me up, other customers seemed pleasant and helpful, and by the time I drove away, I felt pretty good. Got home, and I still had energy left to put the things away.

Must remember that, radiant acquiescence ... anybody remember who coined this lovely term?

Thanks! It's actually much easier with canes and a wheelchair and a diagnosis - and pain meds that work! - than the years I was told it was all in my head and ibuprofen did nothing. There is a lot of "thinking outside the box" in my family. My kids are VERY helpful (most of the time). My 3 older kids change diapers as needed (usually without being asked!), all of my kids can cook (my 6 year old makes an awesome crock-pot chicken!!!), and they all have responsibilities around the house. Even before my rapid decline in health, my kids were expected to contribute to the cleanliness and upkeep of the household. Cooking is a part of our homeschooling (a great way to teach math :) ), so at least 2 dinners a week are taken care of by the kids most weeks. Most mornings the kids are up and making eggs or oatmeal before I wake up.

As I sit here, procrastinating getting back to physical work (helping the 6 and 3 year olds clean their room), the 1-year-old I'm babysitting is dancing to music, the 3 and 6 year olds are doing an art project, my 9 year old is in the shower, my 11 year old is working on a journalism assignment, and my 13 year old is either writing his 3 minute fiction assignment or practicing his lines (he's in a theater class).

I stand in awe. No, I SIT.

LOL, have a good day, Nym!

Nym, you make life sound magical. Thank you for that, I need reasons to smile, as we all do.

Seenie, I don't remember who said it but radiant acquiescence is truly a beautiful term and I think I too will use it.

I haven't broken down and gotten a scooter at the store yet, but when I do, I'll try to handle it gracefully (I am a Tuesday's child after all). I did get a temp placard for if/when I might need it in the next 6 months. Hopefully the Simponi along with the MTX will do the trick and I won't need it, but I have it if I get into one of those jams where I know I need to go out when I'm not quite up to walking that far.