The Top 3 tasks I need help with because of myasthenia gravis
Caregiver support is sometimes necessary — and more important than pride
My hygiene sucks. All of it.
It’s better now, but that’s because I swallowed my pride and admitted to my husband (and caregiver), Justin, that I needed more help than I was asking for. He made it easier for me to admit this by asking, “Honey, do you need help with showering?” His question gave me the permission I was subconsciously seeking to admit that I needed his care, given my myasthenia gravis.
He knew the answer as soon as the first tear fell to my cheek. He knew my need was battling my pride and that I likely wouldn’t have asked for help on my own. I know how lucky I am to have a partner and caregiver who’s as attentive as he is.
Two of the three tasks I need the most help with involve personal hygiene. I’ve already mentioned showering, but within this task are multiple elements that I need help to complete. And then there’s another basic human task that requires support.
Washing my hair
We started with washing and conditioning my hair. My arms get fatigued during this task. Most days when I’d shower, I wouldn’t wash my hair because I physically couldn’t do it.
As we got into a rhythm of Justin helping me with this, I felt more comfortable asking if he could also condition my curly, frizzy mess. Slowly, over the course of six months, I went from shame to acceptance of his help.
Bathing
While we were spending time with hair hygiene, Justin noticed that my back was breaking out with acne. This led him to ask if I needed help with bathing, as well. I acknowledged that I wasn’t able to wash my back on my own, and sometimes I was unable to wash my legs. I hadn’t been able to shave my legs in years.
He now helps me with these tasks.
Admitting that we need help with certain daily activities can make us feel shame. But there’s no shame in wanting to take the best care of ourselves, however we can. If that means we need assistance, then damn it, that means we need assistance. And that’s OK.
Eating
The third task that I require the most help with is food preparation.
I experience bulbar symptoms, which can cause dysphagia, or difficulty swallowing. In addition, my left hand gets contractures that often lead to trouble cutting up, dishing, and serving my food.
Justin cuts my food into toddler-size bites to help reduce the amount of chewing required and, thus, prevent choking. If I’m experiencing a bulbar symptom flare and have a soft-food diet for dysphagia, he’ll prepare my food by blending it — or by making me an entirely separate meal from what he’s eating.
The Top 3
Washing my hair, washing myself, and eating: three pretty big tasks that a lot of people take for granted. It was hard to admit I needed help, and in the beginning it was even more difficult to accept that help without feeling like a burden. But let me tell you, feeling clean and not smelling stinky butt because it’s been a week since I was last able to shower? That feels better than feeling bad for needing the help.
Don’t let your pride get in the way of taking care of yourself to the best of your ability – even if that means asking for support.
Note: 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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Jonathan D AUTORE
I know how you are feeling. I am better now and in remission ... but for eight months not a single doctor was medically educated enough to diagnose ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS, despite my having EVERY SYMPTOM, except breathing issues. I was finally correctly diagnosed by a third floor nurse at the second hospital, who talked her doctors into a NEURO CONSULT, and THYMUS/ANTIBODIES TESTS.... my antibodies scores were over the moon .. extremely SERO POSITIVE.
You are LUCKY to have a wonderful supportive husband. I am a single guy, and most of my six other siblings, are scattered from Ohio to Texas ... Frisco to Charleston. Fortunately cell phones, notebooks, and emails have been invented since MA BELL died.
I know the eating/chewing issues. I had to use my left hand to close my jaw constantly to chew my food ... then I would have to put my food into fridge, till I could lie down and recover my jaw strength, and my spoon finger grip strength.
I am remission enough to see and drive to doctors and the store to pickup my meds. But I worry if I should ever need to find someone to drive me home. I keep reading about tests, and they say that they will probably sedated you, and you will recover from small sedation, but they will cancel the TEST, when you arrive ... if you don't have a possible driver to take you home. I keep saying that my house is only two miles and a hop on the bus at the corner home. NOPE !!! I say there is a taxi company that I have used before when undiagnosed. NOPE !!! Then in desperation I say ... well there is that UBER or whatever other service. AGAIN NOPE NOPE NOPE !!! "They might take ADVANTAGE of you." What is a guy to do ??? I believe our city has Para Transit Van also ... like my Aunt Janet used ... like METRO-MOBILITY in MInneapolis ... but that is probably another NOPE !!!
At least you have a terrific husband. My older neighborhood is being taken over by HOUSE FLIPPERS, who buy cheap, plant gravel yards, convert garages, to a new bedroom, then sell to realty companies, who rent houses to university students. So there are no neighbors left ... and you don't want to impose. So what is available ?
When the first of 5 hospitals could not diagnose my MG, the first hospital sent me by a late night ambulance to a second hospital in a nearby city, and billed CIGNA $1450 for that short ride.
Shawna Barnes
Thank you for your comment Jonathan. I am very lucky to have such a supportive spouse. I too come from a large family - I am the eldest of six. Many of my family members are not as supportive as my husband. If I didn't have him I would definitely be up sh*t creek without a paddle! I'm glad to read that you are in remission and hope that you continue to do well!
Bryant Cramer
I don't know if anyone else has this problem but when I get weak I have a problem urinating. It seems the muscles just don't want to push it out. I have had everything else checked out and it was fine. My neuro say's that is not a symptom of MG. I beg to differ.
Shawna Barnes
Thanks for your input Bryant. I do have difficulty with urination, but I've also been diagnosed with OAB (overactive bladder). Some days I have trouble with incontinence and others I have difficulty being able to fully empty my bladder. It's not something I'd ever considered bringing up to my neurologist because I have many other chronic health conditions. I wish I could be of more help. I do know that I've seen and heard this complaint in several of the support groups on social media so there very well could be a connection. Best of luck in getting it figured out!