When Myasthenia Gravis Changes Your Sense of Purpose

Having a sense of purpose is innate to the human experience. It gives us direction, satisfaction, and motivation in the present as we build for our future. Purpose drives innovation, invigorates passion, and stirs the embers of better days ahead. Just as it breathes life into every day, a lack of purpose stagnates hope and squelches the ability to reach beyond ourselves into something bigger than what we imagine — a legacy that will last long after we are gone. 

Myasthenia gravis is a quiet, determined thief. It has a knack for finding a way into our lives in the most unexpected ways. We wait for medications and the skill to tame it, and we fight relentlessly to repeatedly sculpt and rebuild a new life despite the relentless changes. But myasthenia gravis returns and rearranges the new life that we have made, seeking to subdue our breathless wonder of tomorrow. 

Each day is like a quiet echo of itself, brimming with the hope of purpose while grieving a lack of it. Days spill into each other, passing in the shadow of what once was and what we wish them to be once again. 

I listen to the sounds of life and laughter surrounding me, which clash with the quiet frustration of restless rest. I struggle mightily against the endless days relegated to unavoidable rest, my bed a close companion, and I am thrilled when I’m able to accomplish something again, even if just for a little while. It feels so good to the human spirit to be able to accomplish and do things; to find purpose in our days, which is as vital a medication as any we could ever consume. 

MG has taught me that my body is master to none. We listen to the counsel of others as they discuss how we must find our new normals, but they don’t speak to the longevity of lives that must be continually remade. No one talks about the ever-present, albeit silent, the standard of maintaining a productive and full life in spite of our diseases, or how our lack of productivity can become a sense of sorrowful purposelessness. We are, after all, taught to value and esteem the busy and fruitful individual, inherently making busyness and purpose mutually inclusive, and in the process, we forget the very nature of human value along the way. 

What gives us value? What makes us feel as though we have accomplished something, done well, and been good, contributing members of society — members who are esteemed and considered worthy? And why do we struggle so mightily under the weight of self and familial or social recrimination over the changes in our purpose, caused by MG? 

For me (and I suspect for many others), it’s a clash between the very human and normal call to find purpose within our passions, work, relationships, ability to earn, raise families, and care for our homes, and the very real need to refocus how we think about our purpose and where that purpose can now be found. MG changes every dynamic of how we relate to the world, and those transformations can be infinitesimal or wholly life-changing. It also alters where and how we find our purpose.

A very dear and wise friend shared with me recently how her daughter reminded her anew that her value and purpose were not tied to her accomplishments or contributions. She related how her child was fully dependent on her for everything while contributing very little to the lion’s share of adult responsibilities in daily living. Yet, her daughter’s life and presence held irreplaceable value and purpose simply by being who she is. And so, too, do our lives retain unconditional purpose and value, regardless of the changes wrought by MG. 

What are Treatment Options for Myasthenia Gravis?

MG treatment also includes self-care: getting plenty of sleep, resting your eyes, pacing your activity, eating healthy foods, exercising, and managing your stress.
Listen when your body says “that’s too much.” And cut yourself some slack. Recognizing your body’s signals can take some trial and error.

Medications

There are two types of medications used to treat MG. One group—anticholinesterases—temporarily relieves the symptoms of MG. Another group—immunosuppressants—attacks the disease at its source. By suppressing the body’s immune system, these drugs stop the body from damaging the neuromuscular junction in the first place. Immunosuppressant treatments can have serious side effects.
Doctors may prescribe one or a combination of these medications. It often takes time to determine the best medication and dosage for an individual patient.

Anticholinesterase Medication

This is typically the first type of medication prescribed because it is has the fewest long-term side effects. It also is the most rapid-acting medication available. These drugs prevent the breakdown of acetylcholine—the chemical messenger that causes a muscle contraction. More acetylcholine generally results in greater muscle strength. Although anticholinesterase medication does not directly counteract the abnormal immune system attack in MG, they may partially or completely control MG symptoms in some patients.

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What You Need To Know About MG And Clean Eating

While things like acupuncture and yoga are no doubt, beneficial to your health, what many people disregard is how important a healthy diet can be.

Think about how much time we spend every day not only eating, but thinking about eating. I’m sure this was an important instinct to help make sure our hunter-gatherer ancestors were well-fed in order to survive harsh climates.

In today’s day and age, many of us are lucky. We might wonder what we’ll have to eat, but there’s never any doubt that we WILL eat.

While we spend so much of our day pondering our next meal, those with myasthenia gravis (MG) have to be extra careful.

Prone to food allergies, especially lactose intolerance, many people with myasthenia gravis are forced to notice how their body is affected by what they eat.

That’s why this blogger advocates a “clean eating” diet for those living with MG.

