Independence Day is right around the corner. It got me thinking, how do I maintain my independence with myasthenia? To be honest, it can be difficult at times as I really do not enjoy relying on other people to tend to my needs. Everyone needs a little help now and then, but with an MG diagnosis, you may need more assistance than the average person. A myasthenia gravis diagnosis does not mean all freedom is lost and I have found there are certain things you can do to maintain your independence. Check out these tips below on how to remain self-sufficient with MG.
Early Bird Gets the Worm
One of the hallmarks of myasthenia gravis is that weakness tends to worsen as the day progresses. I am usually awake at 6:30 AM and by 2:00 PM, I need a nap. Of course, this timeframe flexes as some days I am stronger or weaker than others, but I can usually count on needing to rest mid-afternoon. I try to work as much as I can in the morning and thankfully I have the flexibility to do so. Thus, prioritizing tasks in the early hours of the day is essential to my independence. If you are in a position that allows you to get things accomplished at your peak strength, do it!
Militant with Meds
When I was initially diagnosed, I was in pretty bad shape. I’ll never forget the first time I took Mestinon (pyridostigmine); it was like a jolt of strength I had been missing for over 2 years. Since then, I have been incredibly diligent, staying on top of my medication schedule. Although my MG is at a point where I know my body well enough to know when I need another dose, I still try to be as consistent as possible. Sticking to your medication as prescribed and having an open-ended conversation with your doctor about the right treatment plan is incredibly important in maintaining your independence.
Work Smarter Not Harder
Lately, I have been searching for products that will make my life a little bit easier. For example, I find cooking to be exhausting and totally daunting, but I really try to maintain a healthy diet. In efforts to minimize the fatigue and foster strength, I have invested in different devices such as this jar opener or a stool to sit down when I’m preparing a meal. There are also products that aid in activities of daily living such as silicone sleeves that turns bottles into squeeze dispensers. With MG, grip strength can be an issue, so something like this can be really helpful.
Advocate for Accommodations
Whether you are in school or the workforce, it is important to advocate for yourself and the things you need to be a successful student/employee. When people hear the word accommodations, I feel they believe this denotes being “needy,” but quite frankly, everyone learns and works differently. There is not a one size fits all to this sort of thing even though society says there is. Advocating for things that will make you an effective worker only demonstrates your desire to thrive in the role you find yourself in.
Teamwork makes the MG work
MG is a unique disease and unique to the individual that copes with it, but as one doctor told me, “MG is a family disease.” What does this mean exactly? In my opinion, I see it as a “all hands on deck” situation. It takes a village to fight MG; a care team, a strong support system, personal resilience. I’ve resisted asking for help so many times only to realize I am doing myself a disservice. We can’t fight our battles alone so do yourself a favor and ask for the help…in the end, it can be quite liberating.
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