I am part of a Pediatric MS Facebook group, and I have found it to be one of my most trusted comforts in learning to understand what it means to be the mother of a child with Multiple Sclerosis. Below is a posting that has made its way through the MS circles written by an anonymous soul living with this devastating disease. I thought I would share it with you because I know that Sarah feels very much the same way in so many aspects of what this person is trying to share with all of us who do not live with this disease day in and day out. I know that this post is long, I almost didn't read the whole thing when I first saw it, and my life is touched so closely with MS. If you can make it through I think you will have a better understanding of what it must feel like to be living with MS.
“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 about me before you judge me.
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 for fourteen hours 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 don’t attack me when I’m having a bad day by saying, “But you did it before!!” 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 and I am doing my best to cope with this, and I live my life to the best of my ability. I ask you to bear with me and accept me as I am. I know you cannot understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding.
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. Please don’t say, “Oh, you’re sounding good!” or “Oh, you look good!” I am not sounding good, I am sounding happy. Because I feel bad at times, 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.
If you want to suggest a cure to me, please don’t. I appreciate the thought. It’s not because I don’t want to get well. If there were a cure, all people with Multiple Sclerosis would know about it. Telling me I need to exercise more or that I just need to lose weight may frustrate me to tears and it is not correct. I work with a doctor and he tells me what to do for my condition.
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. As much as it’s possible, I need you to understand me.
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. Please don’t say, “You already told me that.” I also might be trying to tell you something and use a wrong word instead of the word I should have used. This is very embarrassing and aggravating, but normal for people with Multiple Sclerosis. It is a very frightening symptom.
All these symptoms and the chemicals in my brain can get me depressed as you would imagine. I get angry, frustrated and I have mood swings. Sometimes it may seem I am being unreasonable, but I can’t admit it. I know this is a very hard thing about being with me. Every time you put up with me when I am in one of my moods, I am secretly grateful. I can’t always admit it at the time, but I am admitting it now.
I know I asked a lot from you, and I do thank you for listening. It really does mean a lot."
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