It's like a party everyday!

So I think I may have taken the 'put a positive spin on things' thing a little too far. I'm one of those look on the sunny side of life, make lemon-aid, play the Pollyanna glad game people. I like to stay positive and it makes me sad to see people spend too much time languishing in their misfortune. There is a lot of great stuff about being alive, and yes there is bad stuff too, but that's part of the package. Besides, if life were always perfect, would we really appreciate it? Probably not. We might at first, and then we would slowly let that slip away until we took it all for granted. I'm not saying don't acknowledge the dark parts of life: quite the opposite. We should fully look them in the face and name them for exactly what they are. But if we don't move on, then they win. And we lose.

Now I'll hop back down off my shaky wooden soap box and get back to the original topic. It has recently come to my attention that several members of my family and a handful of friends think MS must be like going to Disneyland every day. Yes, this multitude of smarty-pants people in my life are now saying they want to have MS too, based on my glowing reports of life from the myelin side. Even going to Disneyland would be better with MS! The reasoning behind this sudden desire to be just like me has nothing to do with my stunning good looks or my witty and brilliant personality (shocking, I know!). No, it's because I keep telling them about all the positive things and glossing over the negatives.

I may have mentioned that the MS society throws parties and events, and I may have said something about getting financial assistance for family vacations or exercise classes through their wellness grants. I probably brought up all the free pens, notebooks, and tote bags that the various drug companies give out. And based on my love of cheese and cookies, I am positive that I told more than one person about how good the refreshments were at the recent MS 101 event I attended. Of course, when I found out that people with wheelchairs get to cut to the front of the line at Disneyland, I proclaimed the fact to everyone in the room! Who wouldn't?!!

So now that I have spilled the beans about some of the super-nifty-cool things that go along with having MS, I am paying the price. I keep getting pestered with 'how can I get MS?' and 'I wish I had MS!' and 'What is the wing speed velocity of an African swallow?.' It's enough to drive one into a flair-up!

So now that all of you know how many great perks there are to having MS, I beg you to stop pestering me with questions to which I will only make up the answers, and to go do something useful instead. Like sending me cheese and cookies.

I have MS

I have MS. I have fatigue so extreme I cannot wake up some days. Instead I lie in my bed in the middle of the living room and sleep while three children jump on the bed all around me and get into things that they shouldn’t. I have ataxia or loss of muscle control and mobility problems. I fall over for no apparent reason. I am just standing still and then I am not. I am tipping, falling, racing toward the floor before I know what I am doing. I cannot predict it. I cannot stop it. I have tremors. I look like a person with Parkinson’s at times and I am embarrassed. I cannot type this page without constantly erasing the extra letters my betraying fingers keep adding to the page. I have pain and muscle stiffness that won’t let up. No pills or shots or infusions have made it go away. I can’t tell if it will come on me when I wake or when I turn my head or when I sigh. It comes when I least expect it, when I least want it, when I can least cope. I have lost sensation from the chest down. I cannot feel my feet at times. I can’t tell if my husband has his hand on the small of my back or if my children pinch my leg on certain days. I have blurred vision some days. I see clearly and then I blink and I don’t. Everything is a cottony surreal dream world where I can’t read the street signs or see what the faces are trying to tell me. I have bladder problems. I must always know where the bathroom is in case I just can’t wait anymore. I feel that I have to go all the time. I am worse than my children when I need to go, I need to go now. There is no waiting. I have loss of cognitive function. There are days where I cannot remember what name goes to what person, son or daughter. I forget the words door, stove, and, blue, diaper, food, car, and too many others that I can no longer recall at all to remember that I forgot them. The same words or phrases get stuck on a loop grinding through my head like a slightly hysterical broken record. Not smart things, but nonsense things. Things like my 2 year olds word for Popsicle, pocasul, or broken bits of songs or halves of words that make no sense. I have a cane. Actually, I have seven canes, the start of a collection. I have MS and it has hurt me in more ways than I can clearly articulate now, maybe ever.

I have MS. I have the blessing of knowing that I am not crazy. My symptoms are real and have an explanation. I have the blessing of three children who are smart and compassionate and caring. They care for me in their childish ways when I cannot care for them, and it blesses me beyond measure. I have been blessed with a loving, compassionate, gracious husband who can understand me. He has lived a life filled with many of the experiences I am now having, and so he can empathize like no one else. He balances everything so carefully to care for us and it is a blessing to all of us. I have the blessing of a loving family. I have parents who drop everything if I need them to lend a helping hand when I am unable to help myself. I have in-laws that are caring and generous and always lend help when it’s needed. I have relatives on all sides of the family tree that pray and think and ask about me, and they bless me by that. I have friends all around me, at the church, in the neighborhood, around the world. They pull apart my needs and pass them around and bring them back to me cared for. They don’t let me make excuses, and that is such a blessing. I have a house and a car and things galore that I find comfort in and because of that, they are a blessing to me too. I have community. There are people that have joined together around us, physically and emotionally, and they form a network, a community of support and love and blessing. I have faith. I see from past experience that even in dark and seemingly pointless things, there can be blessings. Good can come from bad. Purpose from loss. Meaning from what seems meaningless. I have been blessed to see this in my life repeatedly. And I have faith that I will be blessed to witness it yet again. I have creativity and intelligence. I have ideas and the determination and ability to see them to glorious fruition. I have the support of my friends and family to see things through. I have comfort. I see God in my life, and I feel his arms around me on the days and in the moments when I cannot stand on my own two feet, even with my cane. On the days where I only need Him to hold my hand, I feel Him next to me, encouraging me on.

I have MS. My life sucks. But only if I dwell on the first set of things that I have. Not if I think on the important things that I have.