CHRONIC IS 100% OF THE TIME
Rewritten 2011 by HJSWritergal
When diagnosed with Multiple Sclerosis in 2006, I knew that unlike the flu, this would be an ongoing battle. It scared the heck out of me, but set me on a course of action, to learn to live with it. I did not realize however what the reaction of others in my life would be. People who saw me at first, witnessing my inability to move without a walker or a cane, seeing my fatigue, seemed appalled. The onset and events of MS are termed, Exacerbations. My initial exacerbation was an almost a crippling affair but did improve in time, with treatment and in the first year, 4 hospital stays. Now that I appear and feel somewhat “normal”, can drive anywhere and walk without even the use of a cane, it is deemed that I am, “better”. Since a lot of my MS is not visible to others, their assumption is, I am both normal and better. I may be improved, but I am never going to be without the effects of this disease again. That is now a fact of life and I can live with it just fine. I am on my way, but it is the others in my life that need help adjusting.
MS can be an invisible disability to those who do not have it, particularly if your symptoms do not have you in a wheelchair. No one else knows if I am not sleeping well; if my body is tingling or if I am stiff when I sit for a period of time. People do not get why I am at times suddenly so fatigued I almost fall asleep standing up. With an immune system that barely functions if at all, I keep lots of Lysol and Clorox Wipes at the ready. When faced with a known illness I remove myself or the sick person from my presence, if possible. Yes this is a selfish but self-preservation attitude. There are so many more you come in contact with and have no knowledge of what they may carry. So much is simply airborne and thus unavoidable. It seems that every winter I am faced with cases of bronchitis or sinusitis that enlist the aid of several runs of antibiotics as well as steroids, until finally after at least a couple of months of coughing like a freight train, I get better.
So far I have been lucky and only I myself know that MS gives me good days and some not so good ones. Sometimes I must communicate this to others so they can understand. So many do not apply the term “chronic” nor can they comprehend how it affects my life and interaction with them. I may look like I’m in the pink, but oftentimes, I feel like I’m stuck in a gray area. I do not walk around in a constant state of, “I am sick” either. I seek that even keel which allows those close to me to understand just what I’m capable of on any given day and how susceptible to change this can be. This may necessitate a change of plans at a moment’s notice, but not by choice. It is the nature of the chronic beast that is MS. I still love you as much as I used to, but today is just not a “can do” day for me. Then too maybe a sudden onset of fatigue slows me down to a crawl. Bear with me I am sick but I just don’t advertise the fact that much. I will give you signals only when and if I need to.
Having had the time to wrap my head around it, I understand that I cannot beat MS,that instead I must join it in order to survive and go forward. Hey we all have something to deal with physically and mentally in life, it goes with the territory. Yes chronic is 100% of the time, but as they say I have the disease, it does NOT have me, not yet anyway. I rarely talk about it because I feel strong enough most of the time to say that I am “still kickin.” My mom told me a long time ago to always answer “Great or fine!” when someone asks “How are you?”…and I do. Most have their own life “tsuris” (say surris its Yiddish for trouble) and their inquiry is just polite. Would that those who love and know people with this chronic disease understood this response is really just what we want to feel and what you want to hear, but its not always the truth.
Rewritten 2011 by HJSWritergal
When diagnosed with Multiple Sclerosis in 2006, I knew that unlike the flu, this would be an ongoing battle. It scared the heck out of me, but set me on a course of action, to learn to live with it. I did not realize however what the reaction of others in my life would be. People who saw me at first, witnessing my inability to move without a walker or a cane, seeing my fatigue, seemed appalled. The onset and events of MS are termed, Exacerbations. My initial exacerbation was an almost a crippling affair but did improve in time, with treatment and in the first year, 4 hospital stays. Now that I appear and feel somewhat “normal”, can drive anywhere and walk without even the use of a cane, it is deemed that I am, “better”. Since a lot of my MS is not visible to others, their assumption is, I am both normal and better. I may be improved, but I am never going to be without the effects of this disease again. That is now a fact of life and I can live with it just fine. I am on my way, but it is the others in my life that need help adjusting.
MS can be an invisible disability to those who do not have it, particularly if your symptoms do not have you in a wheelchair. No one else knows if I am not sleeping well; if my body is tingling or if I am stiff when I sit for a period of time. People do not get why I am at times suddenly so fatigued I almost fall asleep standing up. With an immune system that barely functions if at all, I keep lots of Lysol and Clorox Wipes at the ready. When faced with a known illness I remove myself or the sick person from my presence, if possible. Yes this is a selfish but self-preservation attitude. There are so many more you come in contact with and have no knowledge of what they may carry. So much is simply airborne and thus unavoidable. It seems that every winter I am faced with cases of bronchitis or sinusitis that enlist the aid of several runs of antibiotics as well as steroids, until finally after at least a couple of months of coughing like a freight train, I get better.
So far I have been lucky and only I myself know that MS gives me good days and some not so good ones. Sometimes I must communicate this to others so they can understand. So many do not apply the term “chronic” nor can they comprehend how it affects my life and interaction with them. I may look like I’m in the pink, but oftentimes, I feel like I’m stuck in a gray area. I do not walk around in a constant state of, “I am sick” either. I seek that even keel which allows those close to me to understand just what I’m capable of on any given day and how susceptible to change this can be. This may necessitate a change of plans at a moment’s notice, but not by choice. It is the nature of the chronic beast that is MS. I still love you as much as I used to, but today is just not a “can do” day for me. Then too maybe a sudden onset of fatigue slows me down to a crawl. Bear with me I am sick but I just don’t advertise the fact that much. I will give you signals only when and if I need to.
Having had the time to wrap my head around it, I understand that I cannot beat MS,that instead I must join it in order to survive and go forward. Hey we all have something to deal with physically and mentally in life, it goes with the territory. Yes chronic is 100% of the time, but as they say I have the disease, it does NOT have me, not yet anyway. I rarely talk about it because I feel strong enough most of the time to say that I am “still kickin.” My mom told me a long time ago to always answer “Great or fine!” when someone asks “How are you?”…and I do. Most have their own life “tsuris” (say surris its Yiddish for trouble) and their inquiry is just polite. Would that those who love and know people with this chronic disease understood this response is really just what we want to feel and what you want to hear, but its not always the truth.
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