There is a saying that “healing is not linear.” Living with a rare disease is also not linear. There are endless ups and downs, and it takes courage to navigate the sometimes-turbulent waters of uncertainty. My condition, myasthenia gravis (MG), has been on a decline the last few years, but after surviving sepsis last year and having to make multiple treatment changes, my disease is worse than it has been in years. My ADLs (activities of daily living score) has doubled, which was a shock to me. Yet I have found some ways to work around disease decline and reframe acceptance.
Accepting where I am
The first step has been accepting that I am struggling more. Last year, I developed sepsis from an infected port and a blood infection. I was seriously ill all of the end of last year and had to be off some of my treatments in the process. I thought I would be able to eventually bounce back, but that hasn’t happened. I was lucky to survive, but sometimes when you survive something that serious, it leads to long-term complications and challenges.
I am trying to accept that this is part of the process of sepsis survival. My body and my life have irrevocably changed. It’s OK. I just have to adapt to these changes. There’s not always an explanation for disease decline. My experience with neuromuscular disease is that it is always in flux. It’s just a matter of accepting wherever you are that day, that month, that year.
Finding new strategies
Disease decline also means adapting; it means focusing on basics. I have lost more of my independence, so it takes more energy to get dressed, bathe, get to appointments, do my infusion treatments, etc. It also means pushing through the frustration that these basics are harder. It’s just a matter of finding strategies.
I have had to adjust my diet because swallowing and chewing are harder. I rest throughout the day, but now I have had to prioritize it even more. My long infusion days are harder. Thankfully I get them at home. I spend much of that time during my treatment in bed. It exhausts me even more now. I try to still do some kind of movement to not get deconditioned, and I’ve had to adapt how to do that. As hard as it can be to move with MG, it’s important to keep finding a way — losing strength and stamina is even more damaging to our condition.
Sharing challenges and asking for help
When you’re doing worse overall, it’s essential to communicate this to family, friends and your medical team. It may not be obvious to everyone that you are doing worse or that you are even just having a bad day.
My neuromuscular doctor has helped me come up with a new treatment plan to try to improve my condition. My other doctors have been supportive as I am trying to get back to a better baseline. My infusion nurses have been supportive while I get even more fatigued during treatment.
My husband is my caregiver and he understands that I have needed more help with everything this year. I have also relied on the patience of family, since I am more limited now than I have been in years.
Overall, everyone has been supportive and that has helped me manage the frustration and disappointment of disease decline. It can be challenging to communicate these challenges, but we also have to remember we often have access to help.
Finding joy
We cannot forget that doing activities that bring joy is still essential if you’re doing worse, and may be even more important. I still find energy to watercolor paint, listen to music, text with friends, work on advocacy and spend time with my husband. It may take more careful planning and rest throughout, but finding joy where you can is necessary to live, not just survive, rare disease.
I try to remember there have been countless ups and downs over the years with this disease. It just takes patience with my body, particularly after surviving a life-threatening infection. Showing yourself kindness and compassion through it all is part of acceptance and finding strategies to keep going. And no matter the obstacles, we must keep going.
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