However, I did just post this response (below) in a closed group in FB to a fellow MSer regarding the challenge of wanting to be inspiring to others and still being taken down for it in the forums. This MSer is one who runs marathons and who is always actively evangelizing the idea of staying active as much as possible.
And it's great advice, though not always well received.
This happens a lot, actually: people write "positive thinking" comments or posts on their timelines (hmmm, guilty as charged!) and
Here's what I had to say about that, with identifiers removed for privacy. Sometimes I spend my blogging eloquence on posts like this and then I think, dag, I could use that at my blog. So here goes. This is slightly revised because, dagnabit, the editor in me can't help it.
Enjoy your day, however it comes to you!
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Being a cheerleader and encouraging more activity should not be something you apologize for. "Do what you can" is a great approach and you shouldn't be criticized for encouraging that simply because you are more able-bodied.
There are definitely days where I wish my invisible symptoms were more obvious (as in the presence of a wheelchair) just so I could drive home the message that, listen, people, I *do* have limitations and I'm *not* faking it. This is very hard to get across to people who only see a physically functional person and not the terribly fatigued, brain-fogged, migraine-riddled and randomly incontinent person I am. I am a writer and work in medicine, and my intellect constitutes a huge part of my identity; for me, losing bits and pieces of my intellectual abilities can be terribly demoralizing in much the same way losing one's ability to walk can be.
I think many times there are peers among us who are depressed and no amount of positive thinking is going to reach them, bless their hearts. Depression is a recurring theme in my family and I have been there, so I recognize its many faces. These MSers might lash out or express their own kind of judgmentalism by accusing others of "having it easy" or being "holier than thou" or complaining "easy for you to say!". Part of that comes from being visibly afflicted, which in our culture means they are more likely going to be treated differently ("put inside a box" is a great term: the same box with other weak, broken, ineffectual people who have less power in the world). That means their identity has been reduced by others to the visible symptoms of their disease and they cease to be the whole person they are even to their most cherished loved ones. Of course, not everyone is this horribly insensitive to the plight of MSers, but many many are. People can be cruel, though I still insist that this is their own soul's blind spot and not something that we, as MSers, should spend any of our very precious energy trying to fix.
When I am having great days where my energy is 90% or better, my mind is clear, my words come easily, my head is light and unfettered by pounding, nauseating pain, and I am not worried about finding a bathroom in 30 seconds or less (!), I am so very grateful to not be someone that others can "put inside a box."
For my part, I do yoga (which, as [Y] points out, is wonderfully adaptable to all kinds of ability), hiking and fast walking on rural roads with hills and valleys. I have severe issues with my wrists, so many of the poses I do in yoga (down dog, anybody? side plank?) are very hard to do for me because of the pain and numbness and pressure. The strength is there, but the support is lacking. Still, a good yoga teacher can give you options that work so that you can still get the benefits of the pose, as well as the breathing. Yes, there is pain sometimes, and numbness, and fatigue beyond belief even during slow walks. I remember seeing a bench alongside a park trail and really really really wanted to just lay down and take a nap, in the middle of my walk, because my head was so "thick" and my energy was so low. Who does that? LOL And the whole issue of incontinence is always a problem because I like to hike and walk out in nature where there are no bathrooms! Let's just say, I'm a girl scout now and try not to give myself too much grief if the worst happens. Not my fault! It's the damned MS.
So I just take it one effort at a time (not even one day at a time, because the status of my health seems to change hourly!). On a low energy day, I just laugh and say, Oh well, today is not my day to be 100%!, and on a high energy day, I laugh with joy that I can do everything I want to do. Most days I float between these realities and so I just laugh (unless I have a migraine, then I hibernate).
[X], I agree with you that for many of us, the motivation is there, to do what we can as long as we still can. There is no guarantee we will be in this same able-bodied place in the future, and that is perhaps MS's biggest curse of all, this uncertainty we must live with while trying to get on with our lives. And what we are doing when we "do what we can" is making a choice: to maximize our health, to live without regrets, to be an active soldier in the war waging inside each of us, to be a whole person. But it's so very hard to care and to make the effort when our abilities don't match our will ("the spirit is willing but the flesh is weak"), so I imagine any pushback you get from those who think you are being Pollyanna about MS because your gift of athleticism is apparent and you are making the most of it is due mostly to the fatigue that comes with their struggle to do even the most simple tasks. And boy that can be very depressing and can color every action one takes without a strong mind and heart to fight back.
So try not to take it too personally if others aren't as gung ho to your message. We are all bringing different levels of ability and emotional energy to the discussion and sometimes it means others will want to dowse your flame because of it. As Kent M. Keith says in his Paradoxical Commandments, " Do it anyway." For those who are receptive or who need hope, your words are not lost, ever.
[P.S. By the way, I have Keith's PC posted on my wall as a poster... words to live by, no matter how able you are!]
