I’ve had a couple of recent emails that cause me to now publicly address some important issues. For privacy reasons, only the writers’ initials have been used. Thank you both for emailing me and posing such valid questions:
Hello Jen:
I just visited your website for the first time. I’ve been fairly recently diagnosed w/ MS and am having a hard time dealing with it, but trying to find others and learn of their coping skills. You’ve had it for 11 years, how have you managed to stay so active? Are there local support groups? I just turned 55 last month (was 54 when diagnosed), I believe it is relapsing – remitting (haven’t been able to get a direct answer from my neurologist), and I am working full-time.
Look forward to hearing from you.
Thank you for your time.
~T
This one’s tough. I cope according to the disease pattern. I also (allegedly) have RRMS, and so I get periods of respite. This is not a given for everyone with multiple sclerosis. My MS has calmed quite a bit in the past three years. I’m currently taking a disease-modifying medication (one of the interferons), and it has been working fantastically for me. I have gone from having yearly severe relapses to recently having a “watered-down” (although still frightening) relapse every two years. In between relapses things level off. I experienced severe pain in the past when my MS worsened a few years ago (as I was beginning the injectables), but for reasons unknown—which is a big factor in MS— I have experienced very little or mild pain since. More problems actually with mild muscle spasms, but these are even fairly tolerable. Many people with MS do not get this respite (from physical and/or emotional pain.) This for me is a privilege and not a given.
As you can see, I’m extremely fortunate and this respite gives me the ability to cope. I didn’t cope well at all when I was experiencing the severe relapses and the severe pain. This is when I began seeking the help of a therapist, and I began taking an antidepressant. Both are continual and my lifeline to the “normal world.” I am also on Social Security Disability Insurance now, so my financial/work problems have also evened out. My husband and I are still living paycheck to paycheck, but we are now not in the hole every single month. Just broke. LOL……All of this contributes to my coping and to my ability to stay active: I am currently doing well and several burdens have been lifted. But this can all change in a heartbeat. So I’m not taking any of this for granted.
For day-to-day coping, you can try contacting your local MS Society chapter (if you live in the U.S.), or your own multiple sclerosis organization in your area of the world. Such in-person support groups exist and these organizations can direct you in your local search. Another great resource for support is your local hospital. My own local system posts support group meetings in their monthly bulletins (and a monthly MS support group is listed.) Call and query about such meetings if you don’t get regular bulletins. An online resource you might want to check out is the Carnival of MS Bloggers, a large consortium of MS patients who come together and share MS experiences/writings. Lots of blog links and stories, as well as objective answers and tips. There is also a chat room that I attend on a regular basis (usually two Friday nights a month) that has been great for really bonding with other MSers. It’s for anyone who would like to connect (not just those from Delaware.) I highly recommend it.
Hope this helps, T, and thank you for reading and posing these questions.
Hi:
i was dx in 2006 and now have progressive relapes- my suggestion is this for you to think about-
I would love it if you had a chat room for people with ms besides one other i know of . One where most people are nice and i have been to one that is nice but wish there were more chatrooms on line for people with ms so that when we hurt day time, night time, evenings we could have someone to talk to that can helps us thru the hard times. the other chatroom we can use caps in there and not yelling for folks like me with bad eyesite. thanks for your time and im glad i found your website
~P
Oh, I’m working on it! I have suggested such an idea recently to the National MS Society. I’m waiting for a response. This website is currently trying to morph itself into a non-profit entity. I’ve been swamped with school work but now I’m free over the summer, so my priority will again be searching for ways to make this website bigger, better, more accommodating, and maybe a source for contributions to the NMSS, a huge contributor to MS research. In the meantime, I believe there are continual chats at this location: www.msworld.org. These are specifically for MSers. If you haven’t yet checked this out, I’d suggest you do. As I also mentioned above, there is a twice-monthly discussion at Joan’s chat room (A Short in the Cord), where MSers gather and kvetch–or just crack each other up—and bond. I love it and have participated now for several months. And we are highly accepting of visual impairments as we all know that it often comes with the MS terrain.
I hope that you try the MS World chats. Let me know how it goes. And I really hope that you’ll join us at Joan’s chat room because we all have bonded so well and everyone looks forward to each session.
Thank you too, P, for reading and for sending in this suggestion.
