31 Lessons I’ve Learned in 31 Years of Living with MS
I was diagnosed at a time when no approved medications for MS existed and there was no internet to search for information about the disease. I was in my late 20s, dating the man I’d eventually marry and wondering how this new normal would affect my life.
I’ve learned a lot since then, not only about myself and MS, but also about the human condition and how to face both triumph and sorrow. I thought I’d share a portion of what I learned while living with MS for 31 years.
1. Listen to your body. Your body is a brilliant machine that does its best to stay healthy. But when something goes wrong it does its best to let you know.
2. Trust your intuition. If you feel something has gone awry it probably has.
3. Communicate your thoughts and feelings. It’s not always easy, but communication is a healthy option. Don’t keep your thoughts and feelings to yourself. That can lead to physical and emotional harm. Talk things out with others.
4. Educate others. There’s no time like the present to teach people what MS is and isn’t.
5. Doctors. Look for a doctor you feel comfortable with. They won’t always be the one who comes highly recommended. A good doctor should listen to your needs, is aware of recent research, and looks not only at your MS, but at the WHOLE person — physically, emotionally, and spiritually.
6. Family. Having an understanding family makes living with MS easier. Unfortunately, not everyone’s family is compassionate. Use your voice to express your needs. If they don’t understand, then educate them. Give them pamphlets, direct them to websites, have a frank but gentle discussion with them, or schedule time with a family counselor. It’s important to have family members who understand your journey. You deserve that.
7. Friendships. Not everyone will understand your illness. Some can’t handle it. For whatever reason, if friends fade away it may sting for a while, but in the end, you’re better off being surrounded by people who truly care about you.
8. Celebrate good days. When you’re feeling strong take advantage by celebrating life. Enjoy yourself when you’re feeling well.
9. Make yourself as comfortable as possible on bad days. If you have a bad day (or days), do whatever it takes to make yourself comfortable. Be mindful that you have choices, both traditional and holistic, and that only you are the owner of your body. No one can or should tell you what’s right for you.
10. Find beauty. There’s so much beauty in the world. Reach for it to enjoy. Watch the sunset, play with your pet, absorb moving paintings by the masters, read an engrossing book, find solace in poetry, or listen to soothing music. Beauty surrounds us. Turn to it on both good and bad days.
11. Contemplation. Religion is one thing. If you’re a religious person, I’m sure you find great comfort in it. But I am more of a spiritual person. I find great comfort by reading or listening to the words of Pema Chödrön, Jon Kabat-Zinn, the Dalai Lama, Paulo Coelho, don Miguel Ruiz, Thích Nhất Hạnh, and many others.
12. Treat yourself. When I’m having a good day I treat myself. The treats are not anything extravagant. It can be a manicure, walking in a beautiful park, visiting a dear friend, eating a delicious chocolate chip cookie, or taking a gentle yoga class. Treating myself lifts my spirits.
13. Pets. I was in my 40s when I had my first pet. Now I’ll never be without one. We’ve adopted four cats so far and each one has provided unconditional love, standing by my side on my darkest days and brightening my good ones. Animals have a sixth sense about illness. They are always our best friends and constant companions. I feel truly blessed to call myself a pet owner. As they say, who rescued who?
14. Chores. I used to be type A about getting chores done, and they had to be done perfectly. I had a lot of energy in those days. As I aged and my MS fatigue increased, I realized it was impossible to complete my chores the same way. Now, I prioritize what I absolutely must get done, versus what can be put off until tomorrow. I have to save my energy, so prioritizing is a must.
15. Guilt. I used to feel guilty about everything. Not about having MS, but about its consequences. The need to cancel plans, being unable to keep up physically with others or the need to nap. Feeling guilty is a waste of time because you can’t change anything with guilt or worry. Remember this: At one time or another, everyone will have a reason to slow down. It may not happen as early as it has for us, but it will happen. So, stop feeling guilty about what you can’t do. Be proud of who you are. You’re doing the best you can.
