 |
| Robin Rocky Mountain Stroke Survivor |
It is terrifying to realize that in one brief moment, my life completely changed. I didn’t realize how much until I was back home with my family and trying to live life again. I am writing this over a month after my discharge from the hospital, and I think I have discovered all my deficits and struggles, but I am not sure. In case you’re interested in a list (arranged somewhat chronologically by when I discovered the problem), here it is:
* Pain. Thankfully, the neck pain and headaches are continuing to get better. However, since I can’t take ibuprofen with warfarin, can’t turn my neck too far with the dissection, and can’t see a chiropractor, my options for coping with the remaining pain are limited. And with the financial ramifications of the strokes, I’m only seeing my massage therapist because I had happened to pay for several sessions in advance prior to the strokes. My husband says he’d make me go anyway, but I’d find it hard to justify to myself.
* Exhaustion. Fatigue is not a strong enough word. I am more tired than I’ve ever been in my life. And I was enormously pregnant on night float working 80 hours a week in up to 30 hour long shifts as a resident. I’m more tired now.
* Vertigo and ataxia. This one seems to have two parts. There was that original horrible vertigo with the stroke I didn’t recognize as a stroke until later. But that was fairly manageable once I got used to it. With the final stroke, it became disabling. If I move my eyes too fast, turn my head, have people moving around me (or cars when driving), have a blank wall in front of me, have to walk too much (which isn’t very much), get tired, try to do anything in the dark or in the snow, look at the water falling when I take a shower, ride in the car for more than about ten minutes (and even worse, ride in the car on curvy mountain roads…or even worse drive those curves), look at multiple objects at once (for example, the clutter on a table after a meal), or experience any number of other random triggers, I get “swimmy.” It’s not straight-out dizzy. I can feel it come on and have come to think of it as a sensation of shooting out of my body up and to the left and then spinning there while my body falls to the right. I’ve learned the motor control to not actually fall unless I’m in an odd position or really tired, but it’s exhausting to manage and makes me really queasy and ill.
* Lack of coordination of the right side of my body. At first, I thought that if I could manage finger-nose, I was fine. I quickly discovered that every single skill had to be relearned. Writing, typing, eating, cutting different foods at different angles, doing injections (again, had to relearn every angle), brushing my teeth, using scissors, doing buttons, washing my hands with bar soap, everything. Today I relearned how to insert candles into cupcakes. Whole new skill. And when I fatigue, I lose skills. If I write a list of twenty items, the first is in my usual hand writing and I gradually have to focus more until I can’t do it anymore and my handwriting is illegible. And I’m dependent on getting a visual on what I am doing…when I got home from the hospital, I tried to wash my hair and discovered that as soon as my hand went out of sight, it was flying without controls, or at least with faulty controls. I didn’t realize until last week when I started physical therapy that my right foot was affected as well. My PT Amy had me lift my foot and tap the top of a box repeatedly. I looked down at what I was doing and did fine with both right and left. Then she told me to do it without looking down. I happened to be standing in front of a mirror and asked if I could look in the mirror to do it. She said, “Sure,” in a voice that said she was interested to see what happened. I stood looking in the mirror, puzzling over the task. I simply could not do it. I stood rooted to the spot, unable to move my feet. “I thought that might happen,” she commented. Clearly she knows more about this than any of the doctors I saw in the hospital who didn’t seem to think I needed PT at all. When it’s dark or I’m tired, I have to be helped up and down steps and curbs like a feeble old lady.
* Name problems. I didn’t recognize this at first. I had to think an extra moment before saying anyone’s name. If I didn’t, the wrong name would pop out. My husband usually gets my son’s name. I call my son “Baby” and my daughter “Ellen” or “Lella” (neither of which is her name) or occasionally by my sister’s name. I can’t keep my two sisters straight. I realized this was a big problem was when I went back to work, to the practice I’d been at since I was a medical student over ten years ago, and I couldn’t remember anyone’s name. I’d hung on to the names of my boss and the other owner/doctor who sent me to the hospital. Everyone else was a blank. I gradually learned how to not try too hard but mentally hover over a name until it popped into my head. And like everything else, when I get tired, I flop again. At the end of my son’s birthday party (lots of moving people, a craft project, a walk, eating), I couldn’t remember my husband’s name.
* Grammar problems. This has almost completely resolved but for the first few weeks, with decreasing frequency, I had problems putting together sentences correctly. I’d leave out words such as “the” or “a” and completely scramble the order of a sentence and not be able to put it right. I did it two or three times last week that I noticed and I don’t think I have this week.
* Mood fluctuations. Hard to say if this is directly from the stroke or because stress leads to moodiness. I’m tearful or anxious or apathetic or fine. I’ve had a very strange peacefulness through most of this that I must either attribute to God’s grace or a stress reaction if it isn’t a direct result of the strokes. I manage to keep moving forward and do not feel as rocked by emotion as I would have expected.
I think that is a complete list, but I will come back and add anything I either forgot to include or discover later. Between all these various problems, I find daily life to be almost impossible. The exhaustion alone would be enough. But every area of difficulty compounds the others until I can’t do even simple tasks. For example, if I put a lot of focus into writing something, I have more trouble walking. If I go for a short walk with my family, I start mixing up their names. If there’s a lot of visual clutter making me swimmy, I have trouble feeding myself.
We’ve found that the best coping strategy is to conserve my energy for whatever tasks are most important and to break up my day into short chunks with rest periods in between and at least one nap. On days when I won’t get a midday nap, we try to let me sleep until at least nine or ten in the morning. We’ve worked to eliminate as many of the worst triggers as possible. In this way, I am able to lead a restricted but otherwise normal life. I’m amazed at how normal I can feel for the first few hours I’m awake if I stay within a few blocks of home and keep life simple.
What hasn’t changed? Well, I’m still a wife and mama. I still bicker with my husband over the same things and love him anyway. I still spend time with my children, though I leave most of their care (diaper/potty, clothes, preparing food, brushing teeth, etc) to my husband most of the time. I still love my children desperately and would do anything for them. I still wish I had more time for hobbies. I still have the same ideals. I still see patients, though in a very different practice setting and schedule. I’m still me.
See the original article:
in
No comments:
Post a Comment