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puppylove

Hmmm Wheel Chair Or Not?

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I think I posted something similar to this a while back, but I just can't make up my mind this time. This weekend my twin sister and I are having a sweet sixteen party, and we are going to the county fair with our friends. I definitely won't do most of the rides, but I like the other stuff. Anyways, whenever I do stuff like this I only enjoy myself a little because it just makes me feel so sick. The heat, endless standing and walking, lights, noise... I just tried a small amusement park with my family today, and I felt really bad. I'm sure I could use a wheel chair at the fair. I just have never used one before and I would feel so self conscious, especially in front of my friends. I guess since I would enjoy myself so much more, I should just say forget what people think... But what if I want to get up for a few minutes, people will think I'm a faker or something. Ugh, I just can't decide. What do you all think I should do?

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Do what you have to do to live a full life! Just don't become too dependent on it ;) also, you could put a sign on your wheelchair that says something like " I'm a fainter not a faker"

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Use it :). I totally get that it's hard to overcome the "what will other people think?" mentality, but it's your birthday and you should get to enjoy it! I started using a wheelchair last year when I was out with someone else (we have three little kids, so my hubby couldn't push the chair and stroller by himself), and it was AMAZING the difference it made. I was totally shocked! It let me actually enjoy what we were doing rather than trying to just survive it. Ignore what other people think - I know it's hard, but it will get easier each time you do it. :). I also always felt silly sitting down on the floor in a store - until my wise husband pointed out that it was better than fainting and hitting my head. Sometimes there's not a perfect option, but one is definitely better than the other! :)

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Oh hon, I get how you feel..... I would like to enjoy venues like fairs and amusement parks with friends, but like you, prolonged standing, heat, exhaustion, all make them dreadful places that I wanna love, but hate at the same time. Well, I have two little kids who love to go to such places in the summertime, and if not for giving in to my insecurities about what others would think if I were use a wheelchair, I would miss out on the fun. Like you, I'm able to get up now and then, but definitely need to be able to sit down when I inevitably get to feeling icky from it all, and I worried that people who see me riding in a wheelchair looking perfectly healthy--as you know how much we get the classic "but you don't look sick"--get up and start walking around will think I'm faking it. Well, let me tell you something that I friend of mine told me that finally convinced me to let go of what everyone else may think. Anyone in there right mind whom sees you riding in a wheelchair among young friends your age and having fun, even getting up now and then and then having to sit back down, will know that a teenager wouldn't just sit in a wheelchair at the fair, at an amusement park, at a shopping mall, at whatever just for the fun of it. No, anyone in their right mind will assume you're ill and need it, fair and square. And anyone whom thinks--or insinuates--otherwise, that you're a faker, well they're very shallow and you shalt not be concerned with them anyway. I say, do whatever it takes to have fun when you feel well enough to do it. If that means riding in a wheelchair now and then to do it, then so be it. If that means pushing around a rollator walker when you need it, then so be it. All of us potsies know that tomorrow we may not feel well enough to go to the fair--even in a wheelchair--so if you can do it today girl, then do it!! You know what I have on the back of mine to keep it light and fun--a sign that says, "My other ride is a Beamer!" You only feel inferior when you give others permission to make you feel that way.....never forget that, hon!

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In practical terms, it sounds like a smart move. Check out what the wheelchair access is like, how hard it will be to get a wheelchair, and also make sure that you will have someone to push it (assuming you can't self-propel) and that you won't end up isolated from the rest of the group. If you have the option, get a wheelchair which has large wheels at the back rather than small wheels throughout. It's easier for the other person to push, and it's also handy if you want to get yourself a bit closer to things, for instance getting to a shelf in a shop.