16. Comfort: For women, I get it about wearing high heels. They make you feel taller and leaner and they’re more fashionable. But when you have issues with balance, numbness, or weakness, high heels are not for you. It took me a while to give them up. Now I’m an Aerosoles/Naturalizer/Easy Spirit kind of girl. I want the soles of my shoes to be flexible and grippers for the winter so I don’t fall on snow or ice. I’m never going to walk a fashion runway, but the shoes I buy help me feel in control of my walking, and that’s more valuable than crowded shelves of Prada.
17. Research. Read as much credible information about MS as you can. Keep up with the latest research, medications, clinical trials, patient websites, assistive technology, advocacy, or any other focus you are interested in. Sign up for updates and newsletters. Be vigilant about staying aware.
18. Blogs. There are many MS-related blogs that offer news and opinions. If you find one you like subscribe to it. Aside from my own blog, AnEmpoweredSpirit.com, I also enjoy Dan and Jennifer Digmann, a husband and wife both living with MS, My New Normal, Girl with MS, Brass and Ivory, BBHwithMS, Shift.ms, Ashley’s Life with Multiple Sclerosis, and The Lesion Journals.
19. A vision of yourself. See the beauty within yourself. Having a disability doesn’t take that away. You shine from within. Never forget that.
20. Focus. Your main focus should always be to stay as healthy as possible. No matter what else is going on in your life, this must be your priority. Practice yoga, do stretches at home, move around, breathe in fresh air, meditate, try tai chi. If you don’t make yourself a priority, do it now.
21. Relax. Learn to meditate, do breathing work, take a nap, lie on the grass, sit in a hammock, watch a movie, read a book, listen to music, be still. Use this time to clear your mind and become absorbed in the moment.
22. Doctor visits. Schedule regular doctor appointments. Use a calendar for reminders. Knowledge is power when it comes to knowing what is happening to your body. Don’t skip appointments unless you absolutely must.
23. Curiosity. I enjoy learning new things. It stretches the mind and keeps your cognition intact. Learn a new language. Sign up for courses in writing or knitting. Explore different cultures. Read books on history or philosophy. The list is endless and it’s always time well spent.
24. Spirituality. I am a very spiritual person and enjoy reading spiritual books and quotes. I lean on these teachings more often as I age. From Pema Chödrön to the Dalai Lama, what I learn provides me with inner peace. Sometimes when I walk outdoors I listen to them on YouTube. I find it both satisfying and relaxing.
25. Food. I use food as medicine. Over the past year, I’ve received four digestive-related diagnoses. Doctors prescribed medications while my friends advised avoiding gluten, sugar, and dairy. Now I’m on a new food journey that has eliminated my stomach pain. What we choose to eat affects our health.
26. Toxicity. In order to survive and thrive in life, it’s important to remove toxic behavior. Toxic relationships don’t have your best interests at heart. If someone is placing an emotional burden on you, it’s time to let go. It’s not always easy, but it’s worth it.
27. Therapy. There is no shame in seeking professional help. Talk therapy, and if necessary prescription medications, can help ease your inner pain. Look for a qualified therapist whose style and goals are in sync with your own.
28. Joy. No matter what MS throws your way, be sure to let joy into your life. It’s important to find joy and allow it in. Whatever makes you happy and feeling joyful is what’s right for you.
29. Worldview. The universe is big and the problem of one person is a tiny part of it. Remember there are other people in the world struggling with problems. Take time to listen to them with an open heart. Be compassionate about their problems. We don’t have the corner on suffering. Helping someone else is a gift you give to someone else and also to yourself.
30. Sneakers. These are my shoes of choice. Working from home I no longer need to get dressed up. Now it’s New Balance, Skechers, or bust! They give me comfort, flexibility, and I feel more stable and balanced in them. I wear sneakers so frequently I now own three pairs.
31. Honesty. I wasn’t always honest with myself about what I needed. I’d go along with the crowd because I didn’t want to upset others once they learned of my needs, or I pushed myself out of a desire to do everything I always did before my diagnosis. Now, I am honest with myself. Can I keep up? Should I stay out later? Should I schedule two appointments in one day? Being honest with yourself will help you stay healthier and happier. Let the chips fall where they may about others handling your illness. You need to think of yourself first. This may sound selfish, but in the end, it’s healthiest for you.
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