Wheelchairs, Walkers, Denial, And Acceptance

[all4family]

For the last 5 years I have missed out on so much in my life. Of course for most of the 5 years I thought it was because I just couldn?t handle being in public for emotional reasons. Which really doesn?t make sense. If that were the case I wouldn?t feel just as bad at home, and before I became sick I was a very social person. But whatever the cause I have been very limited on what I can do. So I have been having a real hard time accepting this. I keep telling myself I won?t stay sick. I will be one of the lucky ones that gets better with time. But regardless right now I can do very little without becoming symptomatic. Even shopping. (which I love to do.) After seeing how well I do shopping with one of the electric carts at the stores my family decided I needed one. And I have to agree I was excited to do things again. So my husband talked to a neighbor, who had a electric scooter for 50 dollars. Said it needed batteries, and we should price them before we buy it. So he ran to a bunch of stores before they closed, and found some for 21.00 dollars. So that made the scooter just under 100.00 dollars for us. I was excited to get doing more again, but somewhere inside I was still in denial. Getting on it, and going for a long stroll around the block with my family felt real good though. Now I could go, and not feel like I couldn?t make it back. So I have been using my scooter and doing much more than I did before. But I feel very self conscious when I am on it. Over the last couple of days I haven?t felt good, and have been real snappy with everyone. So my husband went shopping for some groceries, and when he came back he was up at the neighbors house talking to him. When he walked in the door he had a walker with a chair in his hands. I shot him an angry look, and said thank you, then tried to get busy in the kitchen. Not knowing what was wrong with me he asked if I was ok. Fine I said, and then tears just spilled out. It was at this moment that what I have been keeping bottled up in me all came to the surface. Why was my question. Why do I need this? A walker. Old people use those. I really was grateful for the thoughtful gift my husband gave me. There was just an inner battle going on. One that wanted the help, and wanted the acceptance. And one that was afraid of what this meant. Does this make me disabled? I want more than that! In truth the walker was very helpful. After he left for the store a second time (I think he was escaping) I sat on it while I made dinner. I want to do things. I really do. I just want to be able to stand on my own 2 feet to do them! Guess I will have to make this a chapter in the book of my life!

Do many of you use wheelchairs? And if you do, do you feel self conscious ever? How many of you have had this battle of the wills? My will vs. my will?

Thanks for listening

Suzy

[Guest tearose]

I hear you.

I have a seat cane and there are more times than not that I hate it when I have to use it. I get comments, questions, stares, it is bulky, takes energy to carry...but I also think I resist because some part of me just wants to be one of those who "got better" already. It is a reminder that I am too "well appearing" to be understood as disabled and yet not "well enough" to be able to function as a non-disabled person.

Acceptance is a gift. I pray we all receive it as we need it.

tearose

[flop]

I have a wheelchair. My cardiologist wants me to throw it away but I know how much it helped me. I managed to hold down a job for 18 months by using the wheelchair at work when I would otherwise have had to stop working earlier than I did. Using the chair was a strange experience - strangers were fine with me and didn't question the chair but people who knew me could be a bit funny about it. What I enjoyed the most was the freedom that I experienced - I could get a train or go shopping by myself without worrying so much. Even now if I know that I would need to queue for something I would use my chair - I simply cannot stand in line.

I can't use my wheelchair at home as I live on the third floor and there is no lift (when I am having a hard time with my POTS I am essentially stuck at home). However I do use other disability aids at home - I have a perching stool, grab rails, falls alarm, intercom system, shower stool and toilet frame. I am lucky that I have a friend who has been disabled since birth and he encouraged me to take advantage of any gadgets that could make my life easier. A lot of things aren't "official" disability aids but things that I have cobbled together to help me.

Flop

[mkoven]

I have a range of tools I use to be able to get around. I have a walker with a fold down seat, a seat cane, a wheel chair, and a scooter. I always use one of them. I just cannot stand still for more than a couple minutes-- even while waiting for a streetlight to change. when feeling really well, I jus take the seatcane. I also have bad joints, so all of these help both with the potsy woozies and joint issues. I'm no longer embarrassed, but sometimes taken aback by some of the odd things people say, since I'm only 42 and don't otherwise look sick.

