My Fatigue Is Different

Most people do not understand MS fatigue.

“I think we all have empathy. We may not have enough courage to display it.” ~ Maya Angelou

When I talk to people who don’t have multiple sclerosis, they always try to find some kind of way to relate to me. Which is good. But usually, as the conversation evolves, I can see the confusion on their faces when I try to explain my situation.

Most don’t understand my aches. And probably never will. They don’t identify with the numbing and tingling. And to them, wall walking is some new teenage slang word.

But then I mention I’m always tired and their faces light up. It’s because everyone can relate to tiredness. So they attempt to make a deeper connection through stories of being exhausted from playing with their kids or having to cook dinner after work.

I try to hide my frustration while they provide solutions like a 10-minute nap, energy drinks or just powering through that worn-out feeling.

I point out that MS fatigue is not like that. It’s so different. But, they don’t understand how my “tired” is not the same as their “tired”. It’s because most people have never been incapacitated by extreme fatigue. For the average person, it’s a fleeting moment in the day. But for me, it’s a daylong ordeal. I wake up tired. I function all day tired. And I go to sleep tired.

I even mention the medications I use to give me energy. It’s the only thing that keeps me going. And even though, I’m still weary after taking those meds, it makes the fatigue more bearable. Because when I don’t take anything, I hit rock bottom. And once that happens there’s no coming back. I’m usually done for the day. Those are the times I just sit in it. I sit in the fatigue as it strikes like a plague swarming my entire body. Bashing me like a cannon ball to the stomach. Nearly knocking all the life right out of me.

For some reason, even after I have enlightened them, most people still don’t truly comprehend MS fatigue. But I appreciate those who try to understand. It lets me know that empathy is alive and well.

Like A Child

I hate this MS brain of mine.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” ~ Maya Angelou

As a child, I couldn’t wait to be all grown up. I hated how adults unapologetically and constantly made decisions for me. I wanted to make my own choices. What I failed to realize is that being a decision maker also makes you responsible for the outcomes associated.

I learned that lesson during my teenage years by making bad choices, but as I matured I made better choices and my mistakes decreased. Now when I decide to do something, nine times out of ten, I recognize when it is a bad choice. If I elect to eat three cupcakes instead of one or if I stay up late watching a movie despite having an early morning appointment, I accept my bad choice. I also prepare myself to pay the consequences for that choice.

If only all of my decisions were so trivial everything would be all right! I run into problems when I have to make important decisions. Making the wrong choice in these situations can lead to treacherous outcomes. That scares me.

Since being diagnosed, I have been on various MS medications. Regardless of counsel from my doctors the decisions to switch, start, and stop certain drugs have been ultimately up to me.

Recently I was faced with the decision to begin taking a new treatment and I chose to opt in. I don’t know about you but I am always looking for that miracle cure. I was hoping to see some inkling of improvement but that really has not happened. Every time I get fatigued or when I can barely get out of bed, I question my decision. I know this is not relational thinking but I can’t help it. I am worrying that maybe I made the wrong choice and should have stayed on my previous medication.

I hate this MS brain of mine. It is causing me to second guess my every move. Of late, brain fog seems to be increasingly blurring my cognitive reasoning abilities. Because of my decreased aptitude, when I make life-changing decisions my husband is always with me. We talk and weigh our options but thankfully in the end the final determination is mine. When he disagrees with me I fight him tooth and nail.

One time in order to win my argument I even proclaimed, “It’s my life and this is what I want to do”. He ultimately gave in to that one, but I am not sure how long he will allow it if I continually make bad choices. I don’t know if changing my medication was a bad choice but right now it sure feels that way. That scares me, too.

Making my own choices is my last bit of independence and I’m not ready to relinquish that privilege. When my decisions are overruled I feel belittled and sometimes embarrassed if done in public. My opinion is being reduced to one of an adolescent. I do recognize that I may have to defer more of my decisions to family as my decision-making abilities decrease. I just wish there was a way I could do this without feeling like a child again.
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Original article appeared on -The National MS Society Blog

Savior Of Hope

“There is nothing more we can do for you”.