The best way to support your body is by giving it the best fuel. And that’s where “clean eating” comes in.

The rules to a “clean eating” diet are pretty simple. Eat foods that are:

  • preservative-free
  • hormone-free
  • chemical-free
  • unprocessed
  • natural/fresh
  • organic

Fill your diet with fresh fruits and vegetables, especially ones that are a good source of potassium—since it’s been shown to help people with MG.

And instead of eating deep-fried foods and foods cooked in all sorts of unhealthy fats, the blog recommends some healthy fats that actually do good things for your body:

  • coconut oil
  • extra-virgin olive oil
  • avocado

Since many people with MG are also lactose intolerant, “clean eating” also means avoiding dairy products and opting for lactose-free. Though, if you’re one of the lucky MG-er’s who doesn’t have a lactose intolerance, then by all means, eat cheese and ice cream while everyone else stares at you jealously.

This goes for any other food allergy as well. While this diet promotes eating a lot of seeds and nuts, those are common things to which people are allergic. The whole point is to eat foods that are nutritious, easy to digest, and good for your body. Anything that doesn’t fulfill those requirements for you, even if they’re on the list, you should avoid.

The blog even includes a basic food list for you to get an idea of what you could eat on this type of diet.

Though, really, it’s less of a diet and more of a way of life.

The goal isn’t to lose weight—though that does happen for many people! The goal is to make your body healthy and support it in every way you can.

Lifestyle Tips for Myasthenia Gravis

The first step to managing your condition is to accept that you have it. From then on you can move forward.

We have listed below some helpful hints on day to day living with MG.

  • Bathroom
  • Do’s and Don’ts
  • Drugs (non-MG related)
  • Eating & Swallowing
  • Education
  • Emergencies
  • Family, Friends and Peers
  • House Work
  • Information Sheet
  • Kitchen
  • Medicines for MG
  • Neurologist
  • Personal Hygiene
  • Support Groups
  • Shopping
  • Visual Difficulties

Bathroom

  • Install grab bars in the shower, near the bath and near the toilet. If showering is tiring, use a chair in the shower and in the bathroom in general so that you are not standing whilst shaving, brushing your teeth, etc.
  • Consider installing shower heads with flexible hose. You can then bring the shower head closer to your body, allowing faster rinsing.
  • Replace old fashioned tap spindles with tap mixers. A mixer is one handle that turns water on and off and controls temperature with the one easy movement (the old fashioned tap heads not only need a strong grip to operate, but require the strength of Hercules to turn the water on and off!)
  • If possible, have the shower recess separate to the bath – climbing out of a slippery bath could be challenging and dangerous if you have difficulties swinging your legs over the edge.

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Myasthenia Gravis: What You Need to Know

“Myasthenia gravis” literally means “grave muscle weakness,” but many cases are mild, and life expectancy is normal.

The muscles around the eyes tend to be affected first, causing the eyelids to droop. Patients may experience double vision, weakness in the arms and legs, and difficulties chewing, swallowing, speaking, and breathing. Involuntary muscles, such as the heart muscles, are not affected.

Symptoms often worsen with physical activity and improve after resting or a good night’s sleep. There is no cure, but treatment can relieve and even remove symptoms.

The condition affects 14 to 20 people in every 100,000 in the United States, or between 36,000 and 60,000 people. It can happen at any age, but it is more likely to affect women before the age of 40 years, and men after the age of 60 years.

Signs and symptoms

[woman in wheelchair]
With myasthenia gravis, the limbs can weaken.

Symptoms of myasthenia gravis (MG) vary widely. In some people, only the eye muscles will be affected, while in others, it can impact many muscles, including those that control breathing.

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5 Things to Do in a Myasthenia Gravis Crisis

I had one of those moments yesterday. I woke up, ran some errands, went about my day as usual then sat down for dinner. I could feel myself getting weaker throughout the day but thought I could negotiate my way out of it. The conversation in my head went like this:

Me: You’re ok. Just finish dinner and you can lay down.

My Body: I’m not ok!!! I’m not ok!!! We are going to die right here in the middle of the fried rice. Abort! Abort! All hands on deck!

Me: Calm down body. You are going to be fine. You are just tired and we waited to long to eat. Let me finish dinner and we will go to bed early.

My Body: NO!!!! I’m melting! We are starting to have a problem breathing and we will probably have to go to the hospital or maybe we will faint again. Oh God, I think we are going to faint! I hate fainting! Wait, I think we just lost our legs and the arms are close behind. Save yourself! This shit is getting real right now! We are going down!!!!!!

If you haven’t noticed, my body is a bit of an alarmist. Although it has plenty of history to warrant PTSD, we have been though a lot over the past 7 years. It had been a long time since I’d had a complete system failure so I guess I was due. I had missed many red flags that it was coming.

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