I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity. – Gilda Radner
Again, my life has decided to accelerate way too fast around a sharp turn and I’m suspended in that turn feeling dizzy from its brutal form. I thought things were going to go differently and that I could finally exhale slowly and effortlessly in this part of my life. I thought this was a part that I could control, even if only part of it. I was wrong and have been utterly surprised by life. I guess, to be fair, it is people or I should say persons that have me shocked and shaking my head. There are people out there who, driven by their want for success and financial aspirations, will lie, cheat and steal to get what they want. I’m bouncing between disbelief and anger and these emotions have me spinning, suspended in a place I don’t like. I know I will land safely and, although I may want to throw up for a while, I will be okay….well at least I better be. I’ve chosen to take what I see as control and try to join a clinical trial. This turn I speak of includes a definite insurance hurdle that I’ve had to jump too many times already and is the most stressful part of my situation. I don’t have the energy to go through it again! If I can get into a trial, I will have my medication and medical care with my neurologist. I am tired of someone behind a desk controlling a big part of my fate with MS. I want to feel like I have some control in this ride and right now I don’t and I’m spinning. I don’t know if this will happen because there is criteria that may exclude me. I also know that my MS can change at any time. Today, I can walk unassisted and see clearly. Tomorrow, both can be gone. So today, at this moment, I am feeling in control and it is liberating. I will hold on to this feeling until it is ripped from my grip. Here’s to today and to now! Oh, and karma…..please let there be karma!
Take your pick but, either way, March is MS Awareness Month. I’m trying to decide the best way to be the squeaky wheel so I can get the grease. Multiple Sclerosis is a disease, like others, that needs things yesterday. Our ninja immune systems gone rogue are causing havoc, sometimes boldly yet mostly in the most sneaky ways. By the time we’ve caught on it’s too late, damage is done. While there are a lot of people working hard to help us with medications and ultimately a cure, it’s so hard to be patient. My heart is full of gratitude but the anxiety often hogs most of it. So, March is MS Awareness Month and I want to make as many people aware as possible. Do I smile and ask nicely? Do I go with the sympathy card? Unfortunately, today I’m feeling like shaking everyone I see and screaming in their faces that I have Multiple Sclerosis and that I desperately need them to be aware and help. I know there are many diseases far worse than MS and as I write this I’m feeling selfish. But, today is March 1st and March is MS Awareness Month so, in spite of feeling selfish, I am going to beg for awareness in any way I can. How are you going to take advantage of this month to bring awareness?
There’s always something we want to do, have, change or be. It may be buying a new car, shedding unwanted pounds, writing a book or becoming a better version of yourself, whatever that might mean to you. I’ve never been a car person but I’ve wanted to lose weight, be a better wife, mother and friend and bringing myself to start this blog was a huge leap of faith for me! There are pressures that have been there for as long as I can remember that served as motivation for me. I want to look good in a bathing suit, I want my family to be nourished in every sense of the word, I want people to like me and want to be my friend and I want to put my thoughts into the universe in hopes that I might reach another soul who not only understands them but who can maybe even be changed by them. I’ve wanted all these things for a long time but now, while still wanting them the same and wanting the same outcomes, I’m motivated to accomplish all of them by something different-fear. I am scared that the day will come that I won’t be able to write, think clearly, cook, clean, do my daughter’s hair, watch lacrosse games, attend music performances, lift weights, run, walk, see. I am scared so I am now laying my foundation. I’m working out regularly, I’m almost always present at all the things my children do, I host parties for my children and their friends as well as mine and my husbands. I don’t want anyone to forget how I am now and how I have been present. I want my friends to still want to be my friend even if I’m not so much fun to hang around. I especially want my husband to feel like he’s had a good wife and my children to feel like they’ve had a good mother. If I push myself and stay committed to all the things I’m still able to do, I will have a better chance of these things. I also take the phrase “If you don’t use it, you’ll lose it.” to heart and task. I need to read, write and learn to exercise my brain just like I need to strengthen my body to give myself a better chance of beating the odds. I am too scared not to.
I look at myself and think about a new character on Seinfeld. I’m constantly seeing everything wrong around me, complaining about it, making fun of it but, unlike the other characters, I’m not funny and no one is laughing. It’s not that there can’t be humor in my situation, I just can’t seem to see it or allow it. Maybe if I have an “Elaine dance” or I enter and leave a room like Kramer- I do have a natural clumsiness about me now. Is it too soon or am I falling into a pit of despair? MS does feel like the “Soup Nazi” always denying me, even when I wait, telling me no. I know that laughter and being able to laugh at yourself are good things, healthy and health stimulating even. I think I’ve done well benefitting from it until MS. MS feels like the “Soup Nazi” and while those of us watching got a good laugh, the character denied most certainly didn’t. All I hear is NO!, NOT FOR YOU! and ,if I’m lucky, BACK OF THE LINE! everyday. I want to find a way to laugh about this. There’s comedy in there somewhere, right? Is anyone laughing?
Pretty much everyday I am fatigued by three in the afternoon. I say fatigued instead of tired or exhausted because “fatigue” is something special for people with MS. Not special in a good way, but special in the way that if you’re not part of our club you can’t really understand it. When I say I’m fatigued I’m saying that my body isn’t functioning correctly. It’s always my arms that bother me the most. They feel kind of like rubber and have almost no strength. I’m lucky if I can fold a load of laundry with them. There’s usually some numbness, zaps and zings but that’s almost unnoticeable next to the rubberiness. My legs get rubbery too and standing too long can be difficult. It’s actually harder than walking because with walking I’ll occasionally get “drop foot” (another club term) but the way my legs feel from standing too long is almost unbearable. Still, the arms are what I’m the most frustrated with. I feel like they’re letting me down the most. It’s all about dinner. I can fold laundry a bit at a time and any time of the day I want. Dinner is always sometime between six and eight at night-well past three in the afternoon. So, we eat out and order in quite a bit at my house. I know this isn’t the healthiest way for me and my family to be eating but it’s still the way things happen. I hate this. I am a stay-at-home mom and part of my job is feeding my family. I’m failing. Tonight, a friend told me that they rarely go out to eat. I know they don’t do this for financial reasons. They do it to be healthy. I hate it all even more which I really didn’t think was possible. So, I’m looking hard at myself and wondering. Am I just Lazy? I’ve searched and found slow cooker recipes online and have bought cookbooks with easy recipes. I use to cook all the time so I have no shortage of recipes when I add my new finds to what I already have. I thought that if I had really simple recipes and slow cooker recipes that could be thrown together early in the day when I wasn’t so rubbery I’d be back to cooking most of the time. It isn’t happening. I use to not feel bad about all of this because I chose to give myself a break. I have MS and if I’m not cooking dinner it’s okay, I’m allowed to not cook dinner. Well, now I’m just feeling lazy. It’s not enough anymore for me to know that the person telling me that they rarely go out to dinner doesn’t have a clue about how MS feels and if they did they wouldn’t be telling me this. My fatigue is the worse part of MS for me right now. I’m still hoping that it will get easier but it’s getting harder to hope for it. So, all I can really hope for is to not be so lazy. I’m putting it out there- this week we will only eat out or order in three times. Even if I’m the only one who reads this, it will still be embarrassing to me if I fail. I’ll have to come back here and write that I wasn’t able to prepare four dinners for my family this week. I feel embarrassed just writing it.