[janiedelite]

I got a wheelchair last fall on craigslist for $35. Not pretty, but it works! It's just a pain for my hubby to squeeze into the car. We only use it if we know I'll be up for a long time; we originally bought it for Christmas shopping trips. I also sometimes use it at Costco because they don't always have electric carts. I still use the electric scooters at the grocer. I used to be self-conscious about this but after being so ill last december when I couldn't go out at all, I'm thankful for any energy I have. Recently we bought a seatcane (after hearing Tearose brag so much about hers) . Love it! My hubby carries it for me, and all the elderly people comment on what a cool invention it is! It's much easier for me to take in the car. And if I have a "bad moment" I can sit on it and tell people I have a heart condition. They're usually very understanding. I also have a stool in the kitchen. Our house is only one-level, which is fabulous.

I think it was hardest for my hubby to accept my limitations after my symptoms really kicked in last summer. He would push me to do more, thinking that the more I did meant I must be feeling better . Then he figured out that after these excursions he has to care for a sick wife for hours or days...

[all4family]

Hi tearose, you captured how I feel about the "not being sick looking enough" perfectly. It's like being somewhere in between. I keep being reminded by my daughter (smart little thing she is) that it draws a lot more attention when you pass out, then just using a scooter does. Not only that, but I do not have fun that way, and am not part of what is going on. I am just in survival mode trying to find the closest bed!

Hi Flop, I can't believe your cardiologist wants you to throw it away! He wouldn't feel that way if he had to walk a mile (more like a few feet) in your shoes. That is so much what I want. The freedom. I want to feel independant. I want to go and not think to myself how big is the store, and how long are the lines? Will I be able to make it? Or will I have to go find a place to sit, and never finish what I wanted to do. I can't get my scooter into my house either. (not without help.) That is why I think he got me the walker. He thought it would help me in the house. Thank you for sharing.

Hi mkoven, it just amazes me the way people will react to someone using assistant devices. I always thought the world was more open minded than that, but have learned much different when I got sick. I dont' think my husband understood why I wanted it, but feel so self conscious using is. I am glad that you are no longer embarrassed by using them. I hope I will get there soon, because I know it will give me so much more freedom.

thanks for sharing. It helps to know that I am not alone.

Suzy

[shelby]

I have had to use a wheelchair before and still have it just in case in my car all the time. I do feel like people are looking at me because I sometimes "walk" my wheelchair around. The world is not made for chairs though as shopping I always seem to knock down racks of clothes or other things.

I also have a handicapped parking permit and have been given many glares by people when they see me use it...recently I was chewed out by an older lady because I "stole" the last handicapped parking spot at Walmart. She thought I looked fine so why did I have to use her spot.

I try not to take looks and stares personally, but I understand it can be hard sometimes.

I hope things get better.

Shelby

[all4family]

Hi Thankful, what you said about your husband is so familiar. In the beginning my husband(and family based on what doctors said) would push me. I was going crazy trying to do everything, and would lay down in between miserable. I would push so hard, and end up unable to keep going. After a while like you said they learned that they ended up taking care of me, where as when they let me go at my pace I could at least do more for myself. I am glad that you don't feel self concious anymore about using the carts. But sorry you had to become sicker to feel that way. My husband won't shop with me anymore unless I am in a scooter. The last time he went with me at costco, that I refused to use one, I got real bad, and although I didn't pass out I was close. I was like jell-o, and he had to get me to a chair (thankfully there was one close by). I had to sit there for a little bit just so I could make it back out to the car. So that was the end of shopping for me. I will definatly have to get me a seat cane. I did see one at the swapmeet for 25.00 I think. Thank you for sharing your experience.

Suzy

[all4family]

Hi Shelby, yes! that is how I feel. I once had to get something on the top shelf of the grocery store (this was before I had my own) so I got up to get it, and felt real self conscious. which is silly because I had to get in the store to get the cart somehow. But people do give you funny stares if you don't look "sick" like they think you should. I am sorry you got chewed out by that lady. It's people like that that make the "not taking the stares and looks personal" a little harder to do. Thanks for your support.

