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When Will We Ride The Wave Again? 12 Ways to Cope with Lyme

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The ocean can be so calming, the smell, the sounds of the crashing waves, and the feeling of the sand. If you look out to sea, you can envision endless opportunities.

Riding a surfboard in the vast sea can be compared to our everyday battle with chronic Lyme disease and other tick-borne diseases. You can ride a big wave and allow it to bring you to the shore, or that same wave may drag you under the water and carry you out to sea. Some of us are so ill that we need to get out of the water and sit on the hot sand without any sun protection. While we are alone suffering, everyone else is in the water having a blast.  However, we can use this time on the beach, out of the water, to grow and change as we try to heal.

We must always keep hope alive to heal and move forward.

“Have hope. Because it works wonders for those who have it. Be optimistic. Because people who expect things to turn out for the best often set the stage to receive a beautiful result.” – Douglas Pagels

While spending endless days in bed or suffering through the day, we all need positive ways to manage when things are tough. Following are some suggestions for doing this:

Coping with The Difficult Days of Chronic Lyme Disease

1. Music: Music can be soothing, but it can also feed our dark thoughts. Choose songs and pieces that will help your mood and bring some joy. For my son, the guitar was therapeutic and relaxing to play, along with listening to music.

2. Religion: Religion has helped me and kept me from losing hope. We all have our own version of what religion is and how and what we pray to. If I hadn’t known that there was something out there that was bigger than me, I don’t think I could have pulled through this mess as gracefully.

3. Meditation: Meditation is relaxing and puts your mind in another place. You do not need to be an expert at this; there are many ways to meditate. Today, we can go to YouTube or Google and have instructions and examples on how to meditate at our fingertips.

4. Mind-body activities: Yoga, walking, and Pilates are a few of the ways that we can keep our physical body strong enough to keep fighting, without overtaxing ourselves.

5. Support: Friends in our life serve different purposes at different times. Many of us lose our friends throughout this illness, but hopefully, we can gain one or two new acquaintances that understand what we are going through. A Lyme support group or other support groups can serve as great resources for friends and new connections.

6. Social Media: Social media can be both a positive and negative thing. Many of our FB friends are so caught up in demonstrating their lives as perfect on social media that it brings others down. They feel they cannot possibly have the same joy and live the wonderful life that their friends have. Keep in mind that we all have our struggles and everyone has a battle to fight at some point in their lives. Find positive groups dealing with tick-borne disease that offer hope and friendships. Use this as a way to also pay it forward and give hope to others who are suffering.

7. Stories: Books on tape are easy and relaxing to listen to. When my husband was at his worst with illness, it was overwhelming to try to listen to anything, but as time went on, he was able to listen to short stories of others that had suffered with loss and survived.

8. Games: Electronic games were always limited in our home before tick-borne disease took over. We did not own an Xbox and had only a few other electronics. As my son sunk into a depression and was too sick to do anything except lie in bed, the electronic games became an escape for him. It was a way for him to leave the life he was in for a bit and forget about his pain.

9. Animals: Pets can bring so many positive emotions to a home. Our dog was left by his family at the age of nine years old. He is completely trained and is not high energy. He rescued us in so many ways. Max gives us unconditional love, and adds another source of positive energy to the house.

10. TV: There are so many programming options on television today that can also help to dictate your mood. I try to watch positive programs that either give me hope or educate me. My husband and son love to watch soccer for hours as this is a sport they both enjoyed playing when they were well.

11. Art: Painting, drawing, and coloring can also bring peace and relaxation. When my daughter’s hands weren’t hurting, this was a great escape for her. We went to a paint night together and created a beautiful landscape.

A dream board is also a great, creative way to remind us that there can be a future and hope for us. We once spent an afternoon cutting and pasting pictures of what we wanted for our future, and it included a wonderful vacation at the beach.

12. Reminders: Reminders of how far we have come were always very helpful for us. At the end of every year, we would write a list of goals for this coming year and pack them away with our holiday decorations. The following year we would get them out and see the progress that we had made. The goals were always very realistic, such as finding a better treatment plan, setting up guitar lessons, etc.

Ultimately, have hope and keep the faith that you will be back riding that surf board again. You may be unsteady, but you can and will be out there in the vast beautiful sea. After four years of sitting on the beach, suffering, my husband is now getting back into the water, along with my son and daughter. They will fall off the board many times and may even be dragged out to the sea, but they continue walking back into the ocean and into the endless opportunities that await them.

This story was written with our friend Bill in mind, who loves to surf and who saved my family by pointing us in the right direction and allowing us to jump back into the waves and surf again.

This article was first published on ProHealth.com on March 3, 2016 and was updated on November 12, 2020

Tammy Studebaker is a marketing representative for a health and wellness company. She is on the Board of Directors for the Lyme Disease Association of the eastern shore of Maryland and runs a support group in Centreville, MD. Her daughter has multiple food allergies and her son has Celiac disease. Tammy has presented and offered cooking classes at Whole Foods over the past several years and has written blogs for several different publications.  She also presents motivational programs to teens and presents programs to adults on the process of accepting their “new normal” and surviving illnesses. Her entire family, including herself has battled tick-borne disease. She attended RIT (Rochester Institute of Technology), where she pursued her Bachelor’s of Science degree. Tammy has worked in the retail field as a district manager, trainer and recruiter. She helped launch and grow a food allergy non-profit /ELL.

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