A question for chair users:
1) What was your moment when you decided to start using a wheelchair? One of my struggles with MS is that there is no defining moment like when a person has a spinal cord injury. It’s always and endlessly a question: When do I use a cane? A walker? A wheelchair? If I fight harder will I have to? Am I giving up? What’s my defining moment? That I’m asking these questions probably means it’s soon.
2) Are you active in your chair? Sports, getting about, etc. I work out minimum 3-4x/week. Pretty sure that would not be the case if I was walking everywhere.
3) Has it helped your fatigue to use a chair? Enough with thinking about every step I take already! It takes an enormous amount of mental energy to not fall on my ass. One of my draws to using a wheelchair full time is that for the first time since this MesS started, it’s so much easier to navigate my world. I use a chair in general out in the world, but still walk as much as I can in my house and short distances, but I’m starting to wonder if that’s the right thing. Walking makes me cranky because it sucks my energy like a vacuum. But at the same time, am I giving up walking forever if I sit down? Do I have a choice? Which brings me back to my first question:
1) What was your defining moment?
It seems many MSers go through the same dynamics and thought processes.
I thought it was interesting that your My Story talked about 30 lbs "creeping back" onto your body after using a wheelchair/scooter for long distances. (For me, diet is the key to keeping off weight; I eat far, far from a normal American diet.)
In my late 20s I had a week where I couldn't effectively walk and had to consider a wheelchair. I rebelled at the thought, and fortunately my MS improved so it was no longer a consideration.
Now in my 50s I was forced to use one for a spell. Since I have had constipation issues for decades, I quickly drew a correlation between not walking and worse constipation/bowel difficulties -- that scares the hell out of me and is an additional motive to keep ambulatory and walk.
So in many ways I consider it an issue of "giving up." Yes, the pain of walking is real, some days I walk like drunken frankenstein, and the duration is a PITA. But in terms of an overall "pushing the envelope" concept, I want to suck it up and push harder.
My defining moment, as it is, has therefore not come yet. And I'm hoping it never does. :)
a nurse in the er told me, they gave prunes mixed with butter to patients with constipation.
My defining moment, from a fellow wheelchair user, fight it for as long as you reasonably can but when you start thinking more and more you need one you do. I dragged myself around for years with a cane, suffering in pain, falling, leaning on walls, making excuses and struggling every day to carefully plan my walks so I could rest, avoid people and stairs until I got to my destination. One day 8 years ago I just decided I was d-o-n-e with the agony and got a scooter. My life immediately improved and has been better ever since. We all have our limits and anyone who thinks you're "giving up" because you reached yours has ZERO idea of the pain and suffering you're leaving behind by having mercy on yourself and sitting down.
Do you regret it though? I mean going into a wheelchair. I have fought the idea of it for so long. Now I can't get out much because it's affecting my ability to walk more. And I have a power chair but I need to get one of those harbor freight trailers the little ones that I can take my scooter with me.
Thank you. You said exactly what I needed to hear.
I got a dose of “chair shaming” today and it kind of pissed me off. I mentioned to my Chiro I’ve decided to go more full-time to a chair once I get the pieces in place (an accessible van, the correct wheelchair, etc.) and I got hit with “Use it or lose it.” It occurs to me now that able bodies see a wheelchair as a choice. The vain ignorance of that is astounding. As though I’m choosing disability over ability.
There is no choice, not really. I want my smile back. I want to not be exhausted when I reach my destination and once there, be stressed about the next time I have to walk. I want to be able to carry on a conversation with someone I’m “walking” with and not have to freeze them out just so I don’t fall on my ass.
The other assumption that angered me is that sitting down means I’m not active. I exercise all the time, probably more then then he does. I’ll probably even be more active when the logistics of getting there are no longer an issue.
Anyway... I’m venting when mostly I just want to say thank you. I needed to hear what you had to say.
The other assumption that angered me is that sitting down means I’m not active.
To (or "for") me that assumption is accurate. The less I walk the less I'm active. Using a wheelchair exacerbates that inactivity.
And on top of that, my hand placement requires that I visually see my hands. Out of sight means I lose track of where they are. Thus, the arm exercise and aerobics that one gets from operating a manual wheelchair is out (unless I'm turning my head side to side with every hand push) -- I'd have to go electric which means more inactivity. So I'll actively resist a wheelchair as long as possible.
I exercise all the time,
do things "the hard way" on purpose, just for the exercise factor. And since my left leg/arm is impacted by MS more than my right, if I catch myself favoring one side I'll make the other side do extra repetitions just to "punish" it for being gimpy and out of symmetry. To me mind games like that may make you seem odd, but they also help with focus and mental cognition -- even if it means I'm off the charts quirky. :)
Many years ago I was given some very wise advice… That using a mobility aid such as a cane or walker or wheelchair is not giving in to the disease. Rather it is quite the opposite. Being willing to use a mobility Aid is actually fighting against the disease and not allowing it to control you. It is saying that you will keep going and being active, regardless of what you need to use to help you along the way.
That advice greatly helped me when I started needing to use a cane. And I very vividly remember the day when I decided that my cane was not my enemy but actually my friend because it helped me. I stopped being embarrassed by it and began to embrace it, and life became more manageable. Then later when I needed a walker I went through the same process.
About a year and a half ago I got a power scooter that I can use in the house as well as take in the car for outings. It changed my life so much for the better. No longer was I struggling for every tiny little step but I felt free in my house to scoot around and do the things I wanted to do, from cooking to sewing to organizing my office. It also gave me more energy so that I could actually do more exercises and stretches. I also took it on vacation with me to Hawaii and to Mexico and it was so wonderful.
I have just ordered a power wheelchair because my small scooter no longer offers the Comfort and support that I need. I am quite excited about getting it. They are very expensive but we are blessed that my husband's health benefits plan is paying a large portion of the expense.
Do not ever feel embarrassed or ashamed to use a wheelchair. We do not get to make a choice whether we need it or not. We only get to make a choice whether we will be willing to use it to enhance our lives. And being willing to use a chair also enhances the lives of our precious caregivers, because now we can do more things by ourselves and are less dependent on them. Of course there are challenges with getting on and off the chair by ourself, but there are fantastic aids like superpoles with horizontal attached bars that are very helpful for that.
Use whatever you need to make your life better. And don't worry about what other people think. You know yourself what is best for you. Making your life less of a struggle makes it better and that makes you a happier person and that is a good thing.