Multiple Sclerosis and Feeling GOOD
I’m sitting at my computer, imported beer at my side, and I’m thinking back about my day: my family and I took a lunch cruise that started in the Hudson River, swung down around Battery Park, and headed up the East River. There were four enormous waterfalls that an artist created along the shorelines of the East River. One actually stood underneath the Brooklyn Bridge. Fantastic. My cousin booked this excursion, and the majority of folks on the cruise were there for the live gospel performance. So live music, good food, great sights, a boat ride, and family. A unique trip that I ordinarily wouldn’t do. When do I listen to gospel music? Nevertheless, I found myself thinking, “I’m living well with MS.”
When it’s quiet and the dishes are all done, the plump cat is fed, the husband is napping, and I’m left with my thoughts, I realize that I feel…..well…..GOOD. Multiple sclerosis is pretty much a coin with unpredictable odds. Heads: you feel lousy and curse the world. Tails: you actually feel your personal best. Stories of struggling are much more common, since people need to reach out and find others’ support. But how many people announce that they have MS and they presently feel good?
I have two personal friends with multiple sclerosis. One has benign MS, and has very little day-to-day problems. The other one has a more progressive form. I am smack in the middle of both situations. I am moderate, and when I feel awful, I plunge to the depths of MS despair and rottenness. But when it remits, I am back to being a relatively functional person. Most of my symptoms remit, and those that don’t (bladder/bowel stuff, some fatigue, and left leg weakness) usually become manageable. I am currently in a position where I can relax a wee bit about money. My home is now my office. The monkey on my back has gotten off (probably to pester some other defenseless MSer.) When I speak to either of my MS friends, I tell them this and the one with mild MS is overjoyed, and the one with progressive MS is….. also overjoyed. They both want my personal happiness.
If you have MS and you are in remission, you’re having a great day, or you just want to celebrate yourself, then CELEBRATE! Your family and friends want your happiness. That’s why they love you so much. Now go tell everyone how good you feel.
Lanette Says:
Excellent Post! After 8 weeks of this flare-up I’ve put on my boxing gloves and I’m done feeling like crap everyday. A great story to remind us to sit back and enjoy the good times – especially when we feel good. I took advantage of those for a long time…not again.
Great description of your day…it sounds wonderful! Thanks for sharing!
Posted on September 21st, 2008 at 9:50 am
Jen Says:
Hi Lanette–
Believe me, I hear ya. I seem to have a yearly low point (spring into summer) where the MS is attacking and I hate everything and simple stuff becomes a project. So far, I can rebound pretty well. I’m very fortunate and remissions now feel like paradise. Just gotta sound off.
I’m hoping for your speedy return to the good times in the near future. We all root for everyone.
Jen
Posted on September 21st, 2008 at 2:09 pm
Nadja Tizer Says:
Usually I do feel good. I just have to remeber that. I guess these bad last few weeks have been a relapse. I started Prednisone today so I am hopeful that I will be all better soon.
Posted on September 23rd, 2008 at 12:22 am
Jen Says:
I guess I bring this up because of people like you, Nadja. It’s important to stay positive, no matter where you are on the MS journey. I think with MS it’s so easy to panic, get down in the dumps, be angry, etc. I get this way and it’s so hard for me to come out of it. I’m from “the glass is half full” camp, and I have to remind myself of this when I feel absolutely rotten. And I think everyone in the MS “short bus” needs hope.
Posted on September 23rd, 2008 at 5:57 pm
merelyme Says:
Yeah it is like you almost feel guilty for saying you feel pretty good on some days…one is because others are not doing so well who are dealing with disease and two…you feel like people are going to expect you to always be up and running at full speed.
Your post is very insightful.
Posted on September 27th, 2008 at 1:55 am
Jen Says:
Those are exactly my two concerns, Merely Me. I think we’re on the same wavelength about a lot of things!
Posted on September 27th, 2008 at 1:57 pm
Mary Says:
I hope you continue to feel well and feel joy. You are a brave lady! Others with ms can’t help but get positive vibes from your messages. Keep up the good work!
Posted on November 10th, 2008 at 2:16 am
Jen Says:
Mom– is that you? Thanks, either way!
Posted on November 10th, 2008 at 9:46 pm