Navigating Lupus and MS Within My Limits and Without Boundaries


Of course, living with lupus affected me in different ways; joint pain, numb extremities, difficult pregnancies and exhaustion would be the side effects of the disease but it would not define my life. Initially I was terrified, but as I began to navigate around life’s detours the landscape of my life changed. I changed.

When I was diagnosed with multiple sclerosis (MS) as a mother of three young girls, I used my life experience with lupus to help propel me forward. I knew nothing about this new autoimmune disease but thanks to the Internet I had an opportunity to be terrified and calm all within one double-click.

Living with two chronic diseases changed me as a parent, partner and friend. I lost patience and gained a new level of empathy. I knew pain and realized that I must respect the boundaries of my life without setting any limits to my potential.

I learned I must challenge my body every day. I run almost every day with a phone and a mental note about who I could call if I don’t feel well. I position myself by the door in hot yoga classes, to make a fast exit if something doesn’t feel right. When I see a hill, I sprint to the top and catch my breath before I #HIIT the next hill. Being uncomfortable in this life was the only way to transform my life.

I need to listen to my body. I take a day off from life if my body demands. If I have pain I go see a Dr, and make sure my actions will not make me worse. For me, the fear of pain is more debilitating than pain.

I can say no. My time is precious and I have learned to be selfish. Someone once told me that, “You can’t clean someones else’s gutters, if your gutters need to be cleaned.”

I will only surround myself with positive energy and love. I started to “block callers” out my life. Today was a gift that was not going to be wasted on the wrong people.

I do not let obstacles stop me from my goal. I believe obstacles are just opportunities to learn something new. Failures, repeated failures, are finger posts on the road to achievement. “One fails forward toward success.” — C.S. Lewis

My life was the example of respecting the boundaries of life without accepting any limits. I learned that being in fear of pain and failure was more debilitating than pain and failure, wasting time obsessing about excuses would just slow me down, and grandiose failures were not as painful as setting limits.

At the age of 43, MS has given me some detours, my skin feels like it on fire at times, I have pain in my jaw that will stop me in my tracks, my left side has noticeable weakness, and yet last weekend I charted a new path with this disease. Last weekend I went hiking for the first time since I was diagnosed and to celebrate my marriage of 22 years. I was scared because of the weakness on my left side and my recent balance issues.

At the age of 18, I hiked my first mountain with my boyfriend, at the time. When I told him that I needed a gallon of water at the summit, he carried my water in his pack. I was young and fit and struggled to climb to the summit. Halfway up, I remember asking him if we could just turn around at the first nice view. I was young and in shape and struggled with no pack up that first mountain. I finished that hike with his support and that gallon of water at the summit.

Of course, I was engaged immediately after that hike. After being married for 22 years it was a good test of any relationship and it was why it only took us two weeks to know we ready to get married. For the past 22 years we have both carried that back pack. I carried his baggage as much as he has carried mine.

young woman and man on hike and same woman on a hike years later

On our hike to celebrate 22 years married and 25 years together, I wanted to carry the pack with not just my water but all the supplies. I flew up the mountain and ran with that full pack. I have improved with age, experience and my family and friends.

My husband did take the pack as soon as we hit the really scary part of the path. It was a good call because the pack was so heavy that I almost fell back a couple of times. So, although I feel like I have no limits… I am no fool. I am conservative risk taker.

At 43, I am still married to the boy who carried my pack. I have learned the difference between respecting life’s boundaries and working through the pain.

I have been warned to not run, be careful with the heat and don’t get too tired. I run on hot days and love my hot yoga classes. MS is a mystery to me and I continue to learn more and more about this white matter disease everyday. My journey is unique but my lesson is universal.

This blog was originally published on Nakohealthfit.

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