How I maintain independence in my personal hygiene, despite MG
Asking for help with tasks like showering can benefit those living with MG
People tend to take certain abilities for granted, refusing help even if the need arises. Call it pride, embarrassment, stubbornness, or denial, but the result is the same: Some tasks may not get done if the person doesn’t request assistance.
That includes activities of personal hygiene, such as bathing or showering, brushing teeth, styling hair, applying makeup, or shaving. Most people assume they’ll never need help with these things — at least, not until they reach a more advanced age. Yet myasthenia gravis (MG) can take these abilities from us, even at an early stage of the disease.
Until recently, I’d often avoid bathing. I didn’t want to burden my husband, Justin, by asking for help during the day, so I’d wait until the evening to shower. But by the time evening rolled around, I was too tired to sit on my shower chair. So I wouldn’t shower. Days would go by, and I’d reassure myself that I wasn’t a nasty slob of a person because I was using wipes to clean up the necessary delicate areas.
On the days when I did shower, I wouldn’t wash my hair because my arms and hands were too weak and tired for the job. Many times, I’d just sit under the hot water and trick myself into believing it was rinsing away the filth well enough.
I’d go weeks without brushing my teeth because toothbrushes with a large oval or rectangular head would cause mouth weakness and my arms would be too heavy or tired to hold it. My hubby hasn’t had to help me with this task, though, as we’ve found ways to work around the issues.
In previous columns, I’ve mentioned how I never admitted to anyone that I needed help with showering and maintaining my hygiene until Justin asked me about it. I was depressed and angry that MG had taken my ability to perform these intimate tasks. And I was embarrassed to request assistance.
The importance of asking for help
But by asking for (and accepting) help, I finally had someone to talk to about my struggles. Justin encouraged me to discuss the issues with my care team, and they recommended an electric toothbrush with a small head that makes brushing my teeth on my own much easier.
My husband also helped me brainstorm ways that I could maintain independence with personal hygiene. He told me he didn’t care about my hairy legs, but if shaving them made me feel better, he’d help me to do it. I haven’t shaved my legs in over a year. I stopped caring what society thinks; plus, I’d rather expend my energy elsewhere.
While Justin sometimes helps me wash my hair, I still don’t like asking for assistance with both the washing and the conditioning. Call it stubbornness if you want. But that stubbornness led me to discover that while sitting on my shower chair, leaning forward with my elbows tucked at my side, I can reach my head and condition my hair on my own.
Showering still fatigues me, though. Because I recently switched from evening to morning showers, I now need three hours before I’m ready for the day. I wake up, take my medications, wait 20 minutes for them to start kicking in, and then I shower. If I think I’ll need help, I let my husband know so he can prepare.
I use the shower chair whether I feel I need it or not so that I can conserve my strength and energy. While sitting there, I remind myself that I’m not in a race to see how quickly I can finish my shower. I take my time and take a break between tasks.
Wash hair and face. Take a break. Apply conditioner. Take a break. Wash upper body. Take a break. Rinse conditioner out of my hair while washing lower body. Take a break.
After I’m done showering, I get dressed with my hair wrapped in a towel and take another break for at least 20 minutes. If I’m feeling up to it, I’ll then style my hair and apply makeup.
I’ve had a lot of trial and error to find a routine and work-rest cycle that work for me, but I was able to do so with the help of my husband and care team.
Remember, you can keep living your best life while managing myasthenia gravis. You might just have to get creative.
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.
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Comments
Suzanne
Thanks, Shawna -- I really needed to read this. Despite developing gMG in late 2009, I've recently come to terms with what that has meant for hygiene. Dealing with my hair (brushing, washing, drying) has probably taken the biggest hit. While I've created a routine to wash & dry my hair (tub soak with magnesium -- two birds with one stone; using a scalp massager / brush to more easily shampoo; and using a hair dryer stand to blow dry), it's still tedious and so energy-consumptive. I feel like cultivating strategies, acceptance, and compassion for ourselves is crucial during this process.
Laurie Eason
I developed an almost identical routine for showering and washing my hair. I also cut my hair short and with the new, dryer, gray/white hair that is coming in, styling is managable for nearly a week! An unexpected benefit of being 77 I guess! The shower chair and planning for a "rest" period after my shower and before dressing has helped me so much! Thanks for confirming I am on the right track! I do live alone so had to figure it out for myself.
Shawna Barnes
I'm so glad to read that you found a routine that works for YOU! Thank you for sharing, Laurie. Wishing you many more years of independent living! - Shawna
Connie
Not for sure if my husband has MG or ALS. Still waiting for another further test….. But we understand the situation when it comes to bathing, brushing teeth, etc. Yes, it is a slow process, but that’s ok. Where are we going or what do we have to do that’s more important than that. I help my husband get into an old step in shower. It was here in the house where I grew up in, where we live now, sure glad to have it. I set him on a shower chair, and tell him to relax in the nice warm shower water. I help wash his hair and then conditioner. He enjoys sitting there and relaxing. We are doing that twice a week because of his weakness . We had to deal with the COVID 2 months ago. But getting some stronger. . Do what you can do, step at a time and try to smile when you accomplish that step.🌺
Shawna Barnes
Thank you for sharing, Connie. It is definitely slow and steady, one step at a time, and on MY schedule/pace. There's no need to compete or keep up with the Jones', as they say. - Shawna
Linda C Jirka
I use Medline MSC095305 ReadyBath Unscented Body Cleansing Cloth, Standard Weight to bath between showers. ReadyBath bathing wipes are formulated to soothe skin and also eliminate odors and kill germs, and can be warmed to comfort sensitive skin. I can get clean in just a few minutes. Wash my hair in a sink later. No drying with a towel.
Shawna Barnes
Thank you for sharing, Linda! I have some cleansing cloths as well that I use when I need them. I recently cut my hair to assist with showering and hair washing. - Shawna
Ildiko Pocza
thank you for teling all these, so far i had the impression it is only me, who suffers of having a shower or taking a bath. i confess, that to have my hair washed, i climb in the bath, and for some it would be funny to see how i do it...