Suzy

[morgan617]

Suzy,

I do not ever leave home without my transport chair or power chair. I was self conscious for the first few times, now I don't give a rip. I have never been treated badly or even got any funny looks that I am aware of. It's much harder for me to adjust to how my body is changing than how anyone feels about me being in a chair. Once you accept that you are actually "helping" yourself and the people with you (ask my hubby how much better his back is with me in a chair, than trying to pick me up off the floor) you will never even notice whether anyone is even paying attention. I've never had anyone refuse to reach something for me if Dave is another aisle. People actually seem to love being helpful.

Think about it, how long did you stare at people in wheel chairs before you ever got to a point where you needed one? I never paid any attention past the point of that's too bad they need that and then I was on to other things, like my life. I think this sounds blunt, but I don't mean it that way at all. And trust me, like I said, the first couple of times, it was weird, but I just realized I spent a lot more time wondering what people thought than they ever did thinking about me in my chair.

Use your chair and enjoy the freedom! morgan

[all4family]

Thank you Morgan! You are so right. And that is so true about helping myself, and my family. I know my husband doesn't like having to try and haul me around places, and I know his back is thankful too! You are right. Before I ever needed a wheelchair, or even thought of needing one I felt bad for anyone in one. And if someone does have a bad opinion, who gives a rip, (like you said!)! If they do that is there problem. I think though that it is how I feel about myself being dependant on something to help me. But that is something in me I need to change. I want the freedom, and me sitting here not having it because it means that I am less then I was before is just silly. I have known I have been less able to do things for 5 years. So I just quit. I quit doing things. And that is no fun of a life. I will use my chair, thanks for the boost.

Suzy

[momofsara]

Suzy, Sara just got a wheelchair about 6 months ago. She, too, didnt want to use one. At 29, and living in her home town where she would see many people she knows, went to school with, etc she didnt want to draw attention to herself. And she also "looks good" One of her doctors referred to dysautonomia as a "pretty disease". Sara has come to accept her condition over the years, but still was not happy about the wheelchair. She is gradually becoming accustomed to using it. Its not a power chair, so I must push her as her arms are too weak. We mainly use it for doctors trips, and on the rare occasion she can go to a store with me.

I hope you will be more mobile and able to participate in family outings.

Keep your spirits up and hang in there

We are all in this together.

Hugs and best wishes

Susan

[EarthMother]

I love my chair.

I love my chair!

I love my chair!!

That's my wheelchair happy dance song

My insurance granted me a chair just a few weeks back (maybe two months? I forget) and while it has not instantly opened my world back up (i.e. I'm not going grocery shopping yet) I have been able to get to the park with my husband a few times as well as around the block in my neighborhood which I hadn't done in probably a years time.

For me it is wonderful to be able to separate what symptoms stem from direct OI and which are just mental noise.

It does seem a little strange to have my husband set up the chair and I get out of the car and WALK OVER TO IT and then sit down again. But I really don't care at all about what anyone thinks. It just feels so darn GOOD to be outside in the sun and not feel like my heart is going a mile a minute!

When the chair first arrived, my little dog jumped into my lap instantly as if she had done it a thousand times. Now when I go out she is my mascot.

On my facebook album where I have this picture posted it reads:

"Learning how to push myself.

I am testing the edge of my physical ability and leaning over the ledge as I watch my mental stories.

I am learning how to roll along toward new landscapes and coast until I find myself on the other side of my limitations."

Its all a matter of how you look at it, eh?

Enjoy all that

which is in this moment

all that is.

~EM

[all4family]

Hi Susan, thank you for sharing that. I like what the doctor said about dysautonomia being a pretty disease. It's like if someone can't see with there own eyes your illness then to them it doesn't exist. I hope you wil come to have more of those rare times when sara can go shopping with you. Thank you for the encouragement. Hugs and best wishes to you too. Suzy

Hi EM, I love your song! You look so happy in your chair with your dog on your lap! I am happy too. At least I feel happy! I just have some silly mental block about if I am sick enough to use a chair! I guess if I have been sick enough to quit living for the last 5 years that should answer that question. I love your little poem, or statement. I started writing poems after I got sick, now I am writing a book. Thank you for the encouragement! It helps to know I'm not alone. Suzy

[Ernie]

Hi,

It was more difficult for me to get used to a wheelchair because I had to be pushed and I hate to depend on other people. When I got my powerchair and scooter I felt much better because then I could go out on my own.