In psychological terms, it's a very personal thing. The first time I went out in a wheelchair, about twelve years ago, I was fairly nervous and found the whole thing intimidating. You can't reach a lot of things, you feel helpless, you're at child height, and you don't get looked at in the same way. I ran into a man I knew from university when we were in the supermarket. The last time I'd seen him, he'd been trying to get me into a bed (total lech). This time, he saw me at the other end of the aisle, stared at me, put down his shopping, and bolted. So I promptly burst into tears, and I think this is generally one of the reasons why it took me a long time to get used to wheelchairs. It really was bad luck to get such an unusually bad experience my first time out, though.

I've also had great experiences in wheelchairs, and known people who did much better with them from the start. Smiling at people can help. You will get the odd look if you - gasp - get up and walk a few steps, but it's best to ignore the looks, and explain if you actually get comments (rare). I wouldn't say that side of things has been a problem for me, to be honest. What does make it a lot easier is reducing the other factors which could be distressing. Sensory overload does not improve matters. Being able to talk to people easily, for instance because they're sitting down and it's not too noisy, makes it a lot more pleasant. It's also important to think of a wheelchair as a tool that enables you to do more, that really helps. Zooming around hospitals (sensory overload ahoy) is far easier with a wheelchair, and it's so nice not to have to worry about simply getting from A to B. Going out for a spin just for the sake of getting some sunshine and seeing some trees, with someone who is perfectly happy to push the wheelchair and will have a chat, can be lovely.

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Thanks everyone. I was talking with my family about it and they said they don't think I need one, and I shouldn't get one. I'm really surprised. I didn't think they were going to say that... Stuff like this just really makes me sad. If my own family thinks it would be dumb for me to use one, then I can't help but feel like I shouldn't use one. But I don't want to just walk around in a daze feeling sick and dizzy and survive my sixteenth birthday party. I want to have fun.

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Will your family be there? I think the other main reason I hated using a wheelchair for years is that my family was nasty about it. When you have supportive people around instead, it's entirely different.

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Yeah, they will be there. I'm going to try and explain to them how I know I get through it without one, but I'm not having fun.

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Your family probably doesn't understand what you go through, it is hard for others to sympathize with pots symptoms and how truly awful they feel. They are probably also worried about you becoming too dependent on it. It also affects them psychologically to see you in a wheelchair. When anyone is ill maximum mobility is always a goal. I remember when I was on the hospital they made me walk every day- I hated it but it was what I needed. But just this once might not hurt. When I talked to Dr. G in Arizona, he stressed the importance of remaining mobile and continuing to push. If you decide to go without the wheelchair I strongly suggest compression socks and an abdominal binder. They make a world of difference for me. When you say you feel bad, is it nausea, palpitations, fainting feelings...? I can push through most symptoms but man the palpitations really get me.

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Puppylove, I'll be the first to tell you not to go into a chair ----full time -----but, for something like a fair or a park - most definitely. I learned the hard way with a terrible broken ankle/leg what full time use of a chair can do. It made my POTS sooooo much worse and I got even more de-conditioned from having to use it full time for about 6 months. But, I still - without fail - get a riding cart when I go to the parks. I would not get very far, at all, without one and for sure it would be torture rather than fun. I hope your family will see that you don't want to "depend" on one - just occasionally use one - so that you can enjoy yourself.

Issie

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After a couple of the tests at Mayo, I had to have a wheelchair because I was too weak. I definitely felt like a faker, but I knew I needed it. Do what you need to do for your body.

Our county fair was last week, and totally not fun. I was out of breath and had a horrible migraine and palpitations. I didn't go on any rides, just judged horses, entered into a floral design contest, and walked around a bit. Mostly I sat at a picnic table though with my head laying on my arms because I felt so sucky, I kind of wish I had a wheelchair. So, yeah, a wheelchair would probably help you, even if you feel weird doing it.

I also understand the family thing, even after talking to the doctors, my family all still thinks that it's an anxiety thing and that if I were to use something like a wheelchair, that I'd just be lazy.

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Oh sweet- I can totally relate. The fact that you even want to go is a great sign.

