As much as it is considered a time of joy and family, the holidays can be a stressful time for everyone, particularly when living with a rare disease. It’s difficult living with the memory of everything I used to be able to participate in during this time of year compared to how limited I am now. But I still make a determined effort to participate where I can.
The key, I have found, is pacing myself and setting boundaries so that I still get to experience that joyful time but don’t end the year completely depleted.
Managing my myasthenia gravis (MG) takes nearly all of my energy, especially appointments and my constant infusion schedule. Every year I try to limit the number of appointments I have in November and December as much as I can so that I can spend less energy on those. I also try to not do any treatment changes during the end of the year. My infusion schedule cannot be reduced, so the key is just trying to rest, hydrate, and manage it the best I can around the holidays.
I’m homebound and my husband is my caregiver, so it just takes extra planning for both of us during this time of year to be able to participate in holiday gatherings. The amount of participation I am able to do has decreased over the years, but we traditionally have a few family members over on Thanksgiving and spend Christmas day with my husband’s family. It’s very important to me to be able to participate in those. I look forward to them all year and saving energy for those holidays.
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Because of my respiratory weakness, speaking is very challenging for me, and that’s often how I overexert myself. I regularly have to remind myself that participating also means being careful how much I speak. My close friends and family know that is my most difficult symptom to manage and has been for many years. But sometimes I have to remember it’s ok to remind them and myself of boundaries and need to limit how much I can talk.
Not every patient with MG has so much difficulty with speaking, but we need to all be aware of how we spend our limited energy so that we don’t end up overdoing it. I’ve spent too many Januarys in the hospital because trying to do too much during the holidays contributed to triggering an MG crisis.
I also have specific food needs, and that is always an essential conversation that needs to be had before gatherings. I mentioned in a previous column that difficulty chewing and swallowing can be common symptoms for patients with MG. Indulging in rich food is such a part of the holidays, but for patients with MG we have to be extra mindful about what we are eating, and this is still true during the holidays.
In all the chaos of managing a serious disease, I also try to make room for gratitude at the end of the year–gratitude for any time I was able to spend with friends and family and for being able to participate however I can. I feel gratitude for being able to celebrate a new year and for everything I was able to accomplish during the year. There have been times during my illness it was difficult to feel celebratory.
We should all find space to celebrate getting to see another year and all the times we were able to thrive throughout the year.