Monday, June 13

Remember I am still me.

My friend Debby Myers is smart, funny, and talented. She's a mom and a grandmother and an important part of Peru, Indiana's Ole Olson Memorial Theatre. Oh, and Alan would want me to mention she's Alan Myers' wife, too. Debby also has Multiple Sclerosis. Her diagnosis is fairly recent, and she's been having quite the dance with her new partner. Whenever anyone sees her, they ask how she's doing. I saw Alan this afternoon and asked him how she was doing. I'm going to say right now: we ask because we care, but Debby knows that. However, she gets weary of answering and when she posted her reply-to-all on Facebook I asked her if I could use it. She said I could, so here it is. I haven't changed a word. Thank you, Debby. God bless. - Liz


Having Multiple Sclerosis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand Multiple Sclerosis and its effects. Of the people who think they know, many are misinformed. In the spirit of informing those who wish to understand... these are the things I would like you to understand.
Please understand that just because I have Multiple Sclerosis doesn't mean I am not still a human being. Some days I spend in extreme exhaustion. At times, sleeping is all that will alleviate my symptoms. I get so tired. These emotions are all very strong and powerful. If you talk to me, and I might not seem like much fun to be with, remember I am still me. I am just stuck inside this body. I still worry about work, home life, my family and friends.
Please understand that Multiple Sclerosis is unpredictable. One day I may be able to do anything, while the next I may have trouble getting out of bed. Please understand that sometimes being able to stand for ten minutes doesn't necessarily mean I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday, doesn't mean I will be able to do the same today. This disease gets more confusing.
Multiple Sclerosis isn't all in my head, and it isn't contagious. Nobody ever died from Multiple Sclerosis though they might have wished they could on really bad days. I can't control how often I feel good or how often I feel terrible. Multiple Sclerosis is a condition with lots of different kinds of symptoms. There is no cure for Multiple Sclerosis, and it won't go away. If I am functioning normally, I am having a good day. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flare ups and suddenly become more sensitive mentally and physically. Other times there may be no warning. I may just suddenly feel awful. I can't warn you when this is going to happen because there isn't any way for me to know. Sometimes this is a real downer, and I'm sorry. If I seem touchy at times, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you understand. I have been and am still going through a lot. Multiple Sclerosis is hard for you to understand unless you have had it. It wreaks havoc on the body and mind. It is exhausting. I ask you to bear with me & I know you cannot understand my situation unless you have been in my shoes.
Please understand the difference between "happy" and "healthy." When you have the flu, you probably feel miserable with it, but I have a condition that doesn't leave. I can't be miserable all the time. In fact, I work hard at not being miserable. Just because I sound good, doesn't mean I feel good. I make myself be happy. That's all. It doesn't mean that I'm not in pain or extremely tired. It doesn't mean I am getting better or any of those things. I am always pushing myself, and sometimes I push myself too hard. When I do this, I normally pay the price. Emotionally and physically I pay a big price for overdoing it, but sometimes I have to. I have no choice. My limitations, like my pain and my other symptoms are invisible, but they are there.
With Multiple Sclerosis, myelin, which is the covering that protects your nerves, deteriorates. Look at it as your nerves being an electrical wire, and wires have protective covering. If the covering is removed, the wire gets a short in it. This is the case with Multiple Sclerosis patients. Your nerves are a wire. The myelin can replace itself, but during the time it has deteriorated and the nerve is exposed, damage is done to the nerves in my body and this damage is not reversible. Thus, causing numbness, pain, tingling and other feelings.
In so many ways I may depend on you...people who are not sick. I may need you to call and check on me. I might need you to help me do things every now and then. You are my link to "normalcy" of life since I will never be normal again until a cure is found.
People with Multiple Sclerosis have different kinds of pains and feelings that are hard to treat. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is jabbing and excruciating. Sometimes it is prickly or numb. At times it feels as though electrical shocks are going through the extremities of my body.
Another symptom I have is problems with memory and concentration. This one is very scary. I may tell you something, and thirty minutes later tell you the same thing.
All these symptoms and the chemicals in my brain can get me down as you would imagine. I get angry, frustrated and I have mood swings.
So since so many have been asking how I am doing, I thought it was time to explain that so far...I am doing the same & trying to keep my expectations high...or low...whichever works. Thank you for your prayers.
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One of Debby's talents is directing. This summer, she's directing Steel Magnolias. I think that's painfully ironic because she's having to prove that's exactly what she is, but it's going to be a great show--if you're anywhere around Peru, Indiana, be sure to come!

8 comments:

  1. Being housebound in a wheelchair, I can relate. I have the problem of my joints being horribly crippled. You have to work through the trials you're given.

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  2. Many years ago I worked with a man who had MS, but I never understood the condition until reading your post. Thank you for your clear and intelligent explanation. I admire your grit and send prayer that your strength-spiritual and physical-is unflagging.

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  3. I appreciate you sharing your life in this way. I completely understand about getting tired of talking about yourself. It doesn't allow you to feel better even though the update is what your friends and families need to hear. I admire your strength and courage.

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  4. Thank you for this courageous post, Debby. You are an inspiration to everyone, whether they are dealing with a disease or not. Bless you.

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  5. I so appreciate this post. My goddaughter's husband - a very young man- was diagnosed with MS several years ago. They have 3 young, active children who adore their father. Some days he is there for everything. Sometimes his wife does double duty for everything, including holding down a full-time job. They keep a positive, prayerful attitude no matter how hard things are. It takes great strength to hurt so much and keep living. I pray a cure is found soon. More people suffer with MS than I ever could have imagined.

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  6. Our thanks to Debby for joining us today and to those of you who commented.

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  7. Debby's post made me look at my own body differently, how I completely take its smooth functioning for granted. Her struggles to participate in life despite everyday pain must be an inspiration to her friends. I really appreciated gaining this insight into MS, especially since I've got a character in the novel I'm about to edit who has relapsing remitting MS. Thanks for sharing.

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    1. Thanks everyone - if u have questions I am always willing to share to assist in the understanding of this complicated invisible disease.

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