provided me with some thought inspiring words the other day. She was blogging about friendships and her counselor, who suggested she ASK her friends what their understanding was of her disease. I must say, until I read that in print, it had never occurred to me to ask anyone what they understood about my Multiple Sclerosis. I have grown an expert at just “assuming”.
We’ve all probably heard the age-old pun of what assuming really does, right? The answer is, it makes an “ass u(of) me”, which is so blatantly true. Assumption is one of the most narcissistic things I practice. When I assume someone can read my mind or my situation, I am assuming many things about them that may not even be remotely true. I am “assuming” I somehow know more or best.
Well, I’ve taken my friend Suzy’s words to heart and I’m going to start ASKING my friends what they understand about my MS and how it affects me. I won’t assume they just “know”. And perhaps in the process of asking them, I will begin to open up dialog and give permission for them to ask ME how I truly am.
One of the things I’ve grown to understand over the course of the past 3 years is this: I don’t always understand my MS, my symptoms, or why I have them one day and not another, so how can I possibly expect someone looking into my world to have mastered these concepts? And many of the comments I have found so offensive in the past have really been said out of fear or wanting to help, not harm. Comments like, “But you look so good”, or “I have a friend who has had MS for years and it really hasn’t been a problem for them”, are just a few of the statements that used to cause me to launch at someone like a wildcat.
Today, I believe these seemingly inflammatory comments are really said because people lack education about Multiple Sclerosis and they are also just as frightened of my disease as I am. I have had to educate myself about MS from square one 3 years ago, so why do I assume everyone else shares the same knowledge I now do? And I am not without fear of my disease, so why should I assume my friends wouldn’t be equally as frightened?
I’ve decided in today’s blog, I am going to tackle a bit of this education and sharing process by providing some basic information specific to me and my MS. My experience isn’t true for anyone else but me, and it is the only experience I have.
MY MS 101
Multiple Sclerosis is believed to be an autoimmune disorder that attacks the central nervous system or brain and spinal cord. It is not contagious, even though to date no one knows what causes it. I don’t have it because I partied too hard in my early adulthood, drank too much, or did anything else YOU also weren’t doing right along beside me! There is no cure for MS, only drugs that may slow its progression. I will always have MS and will die WITH MS, but not necessarily FROM it. My course of disease progression is unknown and unpredictable, but as of this month, it has become more “aggressive”. I have several brain lesions and a spinal lesion in my neck, which cause me a wide variety of symptoms on any given day. Generally speaking, EVERY day I have a degree of fatigue, which has worsened over the past 6 months. I’m not sleepy, my muscles are just tired all the time and sometimes cause me coordination, stamina, and walking problems. If I tell you I am “tired” it means I need to rest, not sleep. If I get too overheated, my symptoms can worsen very quickly, but will usually lessen if I can cool off. My vision in my left eye will blur if I overheat also, so if I ask you to drive, you may want to do so for your own safety! I currently have intense and agitating pain in my left shoulder and arm, which gets more and more intense as the day progresses. I wake up with this pain and I go to bed with this pain. If I seem more irritable than usual, it may be because I am in pain. Some days I feel better than others, but on the days I feel like crap, I may have to cancel plans we had previously made together. Please don’t take this personally. Some days, I barely am aware I have MS or any disability at all. You can remark how “good I look”, but don’t assume my MS is gone. It is not. It becomes invisible sometimes, but it will never go away. And external looks can be horribly misconceiving. I won’t judge your outer cover if you don’t assume to know mine. Sometimes if I walk too far too fast, my left leg gets heavy and numb or I stumble. It’s OK to laugh at me or with me when this happens because I find it funny, too. As a matter of fact, the more you laugh with me, the more comfortable I feel. These things ARE funny to me, but understand they may not be to my other friends with MS…we each have our own tolerance level! Every morning for the past 2 ½ years, I have awakened with a stiffness in my lower calves called “spasticity”. I have to stretch my calves every morning BEFORE I get out of bed or I will possibly fall flat on my face…I’ve done this falling act too many times in the past to NOT remember to stretch! I take 13 pills a day to keep myself healthy and hopefully feeling well. Most of these pills (except for the vitamins) have side effects, which I don’t like, but I take them anyway. I have other symptoms that may or may not be related to my MS like patches of baldness, chronic diarrhea, and sleep apnea, that I also live with on a near daily basis. When I am in a relapse or having new symptoms, my neurologist gives me IV infusions of steroids. These cause me to sleep very little and eat like a ravenous dog. They also cause me to get really crazy and think all kinds of paranoid thoughts. Once I am off the steroids, all those symptoms go away and I return to my baseline “crazy”. Because my MS has become more “aggressive”, my doctor has suggested I take a strong chemotherapy agent to get the inflammation down. I have chosen not to do this because I don’t want to lose my hair, become chronically nauseated, or use up my lifetime limit of the drug just yet. I am awaiting the hopeful return of an IV medication called Tysabri that the FDA yanked off the market last year because it was possibly linked with causing a disease called PML. This disease killed 3 people who were taking IV Tysabri. If it is reapproved in June, I will be taking it because I feel the risk of PML outweighs the benefits. I will then have to have an IV infusion of it every month. I spend a lot of my time trying to suppress my fear about my MS, but I will admit to you now I am very afraid. If I don’t talk to you about my fear, it’s because I can’t or choose not to, but it is OK for you to ask me questions about it or my MS. On my good days, I don’t wake up wondering if this will be the day I go blind, become paralyzed, or lose my ability to control my bladder. On my bad days, I think about those potential problems immediately when I wake up. I am always very thankful to discover these things haven’t happened to me yet. I often don’t tell you how badly I feel or admit I have anything wrong at all because I don’t like to hear people complain everyday how sickly THEY feel and I assume you don’t want to hear this from me either. I don’t want or need your sympathy, but I DO want your continued friendship and support. You are my family and what you think and feel matter deeply to me. I need youto tell me if you see me functioning way off base or behaving in ways that cause you concern. We are, after all friends, and I know our friendship can withstand any rough weather together. I may have Multiple Sclerosis, but no amount of lesions or disability will ever change how important you are to me.