I’ve been asked on occasion to include more information about my own personal fight with MS. I’m reluctant to do that at times because I want to keep my articles filled with useful insight. I realized through my own research efforts that sometimes hearing a personal struggle can be just as helpful. My path to diagnosis was documented in an earlier post and can be found here: http://livingms.org/2011/10/26/newly-diagnosed/ But what about now? What about since then?
In learning to accept and deal with my diagnosis I began learning everything I could about the disease. I researched the web, talked to doctors, looked up news articles, read books, and talked to others. I began this blog as a way to help everyone become better informed; it gave me a purpose. I also started a twitter feed to relay any current or new science on the subject of MS. In many ways this allowed me to distance myself from my own diagnosis and concentrate on helping the greater cause. As most people can relate; the distance does not last forever and as my symptoms began to invade more and more of my life; my blogging slowed; much like my life, and it was time to start looking inward.
So here I am. Looking inward. Very publicly. I’m going to voice my thoughts and fears and share them in hopes that it helps me, as well as someone else who is struggling with what this all means…sometimes knowing someone else is sharing your fears is enough to help cope with it all.
I think fear of the unknown is the greatest chasm in this mountain climb called MS. I’ve noticed a significant slowing of all that is me. I used to be so active; mountain biking, hiking etc…now a simple walk down the road is sometimes greater than me. Will this be my life now? will I get back to a state of being able to do adventurous things? Every person is different and there is no answer for that. So some days I feel like I am staring into this incredibly deep dark hole that threatens to swallow me up.
I’m grateful that I have the life I have. Am I selfish for wanting more? I am only 41 years old; I still have many things left to accomplish. I begin to think about these things when I settle onto the couch after a long day and my legs hurt to the point of tears. Not being able to stop moving them. They jerk about without any will on my part. Sometimes my nights are filled with these spasms and they keep me awake both in pain and worry for the future. I can no longer wear the beautiful heeled boots I love so much. They sit in my closet; I keep hoping for a day where I will feel balanced and strong enough to wear them but so far that day has slipped further and further.
I try hard not to bother my family or husband with my worries or grief; what can they do? I do not need pity and I do not need advice. They are supportive and offer what they can when I need it; be it words or kind deed but beyond that; this is my fight. I try to keep positive and keep kindness in my heart….but there are days the bitterness creeps in. I can hear it in my words when my frustration peaks or when I am in pain. I keep apologizing for who I am becoming. I do not want to be this way but secretly there are times I resent seeing someone accomplish something I wanted so badly to do. Fatigue has robbed me of who I once was.
No; my tears come late at night when everyone sleeps. Silent tears. Silent prayers. Then in the morning; I try to put on a happy face and pull my tired, aching body into clothes for a full time job I still have to work; yes even here I am reminded of my failings as my cognitive decline has lessened my performance. I’ve struggled; but I hold on with no other options. I get angry as I have to hold the handrail and it takes me ever so long to walk the flight of stairs. I get bitter when I need to use the restroom but wait until the last possible minute because I can’t stand the thought of the pain I will feel in my legs when I do descend the steps. It’s a very old building and there are no elevators. Yes sure; I could work in the conference room on the first floor when there are no meetings; yet another reminder of what I struggle so hard to forget each and every day.
I get tired. I get depressed. I am fighting each and every step of this disease tooth and nail. I won’t give in easily. Yes; I’ve turned the shower water all the way hot until my skin turned beat red in angry defiance…a very silly thing to do as it gives MS the upper hand but anger makes us do silly things sometimes.
There are some good things though. I’ve met some wonderful people I would not have met otherwise who have taught me a lot about life. I’ve also had my German Shepherd Nico by my side for the last year of his life. He is only a year old but learning to become a service dog. Right now; he keeps me active, gives me a purpose and reason to keep going and keep fighting. He makes me laugh when all I want to do is cry. And when I do cry; and he is with me; he invariably always touches me in some small way; or kisses my face and lets me know that he is there for me. He is the one being that I do not have to put on an act for. That I can cry, scream, yell and just sit quietly with and he remains steady; never waivers in his strength or love. Never argues with me; never makes me feel inadequate like this disease does. He just sees me as I always was; a person.
So here I am; 3rd year into my diagnosis, and finally opening up about it. Thanks for listening.