I don't care if people look at me strange because my freedom is more important than what others believe.

[ladyt]

hi..

I understand where u come from.. i got my first wheelchair yrs ago.. i tryed to use it as litle as possible, and it limited my life.. Now I have a indoor el.chair a el.outside chair and a normal one.. And some other stuff.. it makes my life more of a life.. i still somthimes feel consiuos about using it, spessially when meeting people that i sort of know ..

So when i dont think about what others are thinking and feeling bad for my self for being ill.... well i love my wheelchairs too..

[Lizzegrl]

I am getting to the point that I've had to consider using the electric carts at the grocery, and have started using my handicap parking tag. I don't like doing it, but when I'm so sick I don't know if I"ll make it into the store for my medications, I force myself. My therapist specializes in treating people with chronic illness, so she is working with me on the acceptance issue. So for, that is the most difficult part. That, and telling people I have this condition, and it isn't going away.

I don't want to be considered disabled. It is a label I've not accepted or a limitation I want to accept I guess. For me, small steps toward accepting it, have been easiest. Use the parking pass at the pharmacy, use it in the big structure when I knew I wouldn't be able to walk down 4 flights! In my home, my latest concession is placing a chair in the bathroom, so that I can sit while getting my hair and make-up done. it just makes it easier to sit down on it, and then continue. Small steps.

[all4family]

Hi Ernie, I so relate. I hate depending on people, but find myself doing it more than I would like to. And I can look at the walker with the seat as a freedom, because so often I will start something that requires standing like dinner and not be able to finish, unless I clear the counter and lay on it while I cook! I have done that! So I can look at it as more independence, rather then as being dependant on it. Thanks for sharing.

Hi Casper, I am glad to hear that you have come to use your chair more now, and that you love it! I is encouraging to hear about the freedom that the wheelchair seems to bring everyone, and as you say makes your live more of a life. Thank you for sharing.

Hi Lizzegrl, using the electric cart at the grocery store was actually the first time I went shopping where it wasn't run in grab the stuff, go to the bathroom, sit in there for a while, then go to checkout, find shortest line, get confused paying for stuff, make up strange excuses for my confusion, go to car, lay down for at least 30 minutes, Drive my 3 minute drive home, have someone else get groceries, go lay down the rest of the day proud at what I had done! The first time I ever used one was before I knew what was wrong with me. I had fallen(because of my imbalance) and twisted my ankle, and couldn't stand on it. So we got a cart, and I was with my whole family, and my husband was asking me what I was doing because I was having such a good time, and picking stuff out. We ended up with 150.00 in groceries, and he said we better not let you go on one of those again, I'll go broke! But it was a lot of fun, and I just chalked it up to having a good day. It was funny but I had a lot of good days when my ankle was twisted. Now I know why. I am glad you have a therapist trying to help you with acceptance. I know exactly what you are saying about not wanting to accept the limitation. I think that is a lot of how I feel. If I accept this does that mean it is not going away? I hope that one day we will all have acceptance. Of course I hope even more one day we will all be better! I guess that is all we can do for now!!! Thank you for sharing that, I am glad I am not alone.

Suzy

[Lizzegrl]

All4Family~ I've actually used my handicap parking tag two days in a row! It was a big victory for me, because it didn't feel so hard today. It felt like saving that little bit of energy walking across the lot, meant I could actually take the groceries into my apt. without having to take a rest before I could manage. Lesson learned from my therapist - it isn't accepting a limitation, but accepting a mechanism to open up other possibilities.

Your grocery shopping experiences made me giggle, because that is soo like me! I've actually switched stores because I had to leave a full cart in line so I didn't pass out and end up having them call 911! I would rather get out fast to my car and rest, than hit the floor once more. Part of my acceptance is moving all scripts and shopping to a smaller store that I have a hope of making it through.

I have to say, I'm very glad to have found this place. It means so much to know that my experiences are not unique and I'm not alone in this fight.

