Here we are, caregivers for others who have some form of dementia. We know lots about it. Many of us are involved intensely in our loved one’s life plus the activities of the Alzheimer Society or similar. We spend time learning more so we can be the best caregivers we can be at any moment, every single day.
But have we given that same dedicated attention to ourselves?
Have we done more than be sure we are showered and shaved so we can shower and shave our loved ones? Have we had time to think about the arthritis in our hands, knees and toes, while worrying about, and caring for, the aches and pains of our loved one’s eyes, stomach or feet? Have we taken time for our annual physical with our own doctor, in my case a different doctor than My Love’s doctor, as promptly as we get our loved one in to see his doctor for every little nuanced change that comes that we don’t know how to handle?
Besides being sure we get respite, time to breathe between emergencies, or between learning responses to our daily unexpected behaviors, have we taken care of our own aching back, our own swelling legs and feet? Have we taken time to be tested for whatever we are due for this year, maybe breast cancer or reoccurring skin diseases?
In my case, I have recently felt the re-emergence of myasthenia gravis, a rare, chronic, autoimmune, neuromuscular disorder that I have lived with, in varying degrees, since 1956. I am not sure many know this. I don’t talk about it often. But, today, during my weekly call, I was talking to a leader in a local health/wellness company who deals on a regular basis with seniors and keeping them healthy. When I mentioned I thought maybe myasthenia gravis was returning in the form of muscle weakness to my legs again, she let me know she was not familiar with MG.
HOW EXCITING! I had an opening to lead her to my new website, Myasthenia Gravis Insights, created expressly for the purpose of shining light on myasthenia gravis, beginning with June, Myasthenia Gravis Awareness Month. I was ecstatic…success…I could tell someone who had never heard of it. After all, that is my purpose!
That was number one who learned. Perhaps you will be number two and three. I know there are many who are still discovering. I know there are many more with muscle weakness still searching to see where their own symptoms might lead…hopefully, beginning in discussion with their health care provider.
But as part of my endeavor to tell caregivers to look after themselves, I must tell myself, as well.
I thought this disease went into remission in 1981. It might have, but maybe not 100%, I realized recently that I never had checked! It was a time of great turmoil and change in many aspects in my life, and so I thought…well you know now… I thought the changes were so great that my myasthenia had gone away! I was so excited, I never went to see a doctor for confirmation.
I totally, 100%, believed that when the bad in my life disappeared, so did my disease. I stopped taking my pills, waiting until I thought I needed another, which never seemed to jump out at me and say, “now.” I never have taken another. I just thought I was 100% better—either remission or not. It never occurred to me that remission could be 90% or 80%, or that I should see a doctor to confirm. I moved to a new location, stated a new life—not really taking time to recognize I was not 100%—until now!!! After recent years as a focused caregiver, with less of ‘my life’ on my plate, the importance of my own health, along with a nudge from reality, I had my major ‘aha’ moment. I knew I screwed up forty year ago. Now I must follow-up.
Looking in the rearview mirror now, what I believed to be true might not have been true. I have always had trouble walking since falling in the race where MG began sixty-five years ago. But the difference between the worst of times walking, even with medication, and the period when I thought I was in remission was so dramatically different that I was so sure it was gone.
In today’s world of caregiving, I now know I have not taken care of myself as well as I should have throughout the years. Most times life has been so good, I’ve been happy to make it to the next year, all the while never thinking to finish checking on MG. I just let it slip. Was I really that busy, really that over-involved in my life but not in myself? I’m finally making a correction when I see a neurologist in January of 2022 – forty-one years later. That date is coming quickly.
This post is a red flag for you, a caregiver or friend of a cargiver-STOP and look in your rearview mirror to see if you have left any health issues unfinished!
My job now, maybe it’s penance, beyond confirming the value of self-care for caregivers, is to introduce as many as possible to myasthenia gravis so that during the month of June, Myasthenia Awareness Month, they, and you, can tell as many as possible…just the name and symptoms. Send them to the site Myasthenia Gravis Insights. The site sells nothing. It diagnoses nothing. It treats nothing. It only gives very basic information to get searchers started on their journey, or to help with those who may have been searching for six years as I was. It only offers suggestions to see a doctor if any symptoms seem familiar.
I hope you will take the time in June….and maybe again later. THANK YOU. Judy Shone
Caregivers have issues, too. (c) 2021 Judith Allen Shone