The Importance of Self Care

By Claire Denton

2 min read

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Jazmin Clayton Moderator
Thank you for sharing Claire. I too know how difficult/scary it can be to be getting a treatment and finding out you're allergic or get another medical problem due to a treatment that's supposed to help you. I admire that actually take the time to sit down and heal. I for one have a hard time doing that. I get that trait from my dad it's very hard for us to sit down and rest even when we're sick. I love that you have an adult coloring book because I do too and planned on doing a little coloring today. My healing process for me is writing in my journal. It's the only thing that can have my complete and undivided attention without burning through my energy. - Jazmin (team member)
Juliana Texley Moderator & Contributor
Thanks for sharing. Seeing concrete improvement can take a lot of time. We were told to expect at least 3 months before seeing changes when my hubby began imuran. When the improvements were evident, the prednisone could be reduced and that helped a lot. Everyone is different. But it's important to realize at the outset that this isn't strep throat; you won't wake up the morning after you start a drug and say "Aha!" That's why we so appreciate people who write stories like this, that we all can share. Juliana (myasthenia-gravis.com team.)
Juliana Texley Moderator & Contributor
Your story will help reinforce for many what a long journey MG can become. With every report of someone who responds to drugs and achieves remission there are other stories of continued struggles, constantly changing plans, and frustrating decisions. I was glad to read about the celebration mid-story. Life goes on. I also shared a smile with the note about the dogs. My husband's therapy dogs are a real asset in the house--a touch of normalcy even when they are making confetti out of some note I needed! Thanks for taking the time to write this. It's important for all of us, those who struggle to beat MG and those who want to support them, to realize that patience is a good medicine in itself. Keeping people up to date in a brief way, without letting that sort of news bury everyday life, is important too. Juliana (myasthenia-gravis.com team)..