I find making adaptations necessary given my prognosis. Whether it is myasthenia gravis, lupus, ALS, diabetes, etc… they say if you don’t manage it, it will manage you. I’m learning how to manage it.
My dad, upon learning I have MG, sent me 4 books on the disease. I just finished reading 2 of them. Elizabethe read one of the other ones while I was reading these two. Comparing notes, they basically said the same thing – learn what works for you as far as a daily schedule, manage what you eat, get plenty of rest, don’t over do it, communicate with your doctor, etc.
Speaking of the latter – communicating with your doctor…
One of the last things he said to me was, “And, whatever you do, don’t lie to me.”
I wondered if he thought I was pulling his leg regarding one of my symptoms, but I knew I was being completely honest with him. There was one symptom, I thought I would find odd if I were him. It was water getting stuck in my throat. Not solid food, but plain water gets stuck. Then, when reading one of the books the author noted choking on thin liquids as being a symptom.
I’m starting to learn I should limit myself daily to one major task. A major task right now is anything requiring me to be on my feet exerting myself – mowing the lawn, doing a photo shoot, going to the stoor, attending a meeting, etc. If I try to do more, I pay for it during the night and the next morning… or longer.
Over doing it sneaks up on me. I can’t wait until I’m mid task and decide I can’t do any more. I’ll feel okay, but then I’ll stop for a bathroom break, and then it will hit me. When it hits, it hits HARD. This is what I have to learn is how far I can go so that doesn’t happen.
What It Is Like
What is it like having myasthenia gravis?
They say it is different for each person. It’s nickname is the snowflake disease. Every snowflake is different, so is every MG patient. Here is what I go through…
- My vision starts to “quiver”. It’s like my eyes are vibrating (is the best way to describe it). It creates a little blurriness in my vision.
- Twitching under my left eye,
- Flu-like aches and pains all over the body,
- Arms and legs always feel like I finished a big workout,
- Loss of control and strength of my fingers, arms, legs and feet,
- Strong spasms (muscles knot up in to lumps the size of a marble or as large as a golf ball – very painful),
- More coughing and sneezing,
- Brain Fog,
- Occasional aura migraine flashes,
- Difficulty sleeping (because of the pain and spasms),
- Problems swallowing water, milk, and most other non-carbonated liquids (the carbonation seems to help).
As a result, I’m worn out from the time I wake up, until the time I go to sleep. Exercise makes things worse (in fact, it causes muscle damage in people with MG). Relaxation and sleep are the most rejuvenating activities.
Comparing with Other MG Patients
I’ve joined a group of men with MG, and I’m reading some books written by people with MG. We all have one thing in common as far as our symptoms – fatigue. Fatigue and weakness are the biggest complaints. As a result, there is a common thread of longer-than normal sleeping and mid-day naps.
I’m going to have to start reducing the clutter and getting rid of things I don’t need, don’t use, and most of all, things I cannot use any more. With MG it doesn’t pay to have big aspirations to take on a big project. So, if they are things associated with big projects, I’m getting rid of them.
Life will have to be simpler from here on out.
I’m counting my blessing. MG has not affected my ability to type or play the piano. It has not impacted my ability to chew my food. It has not distorted my face. I have not gone cross-eyed.
In spite of the brain fog, I can type (write) (given quiet time). However, I’m doing less blogging because it is mentally exhausting and tiring. For now, I’m thankful when I have moments that I don’t feel out of it.
Picking up my 2 year old grandson today made me grateful I had the strength to pick him up. (He’s quite the chunk.) The other day, I couldn’t move a door that was simply leaning against a shelf, and a few days later, I couldn’t pick up the aluminum step ladder. So, I’m grateful for occasionally being able to hold my grandchildren.