[all4family]

Hi Lizzegrl,

Congratulations on your victory! It is so important for us to be able to accept the help. It makes such a difference in our lives. Having energy to do other things is to important. I unfortunatly keep being reminded of how important it is because I keep going through real bad spells where the floor and bed is my life. I hope that will change soon.

I am so glad that my shopping excursion made you giggle. Laughter is so good to do. It's good that you left the full cart in line. I had to switch from my favorite store because I wasn't that smart, and fainted! And the worse part was I was on the scooter! That is a good idea to move your scripts to a small store. I am hoping everyone will forget me at the store I fainted at, because it is close to my house, and small. I want to go back, but feel so embarrassed.

I am glad to have found this site too. When I come on here and share stories, and others share too, I don't feel so alone. My family loves me, and they care, but the one thing they can't give, (and I am very happy they can't) is understanding of what this disease is like. They have understanding from seeing me, but it is not the same as others who have experienced what you are experiencing. It's validation! Take care, and I hope you keep using your parking pass.

Suzy

[masumeh]

I have a wheelchair. I bought it a couple years ago, thinking it would enable me to live my life despite having POTS. I wanted to shop and work outside the home. It didn't work out that way, however, because it takes too much energy to push it myself.

I cannot do much in it, and I get really irritated by the stares that I IMAGINE people are giving me. Frankly, it makes me feel nervous, especially when we go out together as a family with my husband's relatives (we are an extended family, his parents and older sister included). My father-in-law is over 70, has suffered a stroke, and survived polio as a child which left him with a short leg. But he walks. I feel so odd being pushed in a wheelchair (I'm 27 years old) by him! Also, I can tell it makes my family members truly sad to see me in it. My daughter thinks it's cool because she likes to be pushed around on my lap (she's 5 years old). But my husband and his family practically cry when we dust it off during flare-ups. I'd just rather stay home than continuously put everybody through that. Also, although I'm not sure whether this is just my imagination or actually in their head, I sometimes suspect that they think I should fight harder, get better or something. Like, I feel pressured to recovery, and almost blamed because I can't.

The wheelchair was part of accepting the permenance of the disease, for me at least. But it turned out that it didn't help in any other way.

[all4family]

Hi masumeh,

I felt so sad reading your post. It is hard enough being sick, but then to have to carry around with you how others are feeling about you being sick. In the beginning of my illness me and my family went through a lot. They as well as me were being told that it was in my head, but as time went on, and they could see that it wasn't. It took time for them to turn around, but they eventually could see that the doctors were wrong about me. It was very hurtful when my family didn't believe me. When I said that sentence exactly to a family member she got very angry, called me names, and said I wasn't grateful for anything. She said she was making the conversation all about her, then when she was done tearing me up she hung up on me. We are no longer talking.

It is sad that your father in-law has been through so much. BUT that doesn't make your pain or sickness any less. We shouldn't have to measure our pain to another. If you close your finger in a door does someone say to you "I can see that hurts, but you shouldn't cry, or get it checked to see if it's broke, because someone else got there finger cut off, and that is worse."? The hard part of what we have is there is no visible seeing it. So others have a hard time believing it can be bad. The saying you have to see to believe I think applies here. It is you have to believe to see.

I see you care about how your family is feeling, and that is very caring of you, but I hope you see how you feel matters too. I felt blamed too. In fact I was blamed for some time. It started with doctors, and they told my family, and myself. I blamed myself, my family blamed me, and my doctors started it all. There was plenty of blame to go around. I missed out on so much, and it was very hurtful. I stayed behind, and beat myself up. I hope you do not do this to yourself.

I wish you had a better experience with your wheelchair. I am happy that I have an electric one, as I can't imagine trying to push myself. I would make it about 5 feet! I have been using mine, and not apololgizing for it anymore, and I can honestly say that there are still those that have there opinions, but it isn't effecting me as much, and like the others have said on here, I LOVE MY CHAIR! The only drawback was I had so much fun, I got burnt in the sun, which made me feel just awful, but the joy of going out with my family was worth it! Take care, and be easy on yourself. You deserve to feel good too.

hugs

Suzy