The Importance of Self Care
The past 2 years have been extremely challenging for me and for my family. I was diagnosed with myasthenia gravis (MG) 27 years ago and there have been rough times as well as periods of drug-induced remissions.
There are a lot of times when living with MG can be challenging, particularly with treatment-refractory MG.
Struggles with treatment
I am now allergic to Rituxan, which was the last medication left that we hadn’t tried yet. I was forced to be treated 3 times a week with plasma exchange.
I had a catheter placed in my chest. We used the catheter for 6 months. When it was removed I developed sepsis which was extremely scary.
After being hospitalized for a week, I was released in time to watch our daughter graduate from high school! There is always a bright spot- sometimes you just have to look really hard for it.
Taking an emotional break
It was decided that we would attempt treatment with Rituxan in an ICU setting, which allowed for strong antihistamines and steroids to be infused along with the Rituxan.
At the moment, I am pretty well controlled on the Rituxan as well as Myfortic (an alternative to Cellcept). My point in telling you all of this information is that I had to take an emotional break from all things myasthenic.
While I can’t ignore my symptoms or avoid treatments, I can tell people that I want to take some time to not talk about MG. And I really think that is okay.
I keep friends and family updated via text so I don’t have to talk about things I would prefer not to, particularly in front of our children, while not worrying my loved ones.
Manage your mental health
As a myasthenic, it is important to take the time to manage your mental health as well as your physical health.
I use various methods of distraction that make me feel more comfortable in my own skin, including reading, listening to audiobooks, and coloring in adult coloring books when I am not strong enough to join in the outdoor activities my family and friends enjoy.
Sometimes just snuggling with one of my dogs, kids or husband is all I need to remember that I am not just a myasthenic. I am a person with lots of love around me - even if I sometimes have to find it in unexpected places.
Time to heal
Whatever it is that you do to feel mentally healthy is just as important as the medications you take to keep your disease at bay.
It helps me tremendously to remember that when I have a day I don’t feel strong enough to do much ... I am doing something. I am healing.
I am giving my body permission to not be 100 percent and recover from that. And that is just as important as any medication I could put in my body!
Have you made any MG-friendly adaptations to your home?