The abbreviation for Myasthenia Gravis is MG. The nick name is snowflake disease because symptoms vary so much from person to person. Also, symptoms vary and change within the same person. Previous articles describe symptoms, diagnosis, and treatments. Now I will focus on getting by from day to day. This chronic disease changes everyday life.
KEEPING ITEMS IN REACH, CONSERVES ENERGY. The muscles that help me bend down and reach up do not work well. Some times it is more difficult to maneuver than others. It helps me to be prepared. Keeping dishes, food, and other kitchen items in easy reach helps. Keeping things in the same place in the refrigerator and cabinets saves me when I am having a bad day. At times , I cannot lift and use ordinary objects. Having the milk opened and poured into a smaller container is a great help.
During the first year of my illness, I was unable to shop independently. I learned so much about accepting and asking for help. Tackling the grocery store has been a learning experience. I find grocery carts to be helpful. I can lean on the carts to make the challenge easier. Carts help me with strength and balance.
It helps to have the groceries that need refrigeration put into the same bag. Other stuff can wait in the car until I have a helper. I am finally learning that being able to tackle the store today does not mean I will be able to do it do it tomorrow.
SHOWERING DEPLETES ENERGY FOR ME. I am able to bathe and shower independently much of the time. Some folks may need medical equipment and a person to help with bathing. Sometimes I don’t have the strength to shower. At those times, I make do with a sitting sponge bath. Showering requires planning for me. Gone are the days of a quick shower before an event. I have learned to shower the night before an event. I find that if I put my effort into the shower before an occasion, I will not have strength left for the occasion. The motion of raising my arms and moving my hands to wash my hair depletes my muscle strength. My arm, leg, and breathing muscles quickly become weakened. Using a large towel to absorb the water saves the energy needed to pat yourself dry.
MY SPEECH IS IMPAIRED. Different degrees of speech loss are part of my illness. During the worst of times, nothing happens when I open my mouth to speak. At better times, my voice sounds deep and raspy as if I had a cold. Pushing this makes it worse. This is due to my breathing muscles not being strong enough to move my vocal chords. Resting these muscles is important. My speaking abilities are sporadic. My family and friends understand this loss. It is frustrating when others do not get it. I have had people ask me to speak up or repeat myself when I cannot speak. Talking on the phone is no longer a communication tool for me. I am so grateful to be living in the digital age.
RESTING MUSCLES IS NECCESSARY. I have been a slow learner when it comes to learning about the importance of muscle rest. When an MG patient over exerts their muscles, harmful antibodies get confused and rush to help. This harms the MG patient. They become sicker and weaker. This statement is over simplification, but it helps me to remember to pace myself when I am feeling good. Prior to this illness, I was a multi tasker who pushed activities to the limit. Changing this behavior has been very difficult. I ended up inpatient in the hospital four times last year because my breathing muscles were seriously impaired. This is when this disease becomes life threatening. It is easy to remember to stop activity when I feel sick. It is hard for me to remember to stop when I feel good. I miss exercise! At this point, my doctor says that I am too fragile for physical exercise. MG is so different from other illnesses. I suggest that each patient checks with their own doctor about the safety of exercise.
MY SELF ESTEEM WAS ATTACKED by this illness. Prednisone and other steroids are usually a first line of treatment to help with muscle strength. A side effect is a huge weight gain. I quickly developed the stereotypical moon face as a side effect. To treat my double/triple vision, I was prescribed stick on prisms for my glasses. I found myself obese with goofy glasses and a crackling voice.
One of my first MG symptoms was double vision. I was still working when I received my prisms. My prisms helped. I was overjoyed to be able to see again. I was not diagnosed with MG yet.
I wore my stick on prisms for about two years because I mistakenly believed my double vision was temporary. My vision changed frequently. Prisms can be ground into regular glasses, but I did not want the expense of new glasses every couple months Last summer I finally had prisms ground into my glasses. I like my frames and my lenses appear normal. This has been a great boost for my self esteem.
Someone suggested that I try a resale store to look for clothes after my giant weight gain. This was a life saver for the budget because none of my clothes fit. I see the weight gain as temporary. My steroid prescription is being reduced. I am down about twenty pounds now. Since I cannot exercise to lose pounds, it is extra hard to manage weight loss.. I would suggest limiting sodium to others who are facing this problem.
I had mentioned that I miss using nail polish. Those chemicals make my breathing worse. My friend sent stick on nails to me. Tada! This was a great self esteem boost.
This article addressed some of the concrete challenges that I have faced as a Myasthenia Gravis patient. I have acquired these coping tips as I struggled with Mg obstacles. I am blessed to have an awesome husband who helps me every day. I have friends and family who help. I am learning how to ask for what I need.
The next chapter will deal with less tangible challenges. Grief, loss, fear and depression can be part of the illness. In my next article, I will pass along some ideas for dealing with funky feelings.