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Monday, May 24, 2010

I Have Cotton In My Lime Jell-O

I have good days, and bad days.

Friday, and today, Monday, have been bad days. Really bad days. Saturday and Sunday were good days. Really good days. Pleasant! Highly functional. Friday and Monday - Barely functional. I have no idea why. The best way to describe it is that I had cotton clogging up my Lime Jell-O. I know it is a lousy analogy, but it is the best I can do. It feels like my head is stuffed with cotton, and I just know it came from those frakkin trees.

Sometimes, like on Friday, I can tell right away it is going to be a bad day. Confused! As I was making coffee, I had trouble getting all the steps in sequence. This has happened before. I managed to make the coffee as always, but it was not a smooth process. I had to stop, and think, and go through it slowly. Making coffee is about as simple as it gets, so if I have any trouble at all I know it is going to be an uphill battle. The coffee came out just fine.

Friday is mostly a blur. I did go shopping, and that was OK. I made a list, got what I needed, and got home. No problem. It was only about 5 items! The focus of doing some shopping probably helped. The rest of the day can best be described as agitated. I tried to watch some TV, but could not get interested. I found myself pacing, or more precisely wandering, around the house. I do not normally pace. I was agitated and restless all day. I did not want anything to eat. Nothing appealed to me. I accomplished almost nothing. In the evening a great friend, more like family, came to visit. That was comforting. That made me feel more grounded and secure. That helped, but all through the visit it took all my focus and concentration. We went out for dinner, and that was stressful, but manageable. Overall the whole day exhausted me.

The weekend was very low stress, in safe and comfortable surroundings, and among friends. I had a very good and productive 2 days. After my bad day Friday the weekend was a welcome change.

Today, Monday, was less confused than Friday, but more stressful, emotional, and agitated. I have a whole list of things I need to get done. Some are easy, and some are not so easy. I burned through a few of the easy ones before noon. I was on a roll. Easy for me has nothing to do with the normal definition of easy. Sometimes my difficult would be easy for most. Spending an hour on the phone with DTV to straighten out a billing error was easy. Filling out a form is very difficult for me. It has never been pleasant, but now I find it is extremely difficult. Especially when it deals with an emotional component like my disability, insurance, work, and my future. It is stressful because the stakes are high, and mistakes could be devastating. I was feeling the pressure. I was feeling the frustration. I have learned that frustration is a big issue for me.

After a very emotional start, I finally got focused on filling out the insurance form with the timely support of a friend. This single 3 page form would have taken me about 10 minutes in the past. Not so any more. Two-and-a-half hours later I was stumped by a witness requirement on a signature. All I needed was a witness to my signature. I wanted to complete it today, and I was the only one around. I was frustrated. I do not deal well with frustration. I simply did not know what to do next. I eventually figured it out. I had just finally come up with an easy solution, and was trying to get myself motivated to act on it, when the phone rang. Frak!

I was furious! I lashed out!  My reaction to the interruption of the phone call was totally out of proportion. It completely derailed me from concentrating on the form I was filling out. It just blew me away. I was angry! I usually turn my phone off when I need to concentrate on something, but I did not expect anyone would be calling at that time of day, demanding my attention when I needed it all for something else. Maybe it is a task switching problem, maybe emotional, maybe behavioral, probably all 3, but as soon as I answered the frakkin phone, I knew I was not going to be able to get back to that form today. It had taken me almost a week to get it started. It had taken everything I had to start it, and keep at it. It was a long and arduous process, but I was finally doing really well. I would do some, then look up some medical information and dates, or addresses, take a break, and then do some more. It was working. I was getting it done. The phone call broke that rhythm.

Writing something for this blog was on my list of things to do today. At least I can cross something off. Yay! Sometimes it is the little things.

Tomorrow is another day. It will be better.

I think I will turn off my phone tomorrow - at least until the cotton blows away.


  1. Maybe some lists in the kitchen, like steps for making coffee, etc. to help on the bad days. Put it on the door of the cabinet where you keep the coffee, either inside or out. Same with other "simple" activities where you find yourself having problems on bad days. On good days you can ignore it. But it's there when you need it.

  2. Thank you, Matilda. This is very thoughtful. I think I need to explain a little better what I mean by having trouble making coffee because it relates to anything where there is a sequence of steps. Sequencing is an Executive Function. Working memory may even be playing a part.

    Making notes and even labeling things is a classic recommendation for people suffering from the memory loss associated with Alzheimer's. I even saw it in a movie. For me I don't think it would help much at this point with my bvFTD. Eventually, I may need to.

    I know and remember how to make coffee. Supposedly memory is not affected as much in FTD. I have a system for making coffee, and do it in the same order because that is the way it works best for me when I am half asleep. I empty the old coffee, rinse the pot, start filling it with water, empty the old grounds, rinse the filter, grind the beans, put the fresh coffee in the filter, and dump in the water. Sometimes I even remember to turn the coffeemaker on!

    When I say I have difficulties it is something like when I go to put the fresh coffee in the filter I find I have not yet completed the step of emptying out the old grounds. Or I am ready to turn it on, and have not added the water. Though a list of the steps in order might help, I would only occasionally need it, so would never look at it. When I do things out of sequence, it is usually pretty obvious how to fix it.

    Thank you again for the thoughtful comments.

  3. As i have told you in the past... LIGHT THAT COTTON ON FIRE!!

  4. How are you now? I have enjoyed finding your blog, and worry you've progressed now too much to write. That breaks my heart, my dad is in the same position you're in and my mom and sister are moving him into a Home soon. Good luck, I fear I will be in a similar place in 20 years, as this hit my dad in his 50s'.

    Be well, and hope you are being taken care of and are content and comfortable.