 |
| Robin Rocky Mountain Stroke Survivor |
After my strokes when I was trying to find out what to expect, I found lots of people writing in the immediate aftermath but the information about what happened long term was less available. I wanted to believe it was because everything was fine but I figured it was just that people lost interest in writing about it. But I promised myself I would keep updating for those recent survivors looking for stories and information. So here’s an update. (For my long term readers, go to the bottom for a fatigue scale chart…I hope some of you may find it as useful as I have!)
Once you’ve lived the same way for almost two years, it feels pretty normal. You get into a routine and pattern…just like any other life change whether it’s a change in jobs, having kids, getting married, etc. It takes a change in routine sometimes to notice the difference.
Today the kids and I met friends for a walk around a local living history museum. I use the stroller as a walker. My daughter is two and a half so it won’t be long until I have to either use a real walker or stop using it altogether. I don’t really need it most of the time, but it helps me to not trip and fall or drag my foot. It also gives me a better idea of what the ground is doing because I lack proprioception (the sense of where you are in space). I walked on a sidewalk, on a boardwalk, on uneven ground, through a historic house, and through a corner of a garden. I sat for quite awhile right in the middle of it all.
By the time we were headed back to the cars, the world seemed to be bobbing gently up and down. My friend must’ve noticed something because she started checking in with me. While we strapped in, I was irritable with the kids and on the verge of tears from fatigue. I drove home via a quiet side street I know well and made the kids maintain absolute silence so I could focus (by yelling at them if they spoke, unfortunately). By the time I got home, the spinning was just starting. My right leg dragged and I had a panic attack about falling down the stairs. My husband helped me into the house and straight to bed where I fell asleep immediately and slept heavily all afternoon.
And that is the progress I’ve made in almost two years. I can take my kids on a normal sort of activity and spend time with friends (major plus!) but I’m completely wiped out and miserable and end up losing the rest of the day (major minus). Most of the time I have my life set up around how easily I fatigue so that I can function through the entire day. Sometimes I break out and do something “normal” and face the consequences.
Most people would never guess my limitations because I have set up my life around avoiding them. I only park the car where I can easily get out again without whipping my head back and forth; I don’t drive on a busy freeway. I never bike further than I know I’m able to get back from (six blocks away if my husband is available to help me lift my leg to get off the bike at the end of it; four blocks away if I’m going to have to manage alone). We don’t travel at all; even an hour long car ride leaves me too exhausted to function. I spend a lot of time sitting; I used to sit rarely. I don’t try to step over things, I walk around. I don’t reach too high, especially to the side, and I don’t try to reach underneath things unless I’m sitting flat on my bottom. My close friends and family are all used to me flailing my hand for help if I step too close to the edge of a sidewalk and can’t get my foot back up. I can’t walk backwards so sometimes I have to just turn around even when it looks a little funny. I have breaks scheduled in to my work day to lie down and close my eyes for at least twenty minutes if I have to work more than 2-3 hours. I have to drink water and eat regularly because the slightest dip in my blood sugar or slightest dehydration completely lays me out. I still mix up everyone’s names (including my husband’s and kids’) when I get tired. I can’t go to any Christmas lights events or places with crowds without an escort who knows me and my needs very well (my husband or sister are about it).
I finally figured out a way to communicate my symptoms to other people. Just like there are pain scales for people to describe their pain to others, I’ve made a fatigue scale. It rates my fatigue symptoms in the categories I experiences such as sleepiness, arm sensation and control, gait, dizziness, emotions, and overstimulation. Before I wrote this up, it felt like I was always trying to explain how serious my fatigue was, even to my husband whom I felt should understand: “No, I’m really, really feeling crappy right now. This is bad. We need to figure out what to do about it right now.” It was incredibly frustrating! I could tell that therapists working with my husband and kids thought I was being a little histrionic. And it seemed as if I had to become truly hysterical before anyone took me seriously. I look okay on the outside until it gets really, really bad. Making this chart has changed that. Suddenly everyone who reads it takes me seriously. My husband comments, “It looks like you’re getting to a five, what do you need me to do?” That is balm to my strokey soul.
My Fatigue Scale
 |
| Click on this image to get a larger version that you can magnify to read in detail. |
What has helped you in your recovery? Have you found something that helps other people understand better?
See the original article:
in
No comments:
Post a Comment