- Diseases, Disorders & Conditions
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.
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 Pointers
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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:
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!
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.