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Friday, October 10, 2014

Predicting the Unpredictable: Life With Multiple Sclerosis

Predicting how I will feel on any given day is like throwing the dice. Who knows?

I spent this entire week feeling so well, happy, energetic, and positive. Physically, I felt very strong. I was writing blogs like a marathon writer, loving every second and creating new ideas. I was published as a guest blogger in my first 2 weeks of blogging by the wonderful people at the Race to Erase MS!

Then, I woke up a few days ago feeling that familiar fatigue. I knew something was up....probably a new relapse approaching. After having MS for years, you start to recognize little indicators that a flare is coming. Fatigue and a lousy attitude are usually my first signs. Disinterest in things I would normally love is second. This time, I have tremendous stiffness, pain, and "pins and needles" tingling in my right hip and leg. My right leg is usually my "old reliable" leg. It has never given me issues, always strong and dependable when my left leg is weak. I am debating whether to call my neurologist and ask for steroids AGAIN.

I find it so interesting how MS flares affect the mood and outlook. How can a physical symptom (numbness, weakness, burning) cause my mood to take such a downward dive?

Here's the thing about MS: The unpredictability is the worst part.

Sometimes, with relapsing-remitting MS, you have periods of relative normalcy. Sometimes you even start to believe that you are 100% healthy again during a long period of remission. But then, you are attacked again when you least expect it. Human beings need an element of predictability in life. Without the ability to predict aspects of our lives, we go a little nuts.

Studies have been done on primates and "learned helplessness."

"Learned helplessness, in psychology, a mental state in which an organism forced to bear aversive stimuli, or stimuli that are painful or otherwise unpleasant, becomes unable or unwilling to avoid subsequent encounters with those stimuli, even if they are “escapable,” presumably because it has learned that it cannot control the situation" (Encyclopedia Britannica, 2014.)

Now, it's not as if we can control our MS flares, but still.....
The idea is: If we learn that we cannot control our lives, we develop an attitude of helplessness. We give up even trying to live or control any aspect of our lives. This is the source of the anxiety and depression that so often accompany this disease.

Fighting that constant, daily knowledge of our utter lack of control over our own bodies is a difficult predicament. The challenge is to practice a daily mantra of "It could always be worse."

I try to challenge myself to look outward when I am overly focused inward on my own troubles. Looking outward, even reading the newspaper or watching CNN for 5 minutes should be enough to snap me out of my dark place. The suffering in this world is extreme, and is my suffering any worse than anyone's? Not really.

Wars, starvation, disease, poverty, oppression. The list goes on and on. If I practice gratitude I can always pull myself up and out of the pity party. People need me! I have 6 children depending on me.

As a mom, you don't get to take sick days.

Mothers work 24 hours a day, 7 days a week, regardless of our physical symptoms; MS or not. Having someone to care for is very helpful for me. Pets, kids, friends....if someone is depending on you, it forces you to look outward.

My suggestions for managing the unpredictable nature of MS:

1. Get to know your body.
Learn to be sensitive to the subtle, early signs of a relapse and slow down. 

2. Avoid stress as much as possible.

 Go get a massage, do yoga, have acupuncture, meditate, breathe, or practice guided relaxation.

3. Educate yourself.
Learn as much as you can about this disease, and you will feel more in control.

4. Find an excellent provider you can call/email at the drop of a hat.
Find someone you feel is responsive and ready to help you when the next relapse strikes. If you have confidence in your provider, you will feel more in control.

5. Have a support system.
Have a network of friends, family, caregivers, and MS resources. Make connections. Online, by phone, or in person. Attend a support group, or an online chat. Keep yourself connected so that you will never feel alone.

Remember, you are strong and capable. Repeat that mantra:


© Meagan Freeman, 2014. Motherhoodandmultiplesclerosis.com

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