Being Slow in a Fast Moving World

Myasthenia Gravis (MG) has slowed me down. MG is an autoimmune neuromuscular disease that effects all of my muscles. The effected muscle groups fluctuate. The muscle weakness is made worse by use. Resting the muscles sometimes helps for a while.

I am moving into my fourth year of coping with this disease.  This is a chronic illness. There is no cure, but there are treatments.  I am grateful to say that I am benefiting from treatment.  During my first year with MG, I tugged an oxygen tank and needed a walker or wheel chair to get around.  I now usually need oxygen only during the night.  I swallow a handful of pills a few times per day (immunosuppressants & anticholinergics).  Every three weeks, I spend a day at the infusion center for IVIG treatment.

With this help, I am getting around better.  I move around independently.  I can often socialize for about two hours.  At the two hour point, my double vision becomes extreme.  I drop things.  My voice weakens.  I become very embarrassed of these symptoms.  But, the important thing is that I feel pretty normal during those first two hours.  During those times, I feel like the woman that I used to be.  I was a multi tasking professional.  I met deadlines and productivity expectations.  I was active , fun, and helpful.  I mention this because I think many of us mistakenly believe that active people do not get sick.  We do.

Now meet the slow me.  I repeatedly find myself in this scenario.  I stand at the curb of a street or parking lot, waiting for a long break in traffic  A car will stop and motion for me to cross.  I shake my head “no”.  They stubbornly stay there and continue to tell me to cross. This type of person often has a big grin on their face.  To me, this grin says,  “Look at what a nice person I think I am”.  If I give in and begin my slow trudge across the street, the driver’s grin becomes a frown.  I cannot move fast.   The driver begins waving their hand quickly in the direction that they want me to move.  This could all have been avoided if I could have simply crossed the street during a traffic break.  I am learning to ignore these yahoos that insist I cross, in spite of the nasty face that they might make.

My MG is now an invisible disease. I am currently not using a walker or oxygen when I am out. This does not mean that I am healthy or that I feel good.  I am learning a lot about human nature.  Many people like being in a caretaker role. These same people are less kind to those that they see as having equal abilities.  I have heard other MG patients talk about how misunderstood they felt when people said that they look  good. People with invisible diseases are often met with disapproval for needing handicapped parking. We are seen as sleepy when our eye muscles droop. We are seen as soft spoken when our vocal cords weaken.

I have found that a good place to spread my recuperation wings is the grocery store. I go there at odd times to avoid crowds. The supermarket is an exercise opportunity. I reestablish my leg strength.  I can lean on the cart as I do my laps in the aisles.  Again , people were quite patient with me when they saw my oxygen tank or walker.  Without those devices, I have become simply annoying.  I am smiling on the inside because I am happy to not need assistance.  However I am aware of heavy sighs and eye rolls from others when I am slow.  Sometimes this hurts and causes me to feel inferior.  On other days, I let it roll off and I carry on.  Recently I had an encounter where a man put his hands at my waist and moved me to the side. This man’s lack of boundaries was so insulting.

I enter the store feeling okay. However this is a condition in which muscles are weakened rather than strengthened by use. After a few aisles of moving items from the shelf to cart, I begin dropping things. Repetitive motion is bad for this disease.  By the middle of the store, my double vision increases.  Stores use lighting for marketing.  This distorts my vision more.  Common items feel unusually heavy. IMG_7849 (2)When I can maneuver these items, I feel very proud. When I cannot, I have learned to ask for help. I am blessed with my helpful husband, family and friends.

As I wrap up my shopping trip, I choose the longest slowest line, so that I will not hold up the fast lane folks. I am pleased that we are living in the debit card era. This saves me from dealing with money with my weakened hand muscles.

I am aware of the sighs and the “get the lead out” mumblings when I am in the way of an impatient person.  I am more aware of how grateful I am to be out and about.  Thanks to treatment, I am doing so much more than I could do during the first years of my MG experience. I do not know how long this improvement will be here. This is known as the snowflake disease.  I know what it means to be thankful for one day at a time..one moment at a time.  I write these articles with other myasthenia gravis victims in mind. I like to share what I find helpful.  By sharing, we can be there for one another.

 

 

 

 

 

 

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NEW CANE (an aid for Ocular Myasthenia Gravis)

I shopped online for a cane to help me deal with the double vision and altered depth perception that I experience as a symptom of Myasthenia Gravis (MG). I was thrilled to find a metallic purple one. PURPLE CANE, PURPLE CANE! When told my husband about my find, he said “Didn’t Prince use that for the title of a song?”.  Now I cannot get the tune out of my head when I refer to the cane. But I will try, so that I can move on with this article.

Here is a reminder: The nickname for MG is Snowflake Disease. This is because symptoms vary from person to person. Symptoms can also change quickly within the same person. If you or the person that you care for has this disease, you may find yourself nodding with recognition of my experience. Perhaps your journey with MG is different than mine. My purpose in writing these articles is to help fellow snowflakes cope with challenges.

IMG_7755 (2)

The above photo shows what I experience as I approach a single step or curb.  I have been coping by tapping the back of my heel to the structure to determine where it is. One day I had the thought of how handy it would be to tap with a stick. Then I burst out laughing. They call that a cane! I was not inventing a new contraption. My neuro opthamologist absolutely agreed with the cane decision. He said, “The last thing you need is a fall”.

The medical term for double vision is diplopia. Diplopia and ptosis (drooping eyelids) are often the early signs of Myasthenia Gravis.  This was my situation for two years before my other muscles were effected.  I experience multiple vision. I see several images rather than simply double. Usually my multiple images are vertical (side by side). Sometimes they are horizontal (on top of each other). When this happens together my brain gets so jumbled. Our eyes are simply the camera lens. Vision happens in our brains. The jumbling causes anxiety. I have learned that daily meditation, mindfulness, and other relaxation habits can help ward off the anxiety caused by the visual disturbance. I need to do this on a regular basis, rather than wait for the anxiety to arrive.

My eye Doc is wise. He schedules his MG patients for late afternoons and early evenings. Double vision is worse after using one’s eyes for a while. MG vision problems are least apparent early in the day. May I suggest that patients find a neuro opthamologist if they have MG. This is a specialist with experience in treating this rare disease.

This impairment interferes with socialization. During a recent visit with friends, three people on a sofa suddenly became six people on a sofa. Rather than talking about my illness, I try to compensate. It becomes difficult to know where to look. I find myself feeling embarrassed and inferior. I am learning that when I do share my experience, I find that most people understand. Some do not, but that is about them and not about me.

I believe my new amazing purple cane will boost my confidence.  When I loose my depth perception, I will tap my beautiful purple stick, rather than turning back in terror and feeling embarrassed.

I am so fortunate that my double vision begins at four feet and further. I am able to write, use digital devices, read, and make art. I have recently started to have some close up diplopia. Closing my eyes for a while helps. Closing one eye or wearing a patch always helps. My Doc feels confident that he will be able to treat this with added prisms in my glasses if it progresses.

In the mean time, I am joyfully and gratefully bopping around with my purple cane. By the way, yes, I do have that Prince song amidst my music.