Today is World MS Day. It doesn’t feel like much to me because it was just MS Awareness Week and MS Month. There has been a lot of awareness and money raised recently and that makes me more than happy. I have a lot of friends who made facebook posts and sent emails about MS symptoms, statistics, needs, hopes and dreams. I’ve decided to take the day to try to plan my year until the next World MS Day. What I see ahead of me is hot weather, graduation, birthdays, even hotter weather, goodbyes, holidays, a much awaited fall/winter, a new year and a beautiful spring. I wish I could include something exciting or even different about my MS but I’m thinking it will stay how it is now- Copaxone, more lipoatrophy, fatigue and cog fog. Oh, and my face will be numb at least a third of the year….seriously. I know this is all really good and I should and will be grateful if this is how it all plays out. I’m just ready for a new therapy. My insurance situation is changing again and this may allow for a change but I don’t want to get my hopes up. So, I will be happy if I get to move away from injections but happy if I don’t because that means my disease is stable. I am going to embrace the heat this summer because near the end of it comes a bittersweet goodbye. I’m looking forward to the holidays and birthdays because they are always fun. I’m actually use to having a numb face so maybe I should start having my eyebrows waxed? That would be a plus of having a numb face. Always try to find a silver lining….
Yesterday was Mother’s Day. I’ve been asking myself what it was like being a mother before I had Multiple Sclerosis. I’ve been a mother for eighteen years and only the last four have been years with MS. I know one day I will have had more Mother’s Days with MS than without so why am I feeling like I need to remember now? Maybe it’s because my oldest is getting ready to go away to college in a few months? Maybe it’s because my youngest seems to be growing up even faster? Maybe it’s because as my children grow, I feel like they don’t need me as much? I obviously remember but I want more clarity. I think my wanting to remember it all so clearly is because I want to feel like I was present enough both physically and mentally in the years before MS to balance out the years after MS and whatever it holds for me in the future. Did I do enough? More than enough? How will my children remember me as their mother? The one thing I’ve always known for sure is that my life’s biggest success will be in motherhood. This is my truth and I cherish it.
I’m sure that most, if not all, mothers with MS have the same worry. How can I control this disease enough to not hurt my children? I know I can’t control their feelings of worry and uncertainty and I know that I can’t control my physical shortcomings. It was hard for me to allow myself to say no to friends and family but it was a whole different kind of hard saying it to my children. It’s always hardest just after Mother’s Day until the long summer finally surrenders to fall. I hate saying no to afternoon errands in the 90+ degree heat but I have to. Falling asleep out of nowhere and waking up after dinner is the most pathetic one. What kind of mother does that?! Oh yeah…..me. Will my children remember this most or the years of dinner always by 6:30 and taking friends with us to parks and museums? The MS years will always be the most recent so that gives them extra weight. I just hope that I did enough before MS to balance it out.
I had my six month visit with my neurologist. We always talk about how I’m feeling, disease progression, insurance, next round of MRIs and what’s new in the world of Multiple Sclerosis. The good news is I’m doing really well. There are no signs that the disease is progressing and, until I have my MRI (which needs to be done by the end of the year), I will go on with this being my truth. My MS is not progressing….until it does. The bad part of the day was when the trial coordinator came in to talk with me about the trial I’ve been crossing everything for. I’m too healthy to be included. It’s strange being told I’m too healthy for anything and ,while I like hearing it, I’m kind of annoyed by it. Actually, I was really annoyed. Can’t a girl with MS get a break just because she has MS?! Actually, she can and I did. The trial coordinator left after she walked me to the checkout counter and told me to wait for her in the waiting room after I was done checking out. After about ten minutes, she came out and handed me a big bag and said a warm goodbye. I took a quick peek into the bag and without squealing, hurried out to my car. I drove home still unable to really look inside the bag. When I got home I opened one of the greatest, most appreciated gifts I’ve been given. Let’s just say I won’t be worrying about treating my MS for quite a while. So, while I often have bad days and just as often have good days, my day ended the way it usually does. I am thankfully blessed with wonderful reminders of how good things really are for me. It’s true that to see the good we’ve had to experience the bad. Multiple Sclerosis has proven to be a lesson of this principle in my life many times. I’ve decided that it will continue to do so because I will keep my eyes, ears and heart open to it.