One of the invisible parts of living with chronic illness and a rare disease such as myasthenia gravis (MG) is that people often don’t see how patients get through the worst days of the disease.
I often remind myself that I have survived countless bad days, weeks, and months and made it to the other side. I have had to learn how to cope with the bad days and get through them. I am not talking about the days when symptoms are so severe that I need to go to the hospital, but days I just cannot function. I have some strategies I use to get through those types of days.
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Living with MG brings new definitions for good and bad days. Usually, for me, bad days are triggered by over-exertion, treatment side effects, or disease flares–sometimes even a combination of these.
On those days, I first have to accept and acknowledge that I am doing worse than usual. That’s the first step, but that can be a hurdle, especially if I have things I need to accomplish. Once I accept that I’m having a particularly bad day, I scale back to basics: rest, hydration, and self-care.
The key is to acknowledge that my body needs extra care and no matter what I need to accomplish, just making it through the day becomes the only goal.
It’s important to communicate to family and others that you are having a bad day and need extra rest and help. Asking for help is always very difficult for me, but on bad days it is essential. Often my husband can tell when I am having a bad day, but others sometimes cannot. There have been times I have had a very rough day during my home infusion treatments, and I have to communicate to my nurses that I am having more difficulty than normal. It can be extra difficult to tolerate or get through the full days of treatment when I am doing worse than normal. Sometimes I don’t make it through my full treatment. I just try to remind myself to work with my body and not against it.
On the roughest days, I try to make a plan and focus on self-care, which often involves resorting to the things that give me the most comfort. If I’m in a bad respiratory flare, for example, I usually stay in bed on my BiPAP most of the day and focus on limiting movement and exertion. I will watch a show I love or listen to an audiobook I enjoy. I listen to relaxing music I love and look out the window–anything to find distractions and something uplifting.
I also use a meditation app called “Insight Timer” which helps me not feel overwhelmed by my symptoms. The mental health part of bad days can be truly overwhelming. It can be difficult not to feel anxious, panicked, or depressed on the most difficult days. I try to remind myself that on the worst days, I often feel a little better the next day or eventually. Focusing on acceptance and trying to stay calm is key. Anxiety and stress only exacerbate MG. I recently worked with a therapist on my medical anxiety, and she recommended being “indulgent” on the worst days–really hunkering down and finding comfort in whatever I can.
Enduring difficult days is part of living with a serious disease that can be life-threatening at times. In the 9 years I have had this disease, I have survived countless bad days. I was even bedridden for a couple of years and have been hospitalized many times. I regularly remind myself I have survived all of that. The key is accepting the ups and downs of the disease and creating strategies to get to the other side of the difficult times and back to the “normal” and brighter days.
