As written by Sascha Gallardo June 14, 2023
Imagine getting up in the morning…
…You hit the shower. But while washing your hair, you have to put down your arms every few seconds and rest.
The same goes when washing your body. Soap, lather, rest. Soap, lather, rest.
After taking a shower, you dress up and then eat breakfast.
But unlike most people you know who eat bread and eggs for breakfast, you usually make yourself a smoothie with some fruits, greens, and milk. Chewing food can be difficult. Your facial muscles get weak after a few bites.
After breakfast, you take your pill, clean the table and then head to the bathroom to brush your teeth. Like taking a shower, tooth brushing also requires you to rest your arm after every few seconds.
Preparing for work in the morning takes a lot of time. You just can’t rush it, if you want to have the energy to tackle your day.
Of course, you also need to pace yourself at work. It’s a good thing that your employer has a good program when it comes to accommodating the needs of employees with disabilities.
You have your own work routine. You have more mini breaks throughout the day compared to other employees. And if needed, you can work from home.
But today is relatively a good day. So you want to make the most out of it.
After checking off the first item in your to-do list at work, you move on to the next which involves talking on the phone.
Half-way through the call, you notice yourself having difficulty breathing. So you cut it short, apologize to the other person, and promise to call back later in the day.
You take a short break.
Despite dealing with a rare autoimmune disease that has significantly altered your life, you consider yourself lucky.
Once in a while, you get comments like “I know someone who has Myasthenia Gravis, but how come her symptoms are not as bad as yours?” Sometimes you ignore them, sometimes you explain that each patient’s case is different. After all, it’s called the snowflake disease.
Other than these irritating comments, you could say that there are so many things you’re thankful for.
You have a job, which also gives you access to good enough insurance coverage. You’re able to get regular treatment. It may not have brought your life back to the way it was, but your symptoms are now manageable. Other patients are not as lucky finding a treatment that works for them.
You’re thankful for your employer for being so understanding. For your officemates, for being supportive.
But boy, you get sad sometimes. You miss grinding. You miss arriving early in the office before anyone comes in, and starts getting things done right away.
You used to work non-stop. You were always in the zone. Except during the designated breaks, people always see you at your desk working.
You were the type of person who just loves being productive….
But before you spiral into negative thoughts, you stop and bring yourself back to work.
You checked off another to-do before lunch break, had lunch and took another pill. You called back the person you were talking to earlier and finished another task in the afternoon with a couple of breaks in between.
There’s still much time before 5, but you decide to just list your to-do’s for the next day and rest. You can’t overdo it, or else. Good thing, it’s already Thursday. Just one more day and it’s already the weekend, you have more time to rest.
But then you remember, your plasmapheresis treatment is scheduled on Saturday. More than half of your day would be devoted to this, including the travel time. And you might experience a few side effects. But oh well, it is what it is.
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Myasthenia Gravis is a chronic autoimmune disorder that affects the neuromuscular junction, causing muscle weakness and fatigue. This condition can significantly impact a patient’s life, as it can cause difficulty with everyday tasks such as walking, speaking, swallowing, and even breathing, requiring ongoing medical management and lifestyle adjustments to maintain functionality and quality of life.
Increased awareness about Myasthenia Gravis helps patients by fostering understanding and support from the general public, improving early diagnosis rates, and promoting access to appropriate medical care and resources for managing the condition.
If you or anyone you know is affected by Myasthenia Gravis, we invite you to join our free Living with Myasthenia Gravis community so you can get in touch with people who truly understand what you’re going through.