Wheelchairs – MS a Lifetime of Firsts

As a wrap-up to my series on monumental first time experiences, I have chosen my stint as the passenger in a wheelchair. Right off the bat let me add that I have no wheelchair expertise, but I do know I took the tour in a lightweight manual wheelchair that folded. I did not rent the chair, it was provided by the facility we toured.

This first time experience was a monumental moment in my MS life because it was the most uncomfortable I have ever felt in using an assisted device for better mobility. If I thought using a cane and parking in the sections reserved for the handicapped were difficult choices to make, I was about to learn they were nothing compared to my apprehension about using a wheelchair for the first time.

Keeping a Promise

I think I would have backed out of the experience if it were not for the fact that I promised my husband I would begin using whatever aids are available to me, so that my participation in activities requiring stamina and leg strength could increase.

Even with that promise firmly in place, I must confess I was having serious reservations the closer we came to taking the prearranged tour.

I suppose my husband suspected I would want to back out at the last minute because he uncharacteristically did not show much sympathy for me when I expressed my hesitancy. Had he budged even an inch, I would have taken it. So I recommend having a friend or relative who will make you keep your promise, as a good way to take the dive into the rough waters first time experiences so often represent.

Parenthetically, may I also recommend having a MS friend on stand-by that you can call, text, or as in my case, e-mail, who will give you a quick pep talk about the advantages of conquering your dreaded new experience. (Thank you Amy!)

Being Pushed Around for the First Time

What is it like being in a wheelchair for the first time?

My first observation was an obvious one. I was certainly much lower to ground level. I am 5’8, and in a wheelchair . . . I’m NOT.

It was quite an adjustment to make looking at everyone in their stomachs if I did not feel like tilting my head up.

Then came the whole being willing to relinquish control issue that arises when someone is pushing you from behind. It was very strange to be lead around and positioned in ways I would not have chosen for myself.

My husband did very well, given it was his first time being the pusher. But we did clash in a battle of wills a few times until we both got the hang of our respective positions. He was very accommodating, so I think the clashing was more from my end then from his. Not being positioned at the exact location I wanted took a little getting used to. It also alerted me to mental adjustments I would need to make in the future, if I wanted to “enjoy” the experience more.

I had to stop being a front seat driver and his biggest challenge was not spinning me around in such a way that I suffered motion sickness. It was quite humorous at first. He would want to whip me around so as not to miss something, and I had to let him know it was making me sea-sick. Fortunately, we worked it out without me needing a barf bag of any kind.

Comfortableness

Physically and emotionally I had to become comfortable being in the wheelchair for two hours.

By the end of the tour, the seat of the wheelchair began to make me wish I had some sort of pillow with me. It felt good to stand up again and let the blood circulate. I’m sure there are probably many remedies for that problem, as far as finding adequate padding for future trips. BYOP (Bring Your Own Pillow) is tucked away in my memory banks now.

Adjusting to looking up and through objects constantly put a real strain on my neck. I so appreciate the need to speak to people in wheelchairs at their level, as a kindness to them. It is physically uncomfortable and painful to gaze upwards for long periods of time. I can understand the comfort advantage of a power type chair with a headrest attached, for those who use wheelchairs continuously.

Emotionally, I can state without hesitancy that I am NOT looking forward to my next wheelchair outing. While I realize it saves me energy and allows me to last for longer periods of time, it is truly an uncomfortable situation for me. I don’t think I have worked out all the reasons why, thus far and maybe it isn’t supposed to be fun, so I will never enjoy it. At any rate, I find the emotional aspects of the chair the hardest to deal with and look forward to working those problems out as I mentally adjust to the need I have to use a wheelchair.

I do understand that I can’t let my personal preference in this matter win out. Logic dictates that I take the steps necessary to enjoy outings and time with my family and friends. Now that I have found Prozac to be a help with my terrible fatigue, it only follows that I learn to appreciate the freedom using a wheelchair will provide.

I know it will be an uncomfortable adjustment, but it is one I am determined to make, because it is so worth it, considering all the gains I can look forward to in my future.

Wheelchair Choices

When I consider future trips, I find myself wondering if I should go with the ordinary fold-up, manual wheelchair or use something else.  There are so many choices out there.

·        A  lightweight manual wheelchair

·        A power wheel chair

·        An electric wheelchair

·        A scooter

The choices appear to be endless.  I suppose the type of chair depends on the frequency of use and portability. Also comfort comes into play as well.

I always thought I would end up with a scooter, if need be. Now, though, after using the lightweight manual chair, I wonder if that would suffice.

