Tuesday, October 13, 2009

It's just one of those days!

Depression, frustration, and anger. These are some of the things the doctors warn you about when you have MS. They warn you about a lot of things in hopes of preparing you for what life has in store. But there really is no way to prepare for any of it, and this is the case with life in general not just with MS or any other disease.

Fatigue, optic neuritis, balance issues, pain, insomnia, numbness, depression, hypersensitivity, bowel and bladder dysfunctions, sexual dysfunctions… These are all common symptoms with Multiple Sclerosis. You can read about these symptoms, you can research treatments, but you cannot prepare for any of it, until you experience it. And most of the time the doctors don’t tell you what to expect because there is no sense in getting you worried over something that may or may not happen. And I have not read anything in a book, or online that has prepared me for any of this.

One of my biggest challenges with this disease is the frustration I feel when I am no longer able to do the things I enjoy. In the beginning of summer, we were hitting the beach almost every day. We were at the park, we went hiking, we played and we laughed and although I had this disease life was good. By July I couldn’t step outside without the heat causing my legs to crawl, and causing my eyes to act up. I couldn’t pick my daughter up from the bus stop when school first started without taking my air conditioned car. We live 3 houses away. I knew if I attempted to walk down and stand there for the 10 minutes or so that we wait for the bus I would not be able to walk back home. And although you learn to adapt to these changes in your body and in your life you cannot help feeling frustrated.

I have a very aggressive form of this disease, and the only way to treat an aggressive form is with aggressive therapies. So I pump these toxins into my body each week. I take pills for the MS symptoms, I take pills to counteract the symptoms of the medications. I inject myself every week with a drug that tries to shut down my immune system. I get sick, and I stay sick because my body cannot fight these attacks. And your entire life becomes one big science experiment. This drug makes it worse, this drug is effective for most people but not you. Let’s try this one. Let’s try that one. It’s all one big guessing game. What works for some doesn’t work for others.

There is such a thing as “MS Fatigue”. We have our own class of fatigue, and until you have experienced it, you have no idea. I can tell you there are weeks at a time where I am completely useless. It takes every ounce of energy I have to get dinner cooked. I can’t get off the sofa, and when I do it’s because I am going to get into my bed. But even sleep is terrifying, and painful. Am I going to be able to see when I wake up? Am I going to be able to walk? Is the crawling bugs feeling on my leg going to let up so I can fall asleep? I look around my house at the laundry piling up and the floor needing to be cleaned and I cannot find the energy to get off of the sofa and take care of these things. Mommy doesn’t want to play today sweetie she is so tired. And you lay here and watch life as it passes you by and this is the fatigue they talk about.

People can see that you are having a hard time walking. And even if they can see the physical impact and they can understand the cause of these symptoms. But no one can see the emotional impact that this disease has on you. No one can feel what is going on in your mind when you realize you cannot walk across the room. No one feels your heart sink when you look at your shoe collection and you remember the days when you could actually wear them. No one can see the disappointment in yourself when your body refuses to respond to the drugs. Or the absolute feeling of hopelessness you feel when you look into your child’s eyes and you don’t know that you are going to be here to watch her grow up. You can no longer run around the yard with her, and you don’t know if you will even be able to walk with her tomorrow.

You see people who take life for granted and it makes you angry. You used to be one of those people. You worked too much, you didn’t take time for yourself, or time for your family. And now you can’t get that time back. And it makes you angry.

Every day isn’t a bad day. And you do learn to appreciate life a lot more when you have something threatening to take it away. Every day is a battle in the much bigger war called life. And every day that I wake up I awaken with the knowledge that I am alive and this disease didn’t win, and this war is not over.

But, some days, like today you just don’t want to fight anymore. Some days you just want one day where you are not reminded that this thing is here and it’s kicking your ass and there is absolutely nothing you can do to stop it. These are the days when you have to fight harder. These are days when you have to use that anger and that frustration to push you through to tomorrow. And you cannot worry about what tomorrow has in store because even if you do there is no way to be prepared. Life happens, and there is nothing you can do to stop it.