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.
When I think of my aunt I always think of the small suitcase she always travels with to carry all her pills. She seriously has a suitcase there are so many! It’s something that’s always bugged the crap out of my mom and has kept her from taking medication. She isn’t going to be as ridiculous as her sister even when her refusal to take certain medications is even more ridiculous. I can now see that her attitude has influenced my own. I feel like taking anything other than my Copaxone is excessive and would put me on the teetering edge of becoming a hypochondriac. I’ve already succumbed to the daily ritual of Dexilant because without it I can’t eat without the food either feeling like it’s trying to kill me with knives and fire or the food literally deciding to make its way out the way it came in. This has proven to not only be quite embarrassing at times, but totally sucking all the time. Dexilant is a little blue pill that makes me just as happy as that other blue pill makes many middle-aged to you’re-really-not-too-old-to-still-want-to-do-that-so-often? aged men. I’ve even given in to a daily fix of Lexapro because I was sure both my children were going to get MS too, my son wasn’t going to want to go to college and I didn’t feel like leaving my bed was all that important. Soon after, I had to add some Wellbutrin to the cocktail because even though I had anxiety and was clearly depressed, I was having side effects from the Lexapro that were not acceptable My fatigue had gotten worse and I was also hoping the Wellbutrin would help with my lack of energy. So, here I am without my food escaping or trying to kill me and my anxiety and depression have moved on. Still, fatigue is a common problem for people with MS and mine has become incapacitating at times. I also deal with “Restless Body Syndrome”. Restless Leg Syndrome…pshh, that’s nothing! When my body isn’t going all ADHD on me it often feels like there’s a knife at the base of my skull being twisted back and forth or a vice trying to break my head open. I know I sound overly dramatic but I’m writing this while in a lot of pain. I’ve picked the phone up so many times to make an appointment to see my doctor about these problems but the image of my aunt with her pill suitcase and the sound of my mother’s heavy sigh at seeing her makes me hang the phone up every time. I go back and forth between telling myself that I can manage these symptoms with lifestyle changes to screw your mother and your hypochondriac aunt, you can help yourself with as many pills as you’d like. Right now, I take one shot three prescription pills and eight vitamins a day. I’m feeling like that’s too much already but I have MS and MS has its own suitcase full of problems. Isn’t it okay for me to have my own suitcase and not be seen as a hypochondriac? I already feel like my MS and it’s symptoms are misunderstood to the people around me so I try to hide it as much as possible. It’s getting harder to do that and adding more pills to take throughout the day will only be harder to hide as well. It’s too late to call the doctor today and I’d like to say that tomorrow I’ll blow all the crap in my head off and help myself but I’m pretty sure I’ll hang the phone up again. I feel like I should apologize to anyone who reads this. I’m whining and for that I am sorry……again.