Jooly's Joint: people with MS supporting each other

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by Marion K. Lashmet

Journaling is a tool that has helped me face the challenges each day. The benefits were immeasurable, especially when asked for documentation. Journaling was extremely helpful to my health--both physical and mental. My own experience is a testimony to that!

A year before I began journaling, my doctor told me I had Multiple Sclerosis. The disease worked slowly--taking away control of my body one step at a time. First, I couldn't walk more than 10 minutes (my left foot would drop loudly on the pavement). Then my eyes blurred on the drive to work. Then I couldn't move my fingers to type. Then I couldn't remember what some words meant and technical meetings became nightmares. I could see mouths and faces move, but I had no idea what they were saying. Grief revisited each time I suffered a loss. Fear, anger, denial, guilt, depression and grief took the place of self-esteem.

Whenever a thought, feeling, or event seemed important, I would reach next to my special chair for my spiral notepad and pen. Usually, I wrote the date and just a few words but sometimes several pages would spill onto the paper. Some days I would skip completely. Whatever I felt like, that's what I did--my goal was total freedom of thought. At first, it seemed I wrote every night--so many thoughts and feelings washed over me. Writing things down seemed to keep the feelings from overwhelming me. Not even my family could understand the deep pain of my losses.

So I wrote, and wrote, and wrote--sometimes at two in the morning, when nothing or no one was around to distract my thoughts. I couldn't sleep--so I wrote. Journaling was an outlet for the feelings that mushroomed inside. The journal was non-judgmental--it was safe. My journal became my best friend. When my hand cramped and I could not write, I used a little tape recorder to say verbally what I couldn't write. Once I started recording my thoughts, I could not, would not, stop.

Then, a magical emotional healing began. In reading my thoughts, I saw how some problems and concerns repeated over and over, like a toddler that falls again and again when trying to walk. I realized I could change some of them by just thinking differently. "She's out to get me" became "she's just doing what she thinks is right." Enemies became just normal imperfect people--like me! Journaling helped me reflect and grow from my experiences.

I even started writing poetry again--something I hadn't done since I was young. I found a creative side of me that helped me regain my self-esteem. Even if I can't write computer programs, I can write something! The poems had a bit of wisdom that helped guide me through the rough times.

I didn't tell my doctor everything. I wondered how much was real and how much just my imagination. "What's the point of telling him if he can't help? Maybe I'm a hypochondriac" I thought. So many symptoms appear as phantoms--now you see it, now you don't. It was like some Gremlin sitting behind my neurologic switchboard, laughing hysterically as he pulls the switch marked left foot, right eye, hands, legs, bladder, memory, sleep, and so on. What I couldn't speak about, I wrote.

When I had no choice but to file for disability, Social Security asked for documentation and details about my symptoms. I simply went to my journal. There I found every symptom I had experienced--even those I'd forgotten. I forgot the two weeks I woke in the middle of the night with foot cramps. I forgot the two weeks I woke every two hours to go to the bathroom. (No wonder I complained of fatigue!) I completed the forms thoroughly. I'm sure this is why SS approved my disability application so quickly. My doctor was very appreciative when I gave him a copy.

Journaling is an important outlet for the emotions that come with a diagnosis like mine. Journaling helps me reflect and grow--years of therapy might do the same but at a higher cost than paper and pen. Journaling is a log of my symptoms, providing complete documentation for my doctor and others. Journaling is a tool that continues to help me cope with the challenges I face.

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