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 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.