My family and I recently went to New York City and I thought about a wheelchair- my hubby said no. He is usually so supportive and understanding but I think the prob was him (like what Lemons said) so instead I bought a seat cane (for about $35) on Amazon. It was a Godsend and I found that walking was good for helping me pump the blood back to my head and when we stopped in line or on a tour I could just have a seat anywhere. Then when sitting in restaurants or even shows I had my own footrest which I used almost half as much as I used the seat. I never used the cane part but I found kids loved carrying it for me or wanting to sit on it.

Now I only use it when I know I'll have to stand for more than a couple of mins. My hubby jokes that I am his "elderly wife". Now we just laugh about it.

I'd also suggest a good pair of ear plugs (or even an iPod w your fav music to drowned out all the outside crazy noises) and maybe even a cool vest... Best of wishes to you. Let us know how it goes.

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Oh I hope that your family can be supportive of whatever you decide. A wheelchair can be nice for events every once in a while and can help with symptoms.

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I am going to stray from the group and offer a different perspective. There is absolutely nothing wrong with using a wheelchair. I would say think about getting a wheelchair for the long run, but maybe not on your special day. It may take you time to adjust to it mentally and maybe now is not the best time. Also, when you are ready for one I think you will feel it in your heart and there will be no question

Also, one thing in your post struck me - you went to a small amusement park with your family, you felt bad, but you were able to go and you made it. You didn't wind up in the hospital, faint, etc. Speaking from experience, when you keep doing these activities over time it actually gets easier. When you get stressed, just remind yourself that you did it before and made it.

You can also prepare for the day by loading up on fluids before and during, bringing extra medication, taking breaks and lying down etc. just my two cents.

Edited by yogini

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It sounds like you may need to weigh up how exhausted you'll get without a wheelchair vs. how unhappy you'll feel if your family have a go at you about it. Perhaps ask a friend to push you and also to keep your family off your back?

I've known a few people who use those walking sticks that turn into seats, they rave about them. That might be a good compromise. There are lots of reviews on Amazon. I've not tried one myself, I've got severe ME and I don't think I could manage the weight or extra stuff (I trip over my walking stick quite enough already).

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Well, think about how you would feel without one and with one. I went to disneyworld with a wheelchair, at first I was super embarrassed, but then as time went on, I didn't care how people looked at me. But my opinion is that you should probably get one, at least for reassurance. If you need it, it's there, if you don't need it, you don't. It just depends on how you feel. Good luck and have fun!

Kayla

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Thanks! :) I decided to get one of those little fold up chairs and carry it around with me. If I really feel bad I might try to get a wheel chair at the fair, but I'm going to try not to.

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oooooh, i have struggled with this issue, puppylove! you would think that the last thing we'd be worried about is what people think of us in wheelchairs, but i struggle with the same thing! i also feel kinda guilty, like, hey i can walk, why am i in this thing, and people will think i'm nuts if i get up and move around. but i know it would be absolutely necessary for me in certain situations. i couldn't handle a tour i was on recently and had to leave early. i was able to stand for about 45 minutes, but i was very lightheaded and uncomfortable and kept wiggling my legs and squeezing my calf muscles. i hope you enjoy the fair.

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It went ok. I didn't feel great, but I made it through. :)

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It went ok. I didn't feel great, but I made it through. :)

Your comment is so true for what I think we all say, "I made it through". I often will tell my wife when she will ask "how was your day" and I will say "I made it"... and not joking, just glad I made it another day. THIS IS NO WAY TO LIVE LIFE! I SO hope we all can start living life and find solutions!

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Just to add my $0.02 - I have a small folding stool that I got from REI that lives in my backpack. It's useful for museums, bus stops, farmer's market, etc - but not for waiting in line, because I have to keep getting up to move it. A taller stool might help with that somewhat, but for lines a wheelchair or walker does seem like the ideal (because it has wheels!) solution.

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Awesome! I think it's great you "made it through". It is all relative. It is a big moment for a POTS patient to be able to survive a day like that and do something that feels "normal". So happy for you!

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