MS altered my life but it doesn’t define it

I think all of us long for the day when multiple sclerosis no longer exists. When we wake up in the morning to find that not only is there a cure which has eradicated MS from the planet, but one that has reversed the damage already affecting hundreds of thousands of people worldwide.

I woke up this morning and sad to say, today wasn’t that day. So what do I do? Do I get angry because of the struggle? Do I allow depression to overtake me? Do I resent the fact that life is so very different than I ever planned for it to be? Or, do I choose to recognize that life will have problems no matter what I’m facing or where I’m at and that it’s necessary to find some good in the day if I am going to get through it. Can that even be done?

It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.

I can tell you that as a fact because I took a shower this morning but struggled to gather up enough strength just to dry myself off. At least I remembered to rinse all the shampoo out of my hair before getting out. But since I have gotten dressed I’ve been dragging just to get myself going. Why do I do that to myself? I know that showers are one of my enemies that I need to be cautious of because it increases the weakness throughout my body for at least an hour afterwards. Telling me to ignore my weakness or even to pretend it doesn’t exist at a time like that is preposterous. I need a nap not a judgement from a heartless uncaring individual.

The most important thing I could ever tell you in life is that you are much more than your weaknesses and strengths. You are so much more than MS. Don’t let it define you.

1. Try to express gratitude for the simple things: a warm shower, buttered toast and the smell of rain. Practicing gratitude helps focus awareness on what is going well.
2. Recognize anxiety triggers. An upcoming MRI scan or doctor’s appointment, even walking into a medical office may bring up feelings of dread. Sometimes just recognizing anxiety can help dissipate some of the nervous energy.
3. If you don’t quite have your pre-MS stamina, find a new way to experience what you love. Do you enjoy gardening? Try floral arranging. If golfing brings you pleasure, don’t throw in towel if you can’t complete 18 holes; set up a putting green in the living room.
4. Stay engaged in life activities. Don’t delay living life to the fullest and planning for more. Make vacation plans or enroll in a community art class.
5. Get physical. If there is a universal remedy for any type of illness it’s “keep moving.” The body is made for movement; without it, muscles shrink and weakness sets in. Ask your healthcare provider for a referral to physical therapy to jump start your physical improvement program.
6. Connect with others who are thriving in spite of an MS diagnosis. What are their coping strategies? Healthy support groups can be a place of refuge where your feelings can be validated by other people sharing a similar life experience.
7. Have tough conversations. Talking about the future can be hard. Sometimes just getting the conversation going is a tough problem to overcome. But if you’re talking with your close circle of family and friends, that’s a great start.

There are times when we need to put on a brave face even when we don’t feel very brave. To recognize our worth, beyond our accomplishments and bank account balances. To look MS in the face and say “I’m not afraid of you and will not be defeated along my journey into the unknown with a chronic progressive illness.”

It’s important to embrace yourself as you are without the need for constant comparisons. Remember, it’s okay to take your guard down once in a while. Everyone needs a moment to be themselves, away from the judgements of the world and from those that don’t want to navigate around our limitations. A place to be authentic.

Authenticity is about being true to who you are. It’s about embracing your strengths, accepting your weaknesses, and living in alignment with your values. As Oscar Wilde famously said, “Be yourself; everyone else is already taken.” This quote sums up the essence of authenticity. It reminds me that our authenticity truly defines us.

As we navigate through life, let’s strive not only to understand the struggles that we face but also to appreciate the unique individual that we are. I challenge you to shift your thoughts to focus on what you do have rather than what you don’t. I think you’ll be surprised at the strength that rises up in you.