“Try to be a rainbow in someone’s cloud.” ~ Maya Angelou

During a recent emergency room visit, a battery of test produced no results to why I fainted. The doctors concluded, the event was due to multiple sclerosis and I was released from the hospital.

On the drive home my husband was talking to me but I barely noticed what he was saying. All I could think about was the emergency room doctor’s words, “You are going to be discharged, because there is nothing more we can do for you”.

While my husband navigated through traffic, I sat on the passenger side of the car watching people walk by. I began to tear up. I just kept wishing I had their lives. They looked so happy. Some were laughing and having fun, while others were busy shopping. Not a care in the world. But most importantly, they all looked so healthy.

“There is nothing we can do for you”, is the definition of a chronic debilitating disease. But when I heard it live, out-loud and directed at me, the reality of it crushed my spirit. And the circumstance put me in the mist of one of the saddest moments I have ever experienced.

As we continued home, I hopelessly gazed out the car window at all the happiness around me. It was like being haunted by ghost from my past. Watching a poignant reminder of better times. My veins ran red hot from my fear I would never achieve such joy again. I was trying to smile but something inside kept the pain running through my body, depressing every part of me. Sending hollow thoughts throughout my head. My hopes had been shattered and I felt trapped by my situation.

When we approached a red traffic light, 4 blocks from my home, I made eye contact with a woman. She was sitting in a wheelchair parked on the sidewalk, clutching three grocery bags filled with clothes. The lady was visibly dirty and appeared homeless or at least in dire straits from the way her hair was matted to her head and how she was dressed.

We stared at each other for the entire light cycle. Right before it was time to accelerate through the intersection, she must have noticed the sadness on my face and gave me a big smile and a brief wave.

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That simple act of kindness, felt like a whisper in my ear saying, “Everything is going to be ok.”

In return, just as the light turned green, I quickly smiled back at her. Then we zipped away. Over the next 5 minutes, I continued to think about the woman. I began to feel so ashamed of myself for having a personal pity party.

I can’t believe, despite her own trials, she was still able to recognize my pain and offer me some compassion.

Once we got home, I felt so bad, I told my husband to bring me back to the spot where I had seen the woman. But by the time we returned, she was gone.

I’m not sure what I would have done if she had still been there but something was drawing me back. I think I would have at least said thank you for being so nice or offered her something she may have needed.

Throughout our lives, we give and receive help and never know where it will come from or when it will be needed. I guess this was my turn for someone to help me and I am so glad she did. She renewed my belief in faith, hope and happiness.

A Friend Indeed

MS can’t stop us!

“Alone, all alone
Nobody, but nobody
Can make it out here alone”
– Maya Angelou

Lately, I have been feeling down. Unfortunately this is nothing new. Two to three times a year I go into a “funk”. Not sure what it is but I really hate when it happens.

I mentioned this to my MS support group and after hearing about my troubles, a fellow MS group member, invited me to hangout with her for the weekend.

Sue, who has become a good friend and confidant, recommended we attend the New Orleans Oyster Festival. I agreed and we set a time and chose Sunday as the date.

Once the big day came, I was so excited. As soon as I woke up I began getting ready. As I was putting on my clothes, I could hear the patter of rain on my bedroom window. I looked outside and sure enough it was raining. I felt like crying. Then the phone rang. It was Sue. I just knew she was going to cancel. I answered the phone with a melancholy hello. She ecstatically answered back, “You ready?”

I said, “Sue, it’s raining.”

She replied, “If MS can’t stop us, how we gonna let a little rain stop us? Girl, put on a hat and let’s go!”

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So we met on the Riverwalk in the rain. We were able to find some shelter and settled in to eat our charbroiled oysters and shrimp po’boys. The sun even peaked out and gave us a thirty-minute reprise so we could see the bands play music and watch an oyster-eating contest.

On the way home, I just felt so happy. Yes, my issues were still present but for a little while I was able to escape the worry and tension that always accompany my problems.

It’s funny how friends and family can come through just when you think no one cares. Yes, a friend in need, is a friend indeed.

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