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.
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!