Rent or Own

That’s perhaps my most important decision.  We have been trying to decide which is better for us, to rent as the need arises, or to own and have it at our convenience in case we do a spur of the moment type of getaway. 

Financially speaking, owning a manual wheelchair would be much cheaper than owning a scooter. My insurance provider sure doesn’t seem to be anxious to provide a scooter. One short inquiry leads me to believe more than a little paperwork is involved.

I believe I should begin pricing around and weighing my options more aggressively, so that when we decide to act, we will have a choice firmly in mind.

 

Wheelchair Use– an Inevitable Future

Hate it or love it, wheelchair use and I will cross paths again. 

When it comes to using a wheelchair, I know it will be many things at once:

·        Necessary

·         Uncomfortable

·         Relaxing

·         Embarrassing

·         Empowering

·        Humbling

All these things rolled into one bring out many emotions positive and negative that must be thought out and sorted through.  Having foreknowledge of what I will feel, especially for the opening segment of my ride, will be helpful in overcoming the reservation I will exhibit in the future.

I will remember, hopefully, that it feels uncomfortable at first, but is totally worth it because I am with my husband, or family or friends. My commitment to them will trump my future hesitancy and I will emerge stronger and happier as a result, not to mention emerging a lot less tired!

 

Your Experiences

Hearing from other wheelchair users would prove most encouraging and helpful to me, as well as others going through wheelchair use for the first time. Please feel free to post a comment on whatever aspect you think will be helpful.

My thanks in advance to any willing to do so.

 

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22 comments

Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Great suggestions Norah, I'll be sure to do as you suggest. I will have to find out exactly what hoops I have to jump through with our insurance, I am hoping I will just need to have a script from my doctor saying I need one. Thanks for your help!


Norah Casey profile image

Norah Casey 6 years ago from San Francisco Bay Area

Good luck on your search! I highly recommend getting one that takes your measurements into account. Sometimes they sell ones that are prepackaged for a certain height, but mine broke it down into torso height, seat depth, leg length, and arm length. Our insurance only covered the prepackaged ones, naturally, but I really think it is worth the investment to get one that is specific for your measurements. Thats my two cents anyway! :)


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Good Morning norah! It is encouraging to me that you have a w/c even though you don't use it all the time. I think that will be the case for me as well. We decided better to own one than to rent one. So I will begin looking in to it and hopefully have it BEFORE I actually need it.


Norah Casey profile image

Norah Casey 6 years ago from San Francisco Bay Area

Hi Jen!

I believe I own the very wheelchair in that picture! I went with buying one, primarily because I have a weird body frame. It sits in the closet now, waiting for the next time I have a resurgence of my non-MS mysterious neurological symptoms. It feels a little like I'm living some even more twisted version of the The Tell-Tale Heart, having that reminder just behind a door. It is reassuring to know that if I end up in the humiliating position of being in the chair again, at least I'll be semi-comfortable.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi Cookies! I have the perfect person for you to talk to. Here is the link to her blog and I am sure if you contact her, she will get back to you as soon as possible.

http://mslol.wordpress.com/

As far as the system for foot drop I have only heard very positive reports about its effectiveness. If you would like me to research it and write a hub, just let me know.

Physical therapy can also be a help, although it is hard to say how successful it will ultimately be.

I can feel your discouragement and I know it can easily feel hopeless, but I encourage you not to throw in the towel yet. We all grieve what we have lost, but we can move on from the grief if we are patient and determined to find the answers that work best for our individual circumstances.

Sometimes just talking to someone who understands can releaase some frustration, so please feel free to contact me by e-mail when you feel like talking more. And please contact Amy at the link I have provided, as she shares so much in common with you.


Cookies 6 years ago

I have had MS for 20 years (now 46) and have spent the last 18 VERY healthy. Last two years have been quite progressive, and now I'm continually asking myself: WHEN WILL I KNOW I'M READ TO USE A WHEELCHAIR? I HATE this! Loved to walk my dog, but now can't. Am a part-time teacher, but now spend much of my time on a stool, which is fine (since I teach college). I struggle between knowing when to fight this pain/weakness/fatigue and when to power through (sometimes to a detrimental point when I'm very uncomfortable walking). Can anyone make a suggestion? I'm feeling like I don't know when to say "enough" and just do it.

Also, has anyone had any luck with the "foot drop" electrical stimulation systems and/or physical therapy? I'm ust so discouraged and sad that I can't be as mobile as I was only one year ago. :(


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Thank you fishtiger58, sorry I forgot to tell you I have MS as well. (smile) I will certainly follow your advice and hang in there!


fishtiger58 profile image

fishtiger58 6 years ago from Momence, Illinois

A really great hub. I didn't realize when you read my hub about MS that you have it as well. Hang in there and remember that living is the most important thing, time with your family. A good mental attitude is a must as well. Keep writing you are very good at it.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

OK, I will check it out, thanks!


