Being Active with MS

Wishing I Was Someone Else?

It is funny how I have found myself watching other people and wondering what it would be like to feel “well” again. Of course I am focusing on individuals who are healthy. It amazes me to see what all they can accomplish in a day and not have to spend the next couple of days recuperating. It seems in my mind at least, that these people must be able to wake up every morning feeling refreshed after a wonderful night’s sleep. They get ready for work or for their day without wondering if they will be able to function a little or even at all. They aren’t curled up in pain or begging themselves to just get up because of overwhelming fatigue. These individuals rush on about their day accomplishing many things from work, attending social events, taking care of family, and on top of that are able to finish out their day by completing necessary housework before going to bed. Some hold two jobs or a job and then going to school to further their education.

Once upon a time that was me! To be honest with you though, it is so far back I honestly can’t remember what it felt like to be able to do all that. My dreams at night use to allow me to relive these experiences but now if I am able to dream at all, it is usually about me hurting. Sleep is the one thing I probably miss the most along with waking up feeling good. Now it is all about me bargaining with myself to put one foot in front of the other on most days; but there is an occasional good day. In place of planning for the next several hours, it is about getting through each hour. Of course this includes praising myself when I have accomplished something I thought was beyond my reach for that day. Do you know that saying, “You don’t really recognize how bad you feel until you actually feel good”? That is actually the truest statement ever made. I find that most of my energy is between 9 a.m. until about 1 p.m., which is the time I try to get what I can do done.

This past 9 months has been difficult with my MS. At the present, I’m on the last medication available which happens to be Gilenya. My body allows me to be on a medication for only a period of time before it stops responding. Gilenya seems to be helping the MS, but the side effects for me are horrible. Increased pain and fatigue along with stomach upsets, daily headaches, and tough muscle fatigue seem to be a daily occurrence. I am presently playing with the time of day that I take the pill to see when I can tolerate it better. I am even considering are the side effects worse than the symptoms of MS and should I come off of the medication all together? Due to taking Gilenya, I have had to add other medications to deal with these side effects. Just for clarification, I HATE TAKING MEDICATIONS, period! Now it seems that it is all I seem to be doing. Eating a healthy diet and exercising, walking and in water, are things that are a priority for me if I don’t accomplish anything else in a day. These actions have become necessary to keep myself up and going and to keep my MS somewhat under control. Make no mistake about this statement; when these two things stop, I do get worse.

Living with Multiple Sclerosis takes courage, especially for all who live daily in a relapse. You have no vacation days from this disease. Many days can be difficult, but somehow we all dig deep and find the courage to get through; and often times with a smile on our face. Nobody can truly understand these struggles until they walk in our shoes. I think many healthy people can relate to pain, muscle spasms, or other generic symptoms but even the degree of fatigue is hard to explain; how we can be ok one minute then “NOT” 5 minutes later. Even the fact that some of MS individuals are able to work and carry on somewhat a normal life where others are wheelchair or bed bound and need help to do simple tasks is hard for many to comprehend. We all respond differently to treatments; what works for one may not work for others. Then there are people like me whose body will only respond to medications for a period of time. I know some who just stopped taking medications all together and are managing their disease by other means.

Wherever you are in your disease process, don’t take for granite what you CAN do, and stay as active as possible. Never give up on searching for a different treatment if your current one isn’t working. You NEVER know which medication, treatment, therapy, or even the combination will bring improved function level back to you. Keep as positive frame of mind as possible each day. This is a hard one I know, but sadness, anger, depression are all negative emotions and does make symptoms worse and more difficult to tolerate. For me, I need to stop envying others because this only makes me realize what I CAN’T do… a negative emotion. Make the most of every day, appreciate the accomplishments you can do, and when there is a choice of sitting or walking, choose walking.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.