What A Day Feels Like To Have Multiple Sclerosis and/or Transverse Myelitis
I wrote this and knew I had to share it with the world. It is a wonderful way to explain what it is like living with a chronic illness that can be nearly invisible to others. (And MS and TM is often the poster child for the "You sure don't LOOK sick!" illnesses.) Please read it and pass it along to help others better understand those who suffer silently around them. Read on... Welcome To My World.
After I was diagnosed with Secondary Progressive MS and Transverse Myelitis November 2004 my husband and I were trying to figure out an easy way to tell our children, family and friends what a day with having MS and TM was like since I could no longer do everything I was able to do before I was diagnosed. I was a very active person with being a wife, a mom and also working a fulltime job as well as a fulltime job at home.
People that dont know about MS and TM dont know how it can affect someone and as with anything else it affects everyone differently. Some days you can hardly do anything as easy as walking, opening something, doing dishes, sweeping or vacuuming, being in pain every day or just moving etc and other days people could look at you and say you dont look sick.
One day my husband out of the blue asked me what it felt like to have MS and TM. Hed been there since I was diagnosed and gone to all my Dr appointments with me, seen the pain I was in everyday and seen me in tears because of the pain etc but no one truly knows what someone goes through or feels unless they are in your shoes.
No one truly thinks about or learns about any of the illnesses unless they get it themselves, a family member, friend or loved one gets one. We had heard about MS but didnt know everything about it but the TM we had never heard of before. Of course my husband and kids have seen all the pills I had to take and seen me in pain everyday but he looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. He asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I sat there trying to think of a way to explain this to him so he would understand and so my kids, family and friends would truly understand so I thought of the days I was in so much pain and all the tears I shed from all the pain. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected and give the emotions a sick person goes through with clarity.
I sat there and told my husband to think of all the tears I had shed by being in pain everyday and since finding out I had MS and TM. I told him to take all those tears in his hand per say and now he had MS and TM. He looked at me funny as anyone would so I told him to open his hands and I pretended to put all the tears I had shed since being diagnosed in his hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesnt have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of energy and possibilities to do whatever they want, especially young people.
So for my explanation I had decided to use all the tears that I had shed to convey my point. I wanted something for him to hold in his hand for me to then take away so I broke up some toothpicks to use as tears, since most people who get sick feel a loss of a life they once knew.
I was the one in control of stopping my tears so then he would know what it feels like to have someone or something else, in this case MS and TM, being in control.
I told my husband, imagine that you could only shed 12 tears a day and no more and he asked why so I explained that when you are healthy you expect to have a never-ending supply of "tears" to shed whenever you want but when you have to now plan your day you need to know exactly how many tears you are starting with. It doesnt guarantee that you might not lose some along the way but at least it helps to know where you are starting. So he counted 12 tears but said he wanted more and I told him no. Ive wanted more "tears" for years and havent found a way yet to get more, why should he? I also told him to always be conscious of how many he had and not to drop them because he can never forget he has MS and TM.
I asked him to list off the tasks of his day including the simplest ones. As he rattled off daily chores or just fun things to do I explained how each one would cost him a tear. When he jumped right into getting ready for work as his first task of the morning, I cut him off and took away a tear. I almost jumped down his throat. I said No! You dont just get up. You have to open your eyes and then realize you are late. You didnt sleep the night before, you have to crawl out of bed, and then you have to make your self something to eat before you can do anything else because if you dont you can't take your medicine and if you dont take your medicine you might as well give up all your tears for today and tomorrow also. I quickly took away a tear and he realized he hadnt even gotten dressed yet. Taking a shower cost him a tear and for shaving his face and getting dressed was worth another tear.
I stopped him and broke down every task to show him how every little detail needs to be thought about. You cannot just throw clothes on simply when you are sick, I explained that I have to see what clothes I can physically put on myself and if my hands hurt that day buttons and zippers are out of the question.
I think he was starting to understand when he didnt even get to work and he was left with 6 tears. I then explained to him that he needed to choose the rest of his day wisely since when your tears are gone, they are gone. Sometimes you can borrow against tomorrows "tears" but just think how hard tomorrow will be with less "tears" to shed. I also needed to explain to him that a person who is sick always lives with the thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "tears" because you never know when you truly will need them. I needed to be realistic and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day and he slowly learned that skipping lunch would cost him a tear as well as standing on a bus or even typing at the computer too long. He was forced to make choices and think about things differently. I told him that he had to choose not to mow the lawn so that he could eat dinner that night.
When we got to the end of his pretend day he said he was hungry so I summarized that he had to eat dinner but he only had one tear left and if he cooked he wouldnt have enough energy to clean the dishes. If he went out for dinner he might be too tired to drive home safely then I also explained that I didnt even bother to add that he could barely walk so cooking was probably out of the question anyway so he decided to make a sandwich which was easy. I then said it is only 8pm so you have the rest of the night but maybe end up with one tear so you can do something fun or do chores, but you couldnt do it all.
I hardly see him emotional so when I saw him upset I knew maybe I was getting through to him. I didnt want my husband to be upset but at the same time I was happy to think finally someone understood me a little bit. He had tears in his eyes and he asked How do you do it? I explained that some days are worse then others and some days I have more tears but I can never make it go away and I cant forget about it and I always have to think about it. I handed him a tear I had been holding in reserve and I said I have learned to live life with an extra tear in my eye, in reserve. You need to always be prepared.
The hardest thing I ever had to learn is to slow down and not do everything and I fight this everyday. I hate feeling left out, having to choose to stay home, not to beable to do something with my family or to not get things done that I wanted to. I wanted him to feel that frustration, I wanted him to understand that everything everyone else does comes so easy but for me it is one thousand little jobs in one. I need to think about the weather, my balance and the whole day's plans before I can attack any one given thing. When other people can do simple things, I have to attack it and make a plan. It is in that lifestyle the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom and I miss never having to count my "tears".
After we talked about this for a little while longer and I sensed he was sad but maybe now he finally understood what I had to go through everyday now and how I felt. Maybe he realized that he could never truly and honestly say he understands but at least now he might not complain so much when I can't go out for dinner some nights or when I cant do the laundry or other things around the house and the days I cant drive and he has to take me to an appointment or some place. I have been forced to think about everything I do now.
Do you know how many tears people waste everyday? I dont have room for wasted time or wasted tears and I chose to spend this time with you, the kids, family and friends.
Hopefully people dont take so much for granted or their life in general.
I give a piece of myself in every sense of the word when I do anything so I tell people that they should feel lucky when I spend time with them because that is using one of my tears. Once people understand the tears they seem to understand me better but I also think they live their life a little differently too.
Written By: Crystal Nason
May 31, 2007
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