
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
Hello everyone. I was just wondering if people sometimes feel as though their life revolves around MS. I mean, before I had this disease, I would enjoy spending time with friends and even doing school work. But now, all I want to do is research about different things I can do, different things that people feel with the disease, and I don't want to do the things I used to love doing before. I don't know, I feel like MS has taken the joy out of my life, I had to change all of my goals in life because I do not want the unneeded stress of things being too difficult. I always look at other people and feel that they are lucky for not having anything, and quickly remember the days when I was "normal." I know this sounds bad, but, I guess I just had to vent. How do you get around your MS? I mean, I do listen to music and try to de-stress myself, but, I keep doing the same things that make me stress about this stupid disability. I don't know, I guess because I am only 20 years old, I feel like my life ended, like this is some game that I want to stop playing, but I can't because I am somehow trapped. HELP!!!!
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I've had diabetes (type 1.5) for 11 years and have dealt with all kinds of diabetes-related symptoms, but none of those, not even the most extreme (loss of some vision and resulting surgery) have scared me nearly as much as MS.
From what I've read here it seems like any part of me is up for grabs and might either hurt, twitch, burn, or go numb. It seems like I'm now sandbagged with depression and anxiety - things I felt in the past but never to this extent.
I worry about the difference between symptoms and flare-ups and still don't know that I know the difference. I don't want to complain constantly about sypmtoms, but I also don't want to ignore a flare-up and have something permanent happen.
I used to think that diabetes was the worst thing I could have because it impacted every part of my life, but now I think the MS may worse - partly, I admit, because it is new and I don't know what to expect of it.
Do these feelings of physical pain and anxiety become my new normal? If so, I don't know that I want to live this kind of life. I don't feel normal, or good, or happy, or optimistic at all anymore and I hate living like this.
What do I do if it doesn't get any better than this? If I have a flare-up which can't be treated because I can't take steroids and it leaves me permanently disabled?
I'm really scared.
You mentioned that you lost your career (and I noticed another post about who is still working or not).
May I ask what finally led to you not being able to work?
I love and need my job and this is yet another thing that worries me.
How were you about to stop working and still able to afford to live?
Always wonder what will happen next & when.
And that leaves me always feeling scared.
I think it is important for you to NOT focus on all the possible "bad" outcomes and start focusing on what you love instead. When I first learned about MS, I was terrified, as there were no effective drugs then and the only person with MS I knew was an elderly friend of my grandmother who was in a wheelchair and had no bladder control.
Fortunately (by serendipity?), for some reason I ran into the book "Travels" by Michael Crichton two weeks after receiving my diagnosis. It was odd, because he was never an author I really liked, and I rarely read autobiographies back then. Not to spoil the book for you, but he provided inspiration to me at a critical time by showing that by taking risks and following his passion (ending his high stress career as a physician and choosing to write novels) he ended up virtually MS-free (not to mention rich and famous!).
Please don't discredit the value of using MS as an opportunity to make positive changes to your life. (And I do not mean to imply by this post that those more severely"disabled" MS'ers have in any way failed - just that when you have MS, you can choose to realize just how precious life is, whether you are in a wheelchair or not, and use MS as an opportunity to make the most of your life.)
Should you leave your job? Not if you enjoy it! But if not, I would seriously look at discovering what activities would bring you the most joy. After reading Travels, I quit my high stress job banking job in Manhattan and chose to pursue a career in natural medicine. (By the way, I am now in another "high stress" job as an attorney, but can handle it now!)
One more thing, for the first 7 years or so of having MS, I didn't tell anyone (except on a "need to know" basis - spouse, select bosses, etc.) I truly believe that by not openly identifying with the disease, my health remained much better than it would have otherwise. If you are interested in this topic, I recommend anything by Caroline Myss, who talks extensively about the dangers of "woundology" (identifying ourselves by our wounds instead of our strengths).
Anyway, I'm rambling on now and have to get back to work!
I am very fortunate to have a husband who is able to support me. It was very tight for a while, especially paying insurance out of pocket, but after 4 years of fighting SSDI I finally won my benefits. We also have some investments that make it possible for me to stay home. Like I said...I know how fortunate I am. I had a few years when I didn't know how I was going to make it. Hope that helps.-Jen
Strange but true
I wish you well and big hugs Ellen
Funny you should talk about CFS as I got stuck with that for years. My latest de-stress thing is 'rescue remedy. Sounds goofy but it helps. I was glad my son was 6 or so before my fatigue started. I am 51 now & have learned many strategies along the way. Ask & I'll tell you some.
Lorna
I push everyday and I refuse to change. Don't get me wrong, I have had to make a few adjustments.
I have found that b/c I stay engaged in life, that it has enabled me to survive this disease. Our lives are unique and we must adjust. But when doing this don't forget the most important thing...and that is that you are alive! Take a moment and let that sink in. You are here, you get one life...live it! Live uniquely.
emmie