One Patient's Positive Perspectives

Friday telecommute

Last week, there were no doctor appointments or Benlysta infusions scheduled for Friday, the day each week I telecommute and schedule in most of my appointments with doctors, lab work and other meetings. One of my best friends asked me to come over for lunch, since she was off work for the day.  This was the second time we had tried to get together in a couple of weeks, since the week before I had been sick all Memorial Day weekend, and forgot all about our plans to meet on Tuesday.  She of course, anticipated I would not remember after being sick for three days.

forbearance of sister friend

So, my dear friend overlooked my forgetfulness, because she well-understands the effects lupus has when it goes after my central nervous system in a flare. She is always so gracious when our friendship and plans take a back seat to the changing state of my health. That is why she remains one of the few very special people who have risen to the status of sister in my personal circle of friends.

ok & looking 4wrd 2 it… see u then

So, when Friday morning came, I woke up with a groggy brain and a grateful heart that there were no places I had to go that day. There was no thought on my mind except that for once, I had no appointments on my schedule.  The lack of appointments had been the original logic behind the plan to meet my friend at her house during my telecommuting day lunch break. She only lives about five minutes from my house, so it was really a workable plan. On Thursday, she texted my cell phone to check if we were still on, asking if I was I feeling okay?  My reply, typed with two thumbs on my cell phone at a stop light, “ok & looking 4wrd 2 it… see u then.”

fixed myself a sandwich

Well, as Friday morning progressed, I pulled out my laptop, logged on to my work computer network via the Internet and nifty VPN connection. Lunchtime came, and I went out to the kitchen and fixed myself a sandwich, and went back to work. It never entered my mind, until late the next day that I was supposed to call my friend and go to her house for my lunch hour on Friday.

On Saturday, I had a vague sense I might have forgotten something I was going to do, but couldn’t remember what it was. Was I going to practice music with a friend after finishing my work? Was that the day my other friend was planning to meet me? Was my other friend in town this weekend and we were going to have a piano lesson?  None of these had made it on to my digital calendar, so I gave up trying to remember what I had missed.

Did you forget about lunch?

On Sunday morning at church, my friend approached me with a hug, as she said, ” did you forget about our lunch on Friday?” I was suddenly seized with the realization I had stood up a best friend, again, twice in two weeks! With profuse personal anguish and painful honesty, all I could offer in explanation was that I had simply completely forgotten about her on Friday. “Well, when.11:00 a.m. came and went,” she explained, “I eventually figured that out.”

This was a difficult, awkward moment! Not meaning to, I had disappointed my dear friend and hurt her feelings. Of course, she tried to understand, but still, the lack of being important enough to me for me to remember our plans, for a second time, had to have some sting to it.  Not many friendships could weather this type of challenge, but this one has seemed to endure many of these memory lapses.  I thank God for a handful of friends and family like this!

Arrrgh!

This, the unpredictable loss of important short-term memories, priorities and plans, is one of the most challenging adventures I must face due to lupus, and its frustrating impacts from attack on my central nervous system.  If I could only always remember not to forget, I would!  In the eloquent words of the Charles Shultz cartoon character, Snoopy the dog, “Arrrgh!.”

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Comments on: "Lupus and forgetting the unforgettable" (3)

  1. wwfd301 said:

    Sooooo frustrating, isn’t it??? I have not been able to string more than 10 words together all week without forgetting what I was going to say. I couldn’t remember the word “pork” the other day. And unless I have it written in my PAPER calendar, I won’t remember it no matter what. I don’t use a digital calendar or my phone because…I forget to put the stuff in there!!! I am so sorry that you felt you let your friend down. I am sure she was disappointed but she sounds like a very understanding person!!

  2. complicatedfabulous said:

    That is a good friend. I know what this is like all too well. If I don’t write it down, it’s not happening. Everyday I know I have to look at a list to tell me what to do. I am deathly afraid I’m going to leave my daughter at school one day.

  3. I only had time to read the part about ‘no doctors appointments and no Bennilysta’. Those weeks are RARE, so when I have them, I sort of don’t know what to do with myself. I try to keep active with my blog and an online course I’m taking and keep a + attitude, but it’s hard when it seems like the only time I leave my house is for a PT appt, a doc appt, a blood draw or other test of sorts!

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