Good question Eskimos. MS changes everything, but some people with little disability will go on as before, as if nothing has changed, or needs changing. Others will re-evaluate things and make radical changes themselves. Others will have radical changes forced on them. What happens when the disease rapidly disables a person and destroys their ability to earn an income? It's good to stay positive and hope for disease stabilisation in three to five years, but how to adjust in the meantime? How to keep making adjustments if the disease doesn't stabilise in the short term, and we have to deal with increasing levels of disability that can occur so unpredictably?
To complicate things, we live in a society that I think sometimes confuses self worth with net worth, and there can be a tendency to have our identities bound up in what we do. There are so many lifestyle shows celebrating the outer trappings of success, and I think there is a tendency to measure success based on conspicuous consumption. Lots of us seem to divert ourselves by engaging in consumption of various types, whether it be shopping, entertainment or eating out. What happens when we can't afford to enjoy this consumption, because money is suddenly tight, or we can't even go out of our homes without great preparation and logistical difficulty? I don't think society was always this way, but I think things started to change about 40 years ago (in Australia anyway), and this obsession with 'lifestyle' and acquisitiveness has accelerated in the last ten or twenty years.
Despite our best efforts with healthy lifestyle modifications, a diagnosis of MS can ultimately mean that we become profoundly disabled. There just isn't a manual that tells you how to adapt and make the best of it. If there is, I haven't found it, not in the bookstores, or on the web. So I think your question is a very important one, but I suspect the answers will be very individual. At the worst end of profound disability, I think the meaning of life would simply be to get your basic needs met, and to find ways to while away long hours of enforced inactivity. At that end of the disability spectrum, we may not be able to do anything 'useful' for our family or contribute to society directly. We are just consumers of healthcare, but even then (in a welfare state) we are receiving a disability income, purchasing goods and services, and providing employment to support staff. We are still helping the economy tick over if nothing else. But in that position, all illusion of control and 'efforting' to manipulate the environment, and all the worries about your family's needs would probably evaporate I would hope, because there is simply no way a profoundly disabled person should shoulder the mental burden of responsibility for trying to take care of the financial and physical needs of the able bodied. I hope so anyway, because that kind of worry when we can't reasonably affect the outcome is very distressing.
For anyone with MS who is less than profoundly disabled, but no longer very physically active or employed, then I suspect that defining a new meaning of life will depend on what physical abilities are left to them, how long they can engage in any meaningful activity without getting fatigued, what funds are available to them to engage in meaningful activities, what supports and activities are available in their community, and what activities they define as meaningful. For someone who is wrestling with the same questions as you are, I'm beginning to think that the broadest definition of what is meaningful will be the most useful to someone with MS, who is no longer employed productively in the workforce, and that might include finding activities that 'waste time' in a pleasing and enjoyable way, and to do so without guilt!
If you asked a bunch of quite disabled MSers how they pass the time and find meaning in their lives, I suspect you would get very different answers, and that probably wouldn't be helpful for you Eskimos! You have obviously given this a bit of thought - it would be really interesting to hear how you are adjusting, and some of the problems you are encountering as you adapt to changing circumstances, and find new meaning and direction in your life, post MS.
It might help others who are grappling with the same issues.