The Weather Channel just showed a picture of Hurricane Isaac and likened it to an MRI, circling the eye of the storm the way an MS lesion would be circled. So, here I am writing about Hurricane Isaac, Multiple Sclerosis and stress. Isaac has me very stressed. My son just moved to New Orleans Wednesday to start his freshman year of college. At midnight he will be in lock-down in his dorm. From what I am hearing, they will most likely lose power and there will be flooding. I’ve been glued to the TV all day, checking email and facebook for updates from the university and receiving and making necessary phone calls. He is hundreds of miles away. Piling on top of this is the fact that my son is fighting his own immune system and has been dealing with horrible symptoms. He has Rheumatoid Arthritis. The day before he left he struggled to pick up a glass. Stormy weather for him is what stormy weather is for me- horrible. All my symptoms return or worsen. He has debilitating pain and muscle weakness. He takes multiple medications to fight his disease, two of them suppress his immune system. He is sick and coughing and that worries me because it’s easy for his body to develop an infection, especially now that he won’t have access to doctors and medicine. This stress has my body numb and my muscles tight. It also has me thinking about how MS is like a hurricane, even when you know they are coming, they never let you know what they’re going to do once they have fully arrived and they always leave damage behind.
There’s a show on TV called Hoarders and it’s about just that, people who keep so much crap in their house that they literally can’t get into rooms and sometimes even find dead animals buried beneath the plethora of….everything! I’ve been thinking a lot lately about hoarding. What do people keep and refuse to give up and why? While I am not a hoarder of things, I’ve recently realized that I am a hoarder of unnecessary emotions. There are too many things I care about that I really shouldn’t. I know that stress isn’t good for anyone and with MS you physically feel stress and that can actually be quite scary at times. I know this intellectually but the hoarder in me can’t help itself. I carry so many feelings of worry, doubt and frustration that’s doing nothing but making my face numb, my toes burn, my mouth forget how to say words and my legs wobble- equally embarrassing at times as frightening. Some of the emotions I’m hoarding have to do with my MS but most of them have to do with really ridiculous things and people. I really frustrate myself sometimes! So, I need to clean house so to speak and give myself room to feel better, sleep better and smile better. There are things worthy of keeping, some forever and others for only a period of time. There are also things that should never be allowed in your head and heart and some that only need to be there for a while. The first step is always recognizing the problem which I have. Now, I need to devise a plan to throw away a bunch of crap….for good.
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.
The trial coordinator called and talked with me about a Gilenya trial. I excitedly said yes and so she added my name to her list. She told me that she didn’t see any reason I would be excluded. Of course, like always, my brain only faintly heard her words because of all the worrying thoughts that have set up camp in my head like those snot creatures you see in the Mucinex commercials. I know that before you start Gilenya you go through a series of tests to make sure everything is working right in your body, except excessive clumsiness, forgetfulness, numbness and bladder voiding. Well, I should say excessive attempts at bladder voiding because if you’re constantly going you’re not really voiding, you’re just going. Anyway, all of these things are a normal part of MS….yay team! The things they check for before starting Gilenya are heart, eye and lung problems. There may be more but this is all my brain is coming up with right now. I haven’t noticed any eye or breathing issues and my blood pressure is always low so I should be good to go. The trial should start in about six to eight weeks so, until then, I pretty much have everything crossed that can be crossed. I’m thinking positive thoughts and hoping really hard that this will happen, all while trying to kick those annoying snot creatures out of my way!