MS question

Hi, !

That's a great question. A lot of it depends on the individual and their MS. If you are dealing with an MS flare or an especially agressive form of MS, your day may be dictated by your energy/comfort levels and your mobility. If your MS is being especially cooperative, you may go about your day and not even think about it for hours. It really does depend on the person.

And if you're talking more long term or esoteric here, well, again, it's kind of an individual thing. An MS diagnosis doesn't have to hang over your head like a black rain cloud. It doesn't have to occupy your thoughts ever waking minute. Many people process their diagnosis and how it impacts their lives in ongoing waves, almost like the five stages of grief (denial, anger, bargaining, depression, acceptance). Keep in mind, not everyone experiences all of the stages, nor do they have to experience them in any particular order. You can also cycle through the stages many times over your lifetime.

If you have been forced into early retirement or disability due to MS, it can be ab abrupt change and you may find yourself feeling like you have oodles of time on your hands and you're not quite sure how to spend it.

All this to ask, can you share some specifics in regards to your question? I don't want to keep throwing random answers at you that are not answering your question!

Best, Erin, Team Member.

Hi, ! Somebody sent me a link to this thread to see if I could contribute to the conversation. I've had MS since 1978, when I was 30. I was diagnosed with RRMS in 1981, and I had a fairly moderate case until 1992, when a pretty serious exacerbation landed me in Secondary Progressive MS. The state of MS care being what it was at the time, I didn't go on a disease modifying therapy until 2000, when I started on Copaxone. Like Erin and Doreen, I'm kind of wondering if your family are scared by what's happened to you especially if they don't know too much about Multiple Sclerosis. I agree with Doreen and think you should help them learn more about the disease, and have them join you on a doctor's visit in the near future. One of our mottos in this community is that knowledge is power when you're living with MS! They may start treating you like a adult when they have a better idea of how to help you and how to stray out of your way! Or how to step up and provide the kind of help you may need, but I agree you'll have to speak about what you want and equally important, what you DON"T want or need.


But it's also possible to read your question a different way: here you are with this disease, and what in the heck are you going to do with yourself all day? That answer is different for every single person who lives with the disease. What did you do before you got sick? Did you work for a living? If you're no longer able to do that, you may want to investigate applying for Social Security Disability payments, a process about which this site has many articles and suggestions. You might want to start here: https://multiplesclerosis.net/resources-health. And there is a whole community of people who live with MS associated with this site, and you can read some of their stories here: https://multiplesclerosis.net/stories Or you could just be starting out with this disease and want to hear from other people who live with it. Let me help out with that one. I joined this site in 2019, just as the pandemic was starting, and they asked me to start doing some writing and support work with the community.


So what did I do to fill my day when I was sick with MS? For the first twenty two years I lived with some difficulty balancing, some cognitive difficulties and numbness and tingling and progressive hearing loss, but it honestly didn't interfere too much with my activities of daily living. I worked as a technical writer for a computer company and in my spare time, I participated in community theater, sang with my church choir, traveled to our favorite vacation spot with my husband every summer, and visited family and friends around the country. I even went to graduate school and earned an Master's Degree! As I got older with MS, I make it a point to keep up a good level of daily physical activity between exercise and art lessons and a lot of cooking and cleaning and scooping the cat boxes for three indoor active cats who never tire of stealing socks from the laundry and depositing them in their water dishes.


You fill your day with what you want to do, what you have to do, and what you need some help to continue to do. Maybe your family won't be so anxious in this new way of being if there is something you can give them to do. Have your sister handle the laundry, for example. Let your other family members cook for you once a week or put meals in your freezer. Let your daughter keep up with notifying other folks about how you're doing so they don't bug YOU all the time.


You're not a baby, you're a grown woman with a disease. People love you, they're freaked by this mysterious disease, but the thing is, you can handle this like a boss! Give 'em lots of information, some things to do, and their anxiety will dissipate and everybody will live more calmly! I wish you and your loved ones a good long life and peace in the valley.


Love, Therry, a Team Member