One of Those Days: Multiple Sclerosis Awareness Month

Mar 18, 2015

I woke up this morning, and my legs weren't working right.

For the last two years, ever since I was diagnosed with Multiple Sclerosis, I've had a morning routine that starts with laying in bed and calculating the feeling in each part of my body. Sometimes it stops with, "I slept nine hours and still feel like a zombie. Yup, it's gonna be one of those days." This morning, it stopped at, "Well, my quads feel like I've run a marathon. One of those days."

I never know when it's going to be one of those days. I never know how long those days are going to last. Sometimes those days won't hit until 2 in the afternoon. Sometimes those days only last a few hours. Other times, those days stretch on until I finally concede that it's a full relapse and I need to call the doctor and set up another round of 3-4 day IV steroids.

Those days mean I'm going to be in PJs all day, and so are my kids. It means the dishes and the laundry won't get done, and neither will the writing. Those days mean movies and no makeup and cereal for dinner. My kids actually don't seem to mind-- as long as we have marshmallow cereal in the cupboard.

Those days mean feeling guilty for what I can't get done, and for having to tell my son I can't have a light saber battle right now because remember how mommy has that disease? Those days mean simmering anger that my body is crapping out on me and it's really damn unfair that I'm too tired to even do simple, everyday things. Those days mean there's a heavy, fearful pressure in my chest, because my body really is crapping out on me, and there's no telling if this is the relapse that might leave permanent serious damage. Damage that leaves my fingers numb and forever fumbling on piano keys and my computer keyboard. Damage that leaves my legs shaky all day every day, unable to support my body so that my cane becomes a permanent feature that I have to use all the time.

I hate those days. Really, truly hate them for the reminder they bring. I'm only two years past my diagnosis, and two years still feels really new. I feel like I'm still adjusting--will always be adjusting--to the idea that this disease is part of me. That I can plan all I want for tomorrow, but one or two or twelve of those days might come along and change those plans.

But I'm also two years into a learning process that's teaching me that plans will always change, and adapting to change with grace is part of life. So I plan anyway, because those days? They're not the only ones I have. I'm very lucky, as MS goes. Lucky enough that most days mean I can get up and walk without thinking about how hard it is to walk. I can get dressed, play with my kids, write, and do whatever else I have planned. On those days, I almost forget I have MS.

Today, I'm sitting around and smacking my husband's shoulder when he teasingly calls me "jelly legs." I'm holding onto counter tops and walls and stair railings so I don't fall because my legs feel too weak to hold me up. I'm microwaving quesadillas for my kids' lunch, and they love it. I'll probably take a nap and then go to bed early, and nothing on my list will get done. And I'll hope really hard that tomorrow won't be another one of those days.

If it is, I'll deal with that day as it comes.

*I wrote this post several days ago, but didn't feel up to posting it. Luckily, that day was just ONE of those days, and no others followed. To learn more about multiple sclerosis, or to make a donation toward researching medications and cures, go to the Multiple Sclerosis Association of America.*

15 comments:

Kerry O'Malley Cerra said...

Shallee, I love your honesty and hope you'll give yourself permission to be okay with the "to do" list not getting done on those bad days. As I told you before, my mother-in-law lived with this for over twenty years. It wasn't easy, but she managed. I wish I lived closer to help you out when possible, but know that I'm praying for you. Hugs!

Unknown said...

You're beautiful and inspiring. Thanks for the candid words, Shallee. Here's to a whole lot of good days.

Elizabeth Varadan, Author said...

It really is inspiring how you are dealing with it. A distant cousin of mine and a former student of mine have MS, and they, too, struggle to carry on their daily lives with adjustments. Hoping the good days outweight the bad for a long, long time.

Margo Kelly said...

You are awesome. I hope the best of everything for you. :)

Neurotic Workaholic said...

I especially agree with the part about breaking the rules; I think I read somewhere about how J.K. Rowling technically broke the rules regarding the length of her books, since books in that genre generally aren't supposed to be that long. But it worked for her. I don't know if I could write books as long as hers, though. :)

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Lupitabrasil said...

I am very glad I came across this post and stopped to read it from beginning to end, as it left on a very positive note. I was in the beginning of my own journey with MS and the depression it's was giving me was unbearable , I found some encouragement from several blogs and last year in seeing Rochelle make her personal goals after overcoming the disease with natural medicine I have to tried it also .I’ve kind of resigned to the fact that this is how life will be for me back until I found herbs that stop this multiple sclerosis easily and relief all the Fatigue and other symptoms I was experiencing ,I’m passing this info to anyone at there because ww w .multivitamincare .org has the right cure and caregiver to this disease ….I took various supplements, medicine prescribed by neurologist,massage and physiotherapy still the disease is was progressing very fast until the the MS formula from that caregiver .

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Daniel Lan said...

Been diagnosed with multiple sclerosis in 2015, and I was a woman of 50. They put me on Rebif which I took until 2017 and was switched to Copaxone. I had two relapses on Rebif, none so far on Copaxone. I do notice my balance was getting worse, and my memory, i had no choice to sick for other solution and I was introduce to multivitamincare .org which I purchase the MS herbal formula from the org, the herbal supplement has successfully get rid of my multiple sclerosis and reversed all symptoms after using the herbs as the Dr said , this is almost a miracle and do believe multivitamincare .org herbal cure will be recognize globally because am sure the world are yet to see their wonderful work ,call them (or SMS): +1 (956) 758-7882 to learn more about the new herbal cure for MS.

Celia Olson said...

I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, I started on MS Herbal Treatment from Kycuyu Health Clinic, the herbal treatment immensely helped my Multiple Sclerosis condition, i had huge improvements. Go to kycuyuhealthclinic. com. My life is back. I Adhere anyone reading this to try natural approach.

Donna Morris said...

I was diagnosed with multiple sclerosis 1 month after I turned 47. My grandma is 95 and has had it since she was in her 20s. I have been on Copaxone, the first year was daily and later was on 40 mg 3 times a week which was supposed to help me. It made a tremendous difference for me at first. Although the fatigue is what really gets to me. When I do too much I do start to feel weak, but I had no other choice because my neurologist said this is the only medication for MS. I quit my job because I was a liability, There has been little if any progress in finding a reliable treatment. Around 7 months ago I began to do a lot of research and  was introduced to the Health Herbs Clinic and their effective Multiple Sclerosis treatment.  When I started the MS treatment I felt like a miracle had happened. Feel as good as I can feel. Started driving including on a freeway.  The herbal treatment is a sensation.. “Just google openpaymentsdata and see how much your doctor is getting paid ! AWESOME!!! They make money while we suffer.”  I Just wanted to share for people suffering from this disease to visit healthherbsclinic. com it’s a 10 out of 10 from me! I Adhere anyone reading this to try natural approach.

 
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