Another day of mostly sleep, so far. Over the last couple of days, I’ve been having a little trouble with my balance again. Nothing as bad as before, and it seems to be more physical balance than spatial orientation. Something really weird happened, though, for the first time ever.
I was lying in bed, on my left side with my right arm and leg luxuriously stretched out into the space normally occupied by my darling husband. Suddenly I felt a cat jump up onto the foot of the bed, walk along the edge for a bit, then jump off. Then I felt a cat jump up onto the bed close to my elbow, walk around my hand, up towards the pillow, then jump off.
Only thing is, the cats were closed out of the room. I stayed still and tried to observe the phenomenon. The feeling of something putting pressure on the mattress below my hand/foot was not accompanied by the pressure from above that you’d feel with something that was on top of the covers. The feeling of the pressure from above, as if something were on top of the covers, came right after, and wasn’t accompanied by the feeling of pressure on the mattress below. The “walking away” really did just feel like a cat walking up the side of the bed, from foot to head, then suddenly stopping.
The sensation continued, decreasing in frequency rather than intensity, then stopped. Weird.
I have spent the last two days sleeping intensely. Like, wake up, eat, sleep until lunch, go back to sleep, wake up for dinner, then back to bed. Two nights ago, I fell asleep sitting up with the TV going. People who know me will find this stunning, because my insomnia is world-famous. The only thing that’s keeping me from going back to bed right now is that I have to go out and get a prescription filled.
The weather doesn’t help, and adds a headache on top of all this. The collection of cerebrospinal fluid under the left side of my scalp had gone down to just one little saggy part at the base of my skull, and it was so nice to feel it lying flat near the crown of my head. Not anymore. Yesterday it was back to a giant balloon, and my neck was so swollen with it that it hurt. It’s down a little today.
I’ve also had a couple of incidents of stuttering and word loss. . .it all seems to go together.
Starting to realize, too, that I may have been having effects from the tumor for at least 6 years. Little things I dismissed as being caused by something else, things I didn’t notice because they progressed so slowly. It was probably one of the reasons I had so much trouble making that prom dress a few years ago – the spatial relations were already impaired, and each time I made a mistake, I absolutely could not figure out what I had done wrong. Not the kind of thing that happens under normal circumstances when you’ve been doing something for more than 40 years. Just now realized that’s probably why I found the idea of helping a friend with an SCA gown downright frightening. Once it got past the doing the math and making the paper pattern and going from 2D to 3D, there was an unconscious awareness that it just could not be done!
Yesterday I read an interesting article. None of it looked familiar at all, but when I went to the button to share it on facebook, it was greyed out and said “You and xxx people liked this.” No memory of reading it, no memory of sharing it, no matter how I racked my brains.
The difference is that this time I just shrugged it off. This kind of stuff is going to happen, and there’s nothing I can do about it, so I might as well just roll with it.
This was something noticeably, majorly different. I planned to take DD#2 shopping for clothes, and wanted to make sure that I remembered the ways in and out of this mall, since it’s not a regular trip.
I looked at the map. I understood it. I had the entire concept of where it was in space, which way I would have to turn to get in or out of the various exits, and what my alternate routes were. I don’t think I can fully express the disconnect that existed between where I was, and where everything else was relative to me before the surgery. I could look at a map that was set up in a simple grid, with the street signs on all sides of me completely visible, and still not know where I was and in which direction I should go to get where I wanted to be. It is a sensation that is so bizarre that it defies description. It is nothing at all like being lost – it’s more like not being in a place where the rules of physics even apply. Even a line from point A to point B is more like navigating an Escher landscape.
We got to the mall just fine. I didn’t remember where all the places were, but even when we entered a store through one door and exited through another, I knew where we were relative to where we were and where we wanted to go. I knew where the anchor stores were, relative to one another. When we took a staircase between levels and needed to go to a store on one level that didn’t exist on the other, I knew which way to turn at the end of the stairs.
This is such a simple thing to take for granted if you’ve never had to live without it.
Obviously, as time goes on, there will be more spacing between updates. Changes are not so dramatic. I still need to sleep a lot. I am getting fewer headaches, and they are less severe, but I get bouts of sharp pains in my head. The cerebrospinal fluid under my scalp increases and decreases, and the more of it there is in my scalp, the more there is in my neck.
I’m actually finding occasional episodes in which I’m able to retrieve a lost word on my own, searching my memories without outside assistance. I remembered that the Spanish word for “peas” is “guisantes” today, after mulling it over for about 18 hours or so. That’s actually a bigger thing than it sounds like. Kind of monumental, actually.
My neurosurgeon approved starting up again on Adderall. My psychiatrist and I agree that Cymbalta is addressing my depression well, but I’m experiencing my ADHD symptoms again now that there’s a little less impairment from the tumor. I’m wary of mistaking symptoms that are taking place during recovery as symptoms that can be pharmaceutically addressed. That’s what delayed diagnosis of the tumor for so long. When it comes right down to it, though, they’re almost identical to the problems I’ve had all my life, and I’m really not too keen on letting them call the shots.
No question, Adderall XR works well for me. We’re starting at a very small dose and titrating up. 5mg first thing in the morning, 5mg more three hours later. The improvements are obvious. Bit by bit, the brain chatter quiets down. I can look at a to-do list and actually do a few things. Without the meds, the to-do list becomes so large that it seems insurmountable, and nothing gets done. Without the meds, I haven’t got a firm enough grasp on the passage of time to be realistic about what I’m able to accomplish.
Still, though, a lot of things seem too intimidating or as too time-consuming to begin with my limited energy and concentration. I get that paralyzing gut feel looking at them or seeing them on the list. . .the idea that I would start them and leave them unfinished (to join the long list of other unfinished stuff) creates an emotion that is very close to fear.
Realistically, the solution would be to change my expectations, plan things in an organized fashion, do what I can, and ease up on myself. ADHD and realism do not happily co-exist. And whether it’s because of the slow pace of recovery or the low dose of Adderall, I find myself frequently staring at a fairly straightforward task, confounded about what step comes next. Disorientation still comes at me in fit and starts. Memory is unreliable. Physical exhaustion comes on with different amounts of activity every day.
On the days when it seems that having the surgery meant simply trading one set of impairments for another, I hide under the covers. Sometimes I need the sleep, sometimes I need a place to hide from outside stimuli. I know that I need to accept things as they are day by day, but the unpredictability of what each day will bring carries a certain level of trepidation that I can’t seem to overcome.