My First Year with MS
I don't know about you but this past year has been a humdinger for me. Lots of changes. How can one possibly prepare for developing a disease like Multiple Sclerosis? Basically you can't. You have to learn on the job in a manner of speaking. I want to now share with you what this first year has been like as well as what I have learned about myself and this mysterious disease.
During this year I did develop some new symptoms I had not experienced previously. One symptom in particular, was very trying for me. I was experiencing what felt like surges in my head which would travel to the limbs on the right side of my body making my whole ride side shudder and convulse. These episodes would last a good twenty minutes or longer. A friend of mine who has three children having various forms of epilepsy, looked at what I was doing, and thought it looked a whole lot like a clonic seizure. This type of seizure is where you are lucid and awake and the seizure is localized to one part of the body. I did have an EEG and I will write a separate post about what happened during my test as well as results.
During the course of this first year I have experienced: Depression, fatigue, spasms and tremors, stiffness, tingling and numbness, constipation, slurring of speech, foot drop, problems with balance, visual disturbances including seeing flashes of light in my periphery and zig-zaggy multi-colored auras, weakness, mental confusion, forgetfulness, and difficulty with processing information.
I think I have covered them all!
During this year I have developed a much greater understanding of how my body works.
For example I began to study the mechanics of walking. Who thinks about how to walk? Now that I have Multiple Sclerosis, I do! Whenever I feel my coordination of gait is off I try to experiment a little. I do experience the symptom of foot drop which means that for me, my right foot wants to drag behind me when I take a step. The toes are not in the right position for taking that next step forward. Although I can't walk very well during these times, I found that I could jog. It was such a strange phenomenon for me. I asked my neurologist about this and she told me that the neurology of walking is different for jogging and running. So whenever I have foot drop I try to jog a bit and then slow things down to where I am walking. Sometimes my walking clicks in then and my mind remembers how to walk. I can literally feel my normal walk return upon a single step.
I also found that although I would feel off balance while walking, I could still ride a bike. Getting off and on the bike is a different matter however. I do have to be careful there. For whatever symptom I am experiencing I try to see whether it carries over into all situations. I like to find out what my true limitations are instead of assuming I can't do anything at all.
During this first year I have discovered the value of a nap when I can get one. When I am feeling weary and run down my MS symptoms seem to creep out of the woodwork. Being tired also exacerbates any mood issues I am currently dealing with as well. After a 15-20 minute nap I do so much better both physically and mentally.
Speaking of mood, I have experienced some of the greatest mood swings this past year. I have always suffered from depression as well as mood swings but the stress of this diagnosis has definitely taken a toll upon my emotional well being. I had to learn to grieve all over again. My learning curve is quicker this time around. I had experienced similar feelings when my youngest son was diagnosed with autism. You feel emotionally numb for awhile, you get pissed, you fret and worry, you cry, and then ultimately you pick yourself up and begin the journey towards acceptance. And sometimes all these feelings can occur within a day! I am not sure where I am in this grieving process. I can tell you this, the process is not always linear. You have some symptoms and you get mad all over again. The next day you feel fine and you think to yourself, "This isn't so bad." But that evening you lie awake in your bed fearful of what tomorrow will bring.
My moods have become as unpredictable as this disease.
This first year with Multiple Sclerosis has taught me about how fragile our existence truly is. I have felt some of my most vulnerable moments in observing the changes in my body. I have come to understand how truly temporary our bodies can be. We simply aren't made to last. It is a sad thought to contemplate but in a way it is almost re-assuring. My disease has led me to think about the big picture. I don't have it all figured out but then again nobody does. I am more comfortable with my powerlessness.
Multiple Sclerosis has made me more aware of my limitations and frailties as well as the fact that I don't have control over everything in my life. On the other hand, I have honed in on what things do matter to me. One thing which matters most to me is that I try to make a difference. That is why I am here writing about all this.
I have also learned in this past year that I am not an emotionally detached writer. I cannot write about this disease even in the most technical way without feeling something. I cannot read your stories and experiences without feeling that little punch to the gut. I had no idea it would be so hard to write about this part of my life. Maybe it is because I am going through it so intensely right now. I try to visualize that one reader who may just need my words on that particular day. I don't know who you are but I am writing for you.
The first year of having any disease is often the most dramatic. It is hard for me to deal with the fact that this is just the first year of many I will have this illness. My buddy, Multiple Sclerosis, will be around for a long time. In the meantime I learn. I learn how to read my body, how to adapt, and how to cope. Ultimately I will learn to accept. I am definitely not there yet.
So tell me where you are in all of this. What was your first year like with this disease? What have you learned in the process? What advice do you have for those who are newly diagnosed and who wonder what life has now in store? Share your thoughts here. You just may help someone along the way.
Published On: November 26, 2008