Coping With Lupus and Memory Loss
I decided I would write about lupus and memory loss for this post. I was excited, because this is something that is near to my heart and one of my week-to-week challenges.
I was totally ready to share something important and perhaps, just perhaps, make a difference to someone going through the same feelings, wondering if they were losing their mind and if they were the only one.
Then, as if on cue, I forgot to write it.
You may laugh, but I am certain many of my fellow warriors can relate. My memory has been at its very worst lately. I can’t remember basic things and unless I have reminders written down all around me, I feel lost, frustrated, and at times, embarrassed.
I am a responsible, relatively intelligent person — a former reporter and newspaper editor. I used to have a mind like a steel trap. I remembered faces and stories and leads and deadlines. Heck, I remembered how to spell words rarely used and when it was appropriate to use a comma. We overuse them you know.
Well, I used to know, but now not so much.
The Things I Forget
With lupus affecting seemingly everything in my body and who I once was, I can look at instructions or a name or the correct way to spell a word, turn away from the page and it is gone. Vanished from my mind like I did not in fact just look it up.
I forget my PIN number to my bank card, my zip code, and most recently, even my own last name. Yes, I actually went up to the pharmacy counter last week to ask for my lupus medications, said my first name and then drew a blank.
My maiden named popped into my head, which makes no sense since it hasn’t been that for 30 years. I panicked. Then my married name from my first husband popped into my head and I was even more panicked, and to be honest, slightly disgusted.
Then my remarried name, which has been mine for nine years, finally came to me and though I am sure it was only 20 or 30 seconds that I was stuck, it was enough pause that the pharmacist was looking at me questioning if I was who I said I was. Embarrassing!
It is moments like that, or when I am mid-sentence and I can’t think of the words I need to say, that I really feel like lupus has robbed me of so much more than anyone knows. I mean, you can tell someone you are having memory issues and they say, “Oh I know, I forget things all the time lately.”
But they mean they forget to pick up their dry cleaning or forget to buy milk on the way home. I mean I will be driving and suddenly not remember where my turn signal is or where I am going or how to get there.
I have actually had moments of complete panic while driving when I suddenly realize nothing looks familiar. Eventually, minutes later, something I see jogs my memory and it comes back to me, but it is the most frightening feeling until it all returns.
The fact is, lupus “brain fog” can make an important event on my calendar completely vanish from my memory. I don’t mean believing it is scheduled on a different day, but vanished like it never existed. Much to my embarrassment, I have forgotten birthdays, doctor’s appointments and even a family member’s funeral.
I have been asked, “How could you forget this!?” and I don’t have a great answer. Lupus robs you of dignity as well as the person you once were. I find myself trying to explain what even I don’t fully understand.