Well, it is officially July 1st – MG awareness month has quickly come to an end yet again. June was a crazy month for us. Travis accepted a job offer and promotion within his company. I visited my dad in Massachusetts while my sister and mom hiked El Camino de Santiago in Spain. We said goodbye to friends and family in Maryland, and moved down here without either of us ever seeing where we would be living (talk about a leap of faith)! It has been a month full of change and stressors that COULD have really gotten me down physically, but I think we weathered this storm of change relatively unscathed!
One of the biggest triggers for any “snowflake warrior” is stress, whether emotional or physical. In the world we live in today, stress is unavoidable. The easy thing to do would just be to avoid everything, but life would be so empty and lonely. Trust me, I’ve been there with the two years of homeschooling. Even then, stress still entered my life! I haven’t always handled stress well (remember the control issues?). But there are a few thing that have made it easier for me to handle stress so I can stave away my symptoms and keep MG from running my life.
1. Communication & Calculated Risk – Travis and I sought out a lot of pre-marital counseling before our wedding. To most people it seemed excessive. We met with a licensed counselor and his wife weekly for 6 months. We took a 16 week class through church which met 2 hours every Sunday morning, and met monthly with a mentor couple through that class. We worked through a lot of things during those many hours that won’t be shared on here – but what I can share is how we were able to come up with a system so that my husband could support me. He studied kinesiology in college, and has a passion for and an understanding of human movement disorders (he was pre-pt until his post concussion syndrome made him put off more schooling). He wants me to be strong and wants to push me to do new things so I am not afraid. I like to stay safe and comfortable because I am afraid of trying something new and not being able to do it. We have a way to communicate openly and honestly about this so that I can take calculated risks, and also have him protect me from getting too stressed and symptomatic. I never thought anyone except for my mom would be able to advocate for me in this way, but he took me by surprise and is fully invested in helping me lead a full and active life.
2. Art – I let myself slide sometimes, and am not always the most self motivated person when it comes to my art. I blame having too many interests and not enough time. That’s a whole other story. But when I do schedule time daily to paint and photograph, my mood skyrockets and my symptoms plummet. It is a way to express myself (how cliche), but also a way to interpret and understand the world around me. Travis tells me I am a better person and a happier person when I paint. So really, I need to do it more.
3. Exercise – It seems counter intuitive to exhaust the muscles with exercise when you have a neuromuscular disease that causes extreme muscle fatigue. But exercise is actually extremely important in my health journey. It allows me to set goals, to see my body as a strong temple, and to connect with my husband. There have definitely been more than a handful of times where I have been reduced to tears in between circuits. “TRAVIS THIS IS TOO HARD I CAN’T DO IT”. And he reminds me that actually, I’m just maxing out, and that’s how I build strength and muscle… and I am doing so much more than many who don’t have a disease. We like to call it playing life in hard mode.
4. Clean Eating & ENOUGH – Anyone who knows me knows that I love a good donut, baked goods, and a corndog. Yes, I do occasionally indulge in these guilty pleasures. But I would say Travis and I eat 80/20 clean. 80% clean and 20% processed. It takes some extra time to meal plan and prep, but my body thanks me for it daily. Literally, I can feel the difference. It is a sacrifice financially to spend a little more for local and organic food, and plenty of it. Health is an investment that Travis and I are willing to make.
5. Routine – I do my best to keep to my health routine: taking medication at scheduled times, staying on top of blood work and doctors appointments, and evaluating how I am feeling regularly. It seems excessive, but it helps me understand what causes symptoms. This is actually what helped us figure out that I have a sensitivity to tree nuts! There is a fine line between keeping track on my health and becoming a hypochondriac, but so far I think I’ve stayed pretty level headed. In Maryland my routine also included regular acupuncture treatments and shiatsu massage at my work, which I will miss so much! I am so thankful to have had a year of exposure to alternative wellness medicine at a center passionate about creating a working relationship between Western and Eastern medicine.
I have so much to be thankful for at this stage in my journey. There are times when I get discouraged, and it would be untruthful to say otherwise. There are times when I pity myself. However, I have a great prognosis and I have taken ownership of my health and my body. I have MG, and it does not have me. I have done so many things that 10 years ago I never thought possible. I have traveled the world, finished college with honors, volunteered my summers to ministry, got married, and have taken leaps of faith in each of those. Some were not without hardship and symptoms, but each year that passes by, I feel less and less like I am missing out. The biggest detriment to living the width of my life is comparison. My life won’t look like yours, but that is because my life is not yours. My life is the Lord’s, and I will continue to live fully this call of endurance with dynamic, active, directive and life sustaining hope.