A New Home Base Despite an Old Set of Woes

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by Shawna Barnes |

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We made it!

Seven states, 35 hours, and five weather types later, we arrived at our destination. Moving cross-country is not for the faint of heart, but with a little planning and a level head when problems crop up, it’s doable.

Our home sale in Maine had some hiccups and caused a significant delay in our departure, which not only set our timeline back, but it also set me back. I planned for a variety of hiccups, but there are some you just can’t plan for. Because of one of those hiccups, I had to be much more physically active than I wanted to be, given my myasthenia gravis (MG). As a result, I was a little weaker in the legs than I preferred at the start of this journey.

I was very thankful to have had a good friend as a copilot for the drive, to help offset any negative impact from this extra activity. Thank goodness for great friends and a community that rallied behind us in our last hours in Maine.

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On the road again

Our first stop was New Hampshire to pick up my husband’s friend, who would be driving with him in the moving truck. Since we got the later start, we had to do more night driving. I was worried about that because I have ocular symptoms that include ptosis (when the eyelids droop) in my right eye and double vision when my eyes get tired.

Following behind the moving truck in my van, though, seemed to help with my concerns; I didn’t experience the level of eye fatigue or strain that I’d been expecting.

Once we picked up my husband’s copilot, we headed west through Vermont, New York, and Ohio. Once we hit Michigan, we “hung a righty” to go north through the state. The small town we moved to in Wisconsin is in the north, not far from the Upper Peninsula of Michigan. We wanted to avoid any major traffic snafus of driving through a big city like Chicago, so we took the more scenic route.

We managed to drive through rain, sleet, snow, dense fog, and high winds. Despite how well I planned for this move, you can’t plan for Mother Nature. Having the windshield wipers going fast during torrential downpours is something that can cause me eye fatigue and blurred vision. Once again, I was thankful to have help driving.

Home sweet home

At 5:30 on Saturday morning, we pulled into the driveway of the place we now call home. Now it’s time to unpack, get connected with all new doctors, meet folks in the community, and get settled into a new normal.

Planning is something that we can have control over when we as myasthenics feel like we have no control over our bodies. While a lot of what we faced during our travel I couldn’t have anticipated, my planning helped me keep a level head so I could pivot and adjust as needed. I had a set of expectations for how the move would go, what I would be capable of, and the type of help I would require. I thought those expectations were reasonable, but in reality they were a little high.

I’m doing my best to not beat myself up over how little I can help my husband with getting settled and unpacked. Rather than focusing on what I can’t do, I’m focusing on what I can do and taking over the tasks that require little to no physical exertion — like establishing utilities, setting up trash pickup, and getting mail services squared away. These are all things I can do from the comfort of my chair using the tools I have available to me: smartphone, tablet, and computer.

It was a long trek, but my MG played nice. Now it’s time for me to go frolic and play on our little homestead in northern Wisconsin.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

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2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.