Sometimes it is just funny and I have to laugh when the brain isn't functioning properly; like when I reach for the tooth paste tube instead of the hand soap dispenser when I go to wash my hands, but when I need to be functional and the brain isn't working properly, it takes everything I have to concentrate and keep on task. I have found that running an inner dialogue sometimes helps to stay focused when I am doing something and recognize that cognitive function can't be trusted. It takes so long to do the simplest things sometimes and if it becomes obvious that it is just too messed up to be safe, what can be easy at times, needs to be rescheduled for when the brain is working better. So far I am aware of when cognition is not up to par so I can make that choice, but am scared that there may come a time when I might not recognize the dysfunction to be safe.

When I know that cognition is iffy, I start up an inner dialogue to remind me to do stuff while I'm doing what otherwise occurs habitually and without too much conscious thought. For example, a recent trip to get groceries went like this.

Dialogue on:
"Check before locking the door of the house that you haven't left the keys in the house." Then moving to the truck and discovering that I've tried to unlock the truck with the wrong key,
"Wrong key, this is the key to the office...the other black one is the key to the truck." I got the truck door open and got Willy, the dog settled, then got in myself and closed the door. "Do up your seat belt... Oh crumb...you forgot your wallet."

This then required getting out of the truck and going back in the house to get the wallet, repeating the exit of the house and entry of the truck procedure, including reloading Willy the dog who had decided that he needed to bring his ball and had gone into the yard to get it. Once we were both in the truck again and I'd buckled up, I put the truck in reverse and started to back out. As I looked in the rear view mirror and saw the approaching driveway gate, I slammed on the brakes.

"Oh, crumb...forgot to open the gate again! Just about hit it that time."
Change gears, go forward, park, get out again, trudge to the gate, open it, trudge back to the truck, get in, put seat belt on, then back out. I took a deep breath as I got us moving in a forward direction.

More dialogue: "Watch the intersection...register what the traffic lights are doing, signal, and check again for cars and pedestrians, turn right."
As I made the turn, my mind wandered to grocery shopping and then I got this little tid- bit of information.
"You forgot the Go-Green shopping bags and your shopping list." Then immediately following that thought, "Pay attention, you are driving."

With a stronger focus on driving established, I decided that I was too tired mentally and physically to go back for the bags after which my mind wandered to remembering what was on the shopping list. "Now what was on that list? Vegetables & fruit, what kind...?" I was in my truck and driving physically, but mentally I was wandering through the grocery store. I can't recall what was going on around my vehicle during that period of time that I was driving and thinking about groceries if you paid me. Then yet another reminder to focus broke into the mental grocery store tour, "Hey, pay attention, you are driving!"

By then there was the recognition that although I was only one block from home, I was having way too much trouble concentrating on driving, never mind completing a grocery run. I pulled into a church parking lot before the next corner, parked the truck, rested a bit and give Willy the news, "Come on Willy, we're going for a walk."

Then I went through another dialogue to leave the truck and get home on foot. "Get the leash for Willy and your wallet, clip the keys to your belt loop and then double check everything before locking the truck."
I started to walk away but Willy sat down and looked back at the truck.
"Forgot his ball...rats!"

Willy knows the drill by now and this short walk home means we'll stop for a ball play in the park behind the church. Feeling pretty exhausted by then, we went back the few steps to the truck and I noticed that my legs were doing the heavy like concrete thing. Willy jumped into the truck and got his ball while I leaned on the open door and then went through the mind dialogue to lock everything back up again. We slowly made our way to the park and I let Willy off the leash. As he set the ball at my feet, I realized that the ball 'chuck-it' was at home. I'd forgotten to get it when he had gone back for his ball. We played a feeble game of fetch as my bare handed ball throwing ability is not the greatest. Willy didn't mind...he just mouths the ball more at times like those. The open space of the park and playing with Willy gave my mind a rest and after 15 minutes, we started to walk the half block home.

A sudden rush of tingling went from my right hip to my foot and the knee started to feel like I'd sprained it. How can one have spasticity, numbness, tingling and pain all at the same time?
"The nervous system is checking in," I tell myself.
A few steps from home and I needed to pee right now.
"The bladder is checking in."
I tried to limp faster but felt like I was walking in mud and the knee had stopped straightening since sitting at the park. I stopped walking and stood there commanding the bladder to stop contracting while consciously trying to relax everything, then gingerly and methodically continued walking so as not to agitate the bladder further.

As I reached the door of the house, and fumbled with the keys to unlock it, the bladder rather forcefully checked in again.
"Willy, get out of the way!"
He was standing in the open doorway with the ball in his mouth. I reached down and lost my balance enough to bang my head on the door jam as I took it from him. With it tossed behind me and Willy happily going after it, I hastily headed through the door and banged my elbow on the door jam for the umpteenth time. Then I whacked the same elbow again when I stepped through the doorway to the bathroom. Geeze, when will I remember to hang on to a door jam before stepping through it?
"Made it," I congratulated myself as I sat down and the bladder trickled out a teaspoon of urine. I had to laugh.

These sorts of rougher days and events have been happening more and more frequently but there are still some quite functional days too and I take full advantage of those even if I am tired. It has become a bit of a balancing act to get things done and not to get too tired but I live alone and still go to work although my hours have been reduced. The shopping, banking, yard work, food prep etc, also need to be taken care of although keeping a running list and prioritizing those has helped. Man, I have lists at home, in my wallet and the office; and sticky notes everywhere now.

Sometimes getting things done ends up being a mess and sometimes, comparatively speaking, it is a breeze. I just don't know until I try because until I do, projecting on how things will go doesn't necessarily mean that it will be like that. Sometimes I think that it won't go well, and it turns out to be easy. Other times I think that the inner dialogue will work to keep me on task and maybe it does or maybe it doesn't. Then there are times that I think that an undertaking will go well but it needs to be abandoned, even with the inner dialogue running; like the grocery run described.

When cognition is back on track and the body is game for a previously abandoned task or trip, we head out, get the truck, do the shopping or whatever the task was and are usually home within an hour. The time it takes to get mind and body functional enough varies but usually within a day I can pull it off if it is urgent. If it can wait, it does.

I don't think that people without these sorts of disabilities and challenges realize the effort and accommodations required for what most consider simple tasks; and I really feel for people who have more disabilities than I do. It must be so much harder and more draining to get things done and accept that some things require assistance or won't get done at all.

Spasm, stiffness and pain are problematic and even debilitating at times but thankfully my arms, hands and legs do work, albeit with variable levels of coordination and sensory perception. So when I get begin to get frustrated, I think about what it must be like for those who do not have the function that I do...and try not to think negatively about the potential of finding out for myself what that is like. The more recent increases in dysfunction have required that I do make some plans in that regard just the same and working through that process reduces the stress of worrying about it while putting a more positive aspect on a difficult situation.

So far the greatest challenge for me has been figuring out how to work within and/or around increasing symptoms, and the concentration/cognitive impairment sometimes makes that more difficult. For example, writing this post has taken place over the past two days but has helped me to be more patient and comfortable with the situation as it is and in using supportive features in Word documents.

Additionally there are some really helpful suggestions and ideas in the posts on this site and I am slowly going through them.
A BIG Thank you to all of you for your experiences, reflections and suggestions.

Erika