A brief synopsis of MS in my life...

So I’ve told you a little about how all this started last year, but I thought I’d share a piece I submitted to the National MS Society about a month ago for a contest they were holding. I’m proud to say I was a finalist, but didn’t make the top five. Since I didn’t, I can share this in my blog!

Do you remember being 17 years old, and the plans you had for yourself, everything you would do when you were finally in control of your life? My plan was to marry well and throw parties.

Then I was diagnosed with Muscular Dystrophy. Six months later the diagnosis was reversed. I heard MS the first time when I was 31, when a second neurologist tested me for it, but still didn’t solidify a diagnosis. I’ve spent years denying how I felt and “soldiering on,” wondering why I couldn’t do all the things my friends did in a day, and so did my husband. We eventually divorced.

With no diagnosis, I doubted myself, and denied what my body was saying.  When I was told I indeed had Relapsing Remitting MS at 41, and I felt vindicated and relieved.  I learned the fatigue I have always felt is part of MS.

The fatigue cost me my job, and I applied for disability through Social Security. I was told I’d be denied but then to fight it. The attorney I consulted told me I would lose because I was too young. “Okay,” I thought, “I’ll just ignore myself some more.”

I worked until I could literally work no longer – last year. An MRI confirmed that I have graduated to Secondary Progressive MS with relapses – up to 80% of people with RRMS do. I was measured for a wheelchair, and I got a walker to use around home.

I applied for disability again, and this time I was approved. The government finally acknowledged my reality – now I could, too. But there is no work, my children are grown – how, in this world that promotes the notion that the best people are the “human doings,” do I matter at all?

Well, I am blessed to know I am a child of God.  I know that I am precious in His sight, so the world’s view of me matters less than it once did.  I can truly assess how I’m feeling, physically and mentally, and do what is best for me for that day. My goal every day is to “represent” well.

I have stopped thinking I “must” do anything to earn the “right” to take care of myself. I still sometimes stubbornly do things, and then I pay for it!  The key for me has been to accept myself and strive to stay in my new reality, with grace. Of course there is grief for things I wanted to do and probably never will. The nice thing is that I don’t have to deny how I am. Some days I can do some writing, and some days showering is my big “tah-dah.”  Many days, I feel like all I can say is that I grew my hair and finger nails.

 
I never dreamt I’d be divorced and disabled, living on a quarter of what I once made, but I couldn’t control those things. I do still control my attitude and the light I shine on others, and I’ll do my best at that for the rest of my days.

Oh man - July 17, 2011

Have you ever used TV commercials to identify with your life situation?

I am using commercials to remind myself of my new situation, the way I seem to have done all my life. In the mid 80’s it was the late night Burger King commercial with the “shall we?” look at my husband, followed by the immediate memory that the baby was sleeping – we were new parents and couldn’t flee the house on a whim… I was a little surprised and resentful, followed by guilt, of course.

By the late 80’s it was the tampon commercial where the woman is talking about what she told her daughter, which prodded me to think “I’ll tell my daughter…” followed by the realization that I won’t have a daughter…Oh man, I cried! Then I reminded myself that I had 2 healthy, beautiful little boys and was blessed, and that God knew what I needed. Still, it hurt.

And now, the Buick LaCrosse commercial that generated the thought that maybe I’ll win the lottery and get one, the idea I’ve had for years; followed by remembering that I gave my car away because my legs don’t work anymore. Oh yeah, there aren’t going to be any new cars. If I win the lottery, I’ll hire a car service.

I walk within my apartment – short distances with walls and tables to hold on to. I walk past my wheelchair – the one prescribed by my Neurologist and tailored to my size. It just doesn’t seem very convenient to use, but it has felt good when I’ve used it. But how do I carry things from the kitchen when I’m in the chair? Then there’s the folding table I put up by myself a few weeks – OK, maybe a month ago, that I now have no hope of taking down by myself. It’s removal would make the chair easier to use when I’m not carrying anything. And, I’m moving to a first floor unit to accommodate the illness. How do I feel about that? I don’t know what to think or how I feel. It’s all too much to absorb right now, maybe because my B12 is so low. The doctor told me to take twice the recommended amount!   

I’m reminded again of that little girl with another bout of tonsillitis wondering if it was always going to be like this. My mom would assure that it would pass, and it did, and I was always so relieved. Now, with the legs, I’m again wondering if it will always be this way. Unfortunately, with MS, no one knows for sure. There is no reassurance about what my body is going to do. The blessings are great, though – my family and my God. Someday I’ll make a list of all the “God things” I’ve witnessed since June 21^st.

What am I supposed to be doing or planning with these legs and feet? I realized this week that my feet don’t work right. The feet don’t go off the ground the normal way. Who knew feet lift off the ground even just walking?  Well, now I know they do, or in my case, don’t. That would explain why I trip on throw rugs. I shuffle my feet the way a teenager does when his shoes are too big or aren’t tied – the noise that grates on adult’s nerves. I do that in my bare feet. I never thought about how feet worked, and now I can’t stop thinking about them. It’s my legs and my feet. I’m wanting to learn all about it, from a clinical standpoint - a reason to go back to school - ha ha.