The Pendulums of Chronic Illness
The problem with feeling good is that when the inevitable bad days come, it breaks your heart a little. I think I’ve accepted my new circumstances. Then, I feel better. I’ve said before, feeling better is a tease. It is a glimmer of what was. This whisper of hope that maybe, just maybe life can return to a more normal state. And when you have more than one day in a row like that, it only strengthens the delusion.
I spent the two days in a row with an odd sense of restlessness. I felt a little bit better. I wanted to rejoin people and purpose. And then without warning, the next day, my enthusiasm and energy slowed to a crawl. I curled up on the bed at noon time. I slept for an hour and a half. When I awoke I made myself some soup hoping that would restart my inner engine. Instead, I curled up again and slept for another two hours.
Doesn’t this disease understand that I like things to be predictable? I’ll agree to be sick, but I’d like to know when it is going to happen. I just want to be able to plan around it. Is that so much to ask?
Getting sick with a chronic illness is no fun for anyone, but for a “Type A” personality who likes order and structure, it is a special kind of hell. Going with the flow is something I didn’t do well in the best of circumstances. Now I am expected to rock it on a daily basis. A personality type is not something you easily changed mid-life. It’s kind of like asking a aircraft carrier to turn on a dime. It’s just not going to happen.
So, how do you learn to deal with it? I want to say, you tell me. I’ve listened to more self-help and inspirational books and podcasts in the last month than I have in the previous five years. The best I can do is try to face it with at least a modicum of decency. Take a deep breath and do the best I can. Do I really have any other choice?
The one thing I do feel quite certain of is that it is OK to feel this way. I am strong. I will fight. I will make the best of this frustrating and depressing life change. But when I sit down at the end of the day and feel hopeless, it is OK. When the tears roll down my cheeks because I hate this and I’m lonely, it is OK. To expect anything less is to either be incredibly unrealistic or to have never really faced it yourself. The problem is not with allowing yourself to experience the pain of multiple sclerosis (MS) or any other illness. The losses are real. The pain is real. It really does suck.
It is OK to cry, to pout, to whine and even yell a little. What matters is that you don’t stay there.
Everyone has times in life that suck and hurt – arguments with loved ones, jobs that suck the life out of you, unrealized dreams. They all bring us to our knees, and often to tears. They knock the wind out of us and leave us flat on our backs trying to gasp for air and reason. The secret is not that we have succumbed to these circumstances, but that we choose to get up again.
My mom gave me a necklace for Christmas two years ago. It shows its wear from lots of use, but that makes it even more valuable to me. It has a quote from Winston Churchill, “Never, never, never give up.”
It was meant to encourage me with my dreams of creating my children’s museum. Now it holds an even greater meaning. Get up every day to live life. If life knocks you down, that’s OK. Sometimes we need to even stay down a while to catch our breath before crawling to our knees and then our feet again. That is OK. Just don’t stay there.
Get up again, and again and again. It is in the daily battle that life gets its meaning. It is worth the struggle. It is worth fighting for. There is good to be seen and tasted. The pendulum will swing back and forth. Some days the sun will shine. Some days the pendulum knocks you flat on your ass leaving you to question, “WTF?” That’s OK too.
Shake your fist at the sky, curse the ground that caused you to fall. Then get back up.
Hold a baby. Get kissed by a dog, listen to your cat purr. Let the better world hold you in its arms and chose to get up again to greet it. When you choose to hold onto what is good in life, you win and MS (or your battle) loses.
Wishing you victory in your daily struggle.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.
Follow this journey on Hope for Life 180.
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