LizzyBoo profile image

LizzyBoo 6 years ago from Czech Republic

That is why I like hubpages. Every single hubber has its own point to share. There is always something we can take up from any hubs. My sister has a 1 heavy wheelchair for jumping and making noise at home and another one which is more lighter so even her can put it into car. You can read a story about her on my hubpages- Miracles happen. Have a great time and keep hubbing!!!!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

LizzyBoo, so sorry to read of your sister's accident and disability. My brief stint in a wheelchair would never compare to her constant wheelchair use, but if there is any part of what I've written that she finds encouraging, I will be happy. Thanks for your comment.


LizzyBoo profile image

LizzyBoo 6 years ago from Czech Republic

Dear Jen,

Thank you for a lovely hub. My sister is dissabled after a car crash and using a wheelchair so her friends. I always took a wheelchair as a wheelchair, but thanks to your hub I will look more for the quality. I will olso read your hub to her. Thank you very much. You are amazing!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

mulberry1, I'm glad you came across my hub and think it was a good to write about my experiences. I also appreciate you leaving a comment for me, thank you very much.

Marie Leonard, You mentioned the two ways I found most comfortable, although someone with a lot more wheelchair experience might answer differently. However, most uncomfortable was when someone stood next to me causing me to have to look up at them. For personal conversations I liked it better when my husband sat next to me or when he bent over to talk in my ear so that I didn't have to look up at him. If someone had bent down to talk to me, I would have appreciated it greatly.


Marie Leonard 6 years ago

Jen, What is the best way to talk to someone in a wheel chair so that it's more comfortable. Should we stand further away or should we bend down in front of you. I'm not sure which is better. Any recommendations would be appreciated.


mulberry1 profile image

mulberry1 6 years ago

I was just browsing the Hubpages "library" and came across yours. I think it's wonderful that you are documenting your experiences, I'm sure there are many, many individuals that this will help.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

You are correct Paradise7 I am so tired of my house! lol I have put all my friends on alert that they should be seeing me out and about again in the near future. It is fun to have them almost as excited as I am. :-) Thanks so much for your comment!


Paradise7 profile image

Paradise7 6 years ago from Upstate New York

Bless you for your courage, faith and hope. I know you will adjust to the wheelchair and find out later on it can be your best friend. You don't seem the type to want to be housebound! Good luck to you, and hope the Prozac keeps working till they find a CURE!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Your welcome Ethel!

Thank YOU for reading them and feeling that they are enlightening!


ethel smith profile image

ethel smith 6 years ago from Kingston-Upon-Hull

Thanks for sharing these experiences. I know writing these hubs will not be easy but they are so enlightening.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Thanks so much, Poetlorraine. I will certainly look for your next hub, you've got me all curious now! :-)

Connie, all I have to do is write more hubs and it will make you put one out? Then, DONE! lol

Seriously, Prozac is doing quite well. I'm about to increase the dosage hoping for a little more physical energy to match the mental alertness it has given me. If that occurs I imagine I will find it more difficult to write hubs as I will be out and about once again. I'll keep you posted. ;)

Thanks for your advice and compliments.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida

I think I need to switch from Zoloft to Prozac! (Wondering if it works for fatique with fibro...) You are hubbing so much I can barely keep up with you! I am so happy that the Prozac is still working well for you. I got wheeled around the hospital in a chair for tests so I know that the basic ones can be uncomfortable, even for a short period of time.

Of course, with scooters, which I would be prefer if I had to use something, you have to worry about lifts,etc., so there are other things to consider besides the paperwork. Still, I am happy that you are considering getting out more, even though you will have to use the chair. I would suggest renting one until you figure out what type you prefer before making your purchase (in other words, give it a test drive).

Again, another great hub that really addresses issues that many others face who do not have MS, but other conditions. You really are doing some amazing work lately. Keep up the good work! (In fact, Krisvia mentioned that you are putting me to shame asw she has been impressed by your output lately, wanting to know where my hubs are, lol -- I plan to get busy real soon, I promise!)


poetlorraine 6 years ago

beautiful beautiful hub, thanks for sharing. Wheelchairs have improved so much, they are still a necessary evil, you have given me an idea for a hub...... watch closely for it coming up..... love kisses and ooooooodles of affection, you did a wonderful job with this hub. You put into words, what so many would love to but just do not have the ability. so happy you have a loving caring husband, and great talent too ..... god bless

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