A Day in the Life of a Person with MG

A Day in the Life of a Person with MG

What is the first thing you do when you wake up?

You might have answered, “I take a shower” or “I drink coffee.” However, the first thing everyone does when waking up is to open the eyes. It is a movement so simple that most of us take it for granted — until the ability to do so has been compromised.

For someone living with myasthenia gravis, even opening our eyes prior to taking the right medicine is a massive struggle. Sometimes, even when we can open our eyes, we have double or blurry vision. This is because MG causes muscle weakness, which includes the muscles in our eyes. Being unable to see clearly, despite our best efforts to squint or move closer to a specific object, can be demotivating at times.

As I have said in a previous column, MG teaches us patience. With rest, our symptoms can improve (although improvement does not necessarily mean they disappear.) Luckily, I have found other remedies. Applying ice packs to my eyes or wearing an eye patch (if only one eye is affected) may help.

The next part of the day is getting out of bed. This also is difficult for someone living with MG, as we might suffer from generalized weakness as well. This means that all the muscles we can willingly control may be affected. This includes arms, legs, the neck, and others. Having weak arms and a weak core makes getting up from a lying position much more difficult. Think about how a healthy person would move if they had weights attached to their limbs; it would be slow and laborious. That is what moving with MG feels like.

Eventually, we have to eat. This activity may also be influenced by MG. As I take my first bite, my arms feel heavy while I lift the spoon, and my lips struggle to stay closed. Sometimes this causes food to spill from my mouth or my spoon. Eventually, I try to chew, but with every bite, I feel my cheeks and tongue becoming more tired. This sometimes leads to choking and violent coughing, which are both exhausting.

As I swallow, I may experience food getting stuck in my throat because my muscles are too weak to force it down. I have found that adjusting my diet helps most with these symptoms. I try to avoid hard-to-chew foods like beef jerky and excessive helpings of cooked meat. I have swapped my porridge in the morning with yogurt, and I try to eat only after I have taken my first Mestinon (pyridostigmine) tablet for the day.

Then, I have to walk down the stairs from my apartment to my car. The figurative weights on my legs seem to get heavier with each step, and by the time I reach the bottom I am gasping for air. This is because the diaphragm, the muscle that helps to exhale, is also affected by MG. Not only is seeing, moving, and eating difficult, but breathing is, too!

This is the reality of living with MG. Activities we are required to do daily become strenuous tasks that can leave us exhausted before the day has even started.

Luckily, MG does not affect the functioning of our brains. We are always in control of how we choose to respond to these symptoms. That does not mean that there aren’t days when we are overwhelmed by all these symptoms. It simply means that we can control our thoughts. How our friends and family react to our symptoms also can affect how we perceive them. Support is a pivotal part of managing any chronic illness.

Never forget that life is beautiful. Always keep fighting.

***

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

I’m a 24 year old from sunny South Africa. I’ve been dying with a twist since 2013 when I was first diagnosed with myasthenia gravis. I can speak four languages and I’m a lover of life and all things wild.
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I’m a 24 year old from sunny South Africa. I’ve been dying with a twist since 2013 when I was first diagnosed with myasthenia gravis. I can speak four languages and I’m a lover of life and all things wild.

4 comments

  1. Cornelia Freeman says:

    Knowing someone with this condition & seeing them. In action, gives me a little more clarity. On their daily activity, which is really a struggle. I work in the medical field, I care I’m compassion, patient, & understanding. I work with people that are younger than me. With chronic illness. At my age I’m so grateful, thankful to God for my health. And I can spread some, joy, love, encouragement to those. That their health isn’t so good.

  2. Rebecca says:

    As a person with MG diagnosed over 20 years ago, at age 42, I am struggling. The last year my insurance would not pay for my IVIG I have received for 20 years and maintained life, and have been put on Soliris. It does not work for me and now the last 4 weeks I have a hard time walking, jaw locking up, and no energy. This article explains a lot for those who don’t know what I experience daily. Thank you for sharing!

  3. Barbara Amdur says:

    I FIND IT VERY HELPFUL TO HEAR FROM OTHER PEOPLE ( OF ALL AGES) WHO ALSO SUFFER FROM MG. BUT THERE CAN’T BE TOO MANY PATIENTS WHO ARE AS OLD AS I AM! I WAS DIAGNOSED WITH OCULAR MG 3 YEARS AGO——AND NOW–AT AGE 90–I HAVE MUSCULAR MG AS WELL.
    LAST YEAR I HAD 2 “BULBAR CRISES” WHICH RESULTED IN 2 TRIPS TO THE ER BECAUSE OF SEVERE CHOKING SYMPTOMS.
    10 DAYS EACH TIME IN THE ICU HELPED ENORMOUSLY.
    THE ONLY ADVANTAGE TO GOING THRU ALL THIS IN ADVANCED OLD AGE IS THAT ONE NEVER GETS ANY BILLS—MEDICARE AND MY SECONDARY CARRIER PAY FOR EVERYTHING!

  4. Gloria says:

    Please can you help or advise me. I was diagnosed in 2014. I have had a thyetomy. Lately I find that I am extremely weak when I first wake up. However as the day progress I am stronger and stronger. I am having difficulties convincing my consultant.

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