Do you, or someone else DEFINE every stage of your life now as BS (Before Stroke – fits perfectly, huh?) or AS (After stroke)? Example: “Oh, BS we use to hike and do all types of outdoor stuff!” Or, “AS she doesn’t like that anymore!”?
I am finding that as time goes by, these “Defining Moments” happen less and less, or maybe I’m ignoring the outside comments? I try hard not to define my life by BS/AS, but it can be hard. Especially when it comes to not being able (yet) to things you used to do well with family and friends.
One thing struck me the other day: We had a 2 year anniversary sale at the the White Dove Thrift Shoppe where I work. I realized later that day, that not once did I think about it in terms of my stroke. I used to. I would always associate the store with my stroke in terms of progress.
Now, the store is an entire separate entity. I find my stroke is not an issue anymore (most of the time). In fact, the other day, one of my co-workers was telling a new volunteer about my stroke. I found it felt odd. Like they were talking about someone else.
That night I realized that as I progress, my world of BS & AS are widening. I can talk about my stroke. I can laugh when I have “one of those days or moments”. But I am not defining every moment, every activity with BS or AS!
Tonight, as on many occasions, I was “visited” by the “Spasticity Fairy”! Otherwise known as the Pain of No Reason”!
Okay, it’s been just over three years now since my stroke. I know how lucky I am to have survived, and how lucky I am to have progressed so much. My days are getting easier, my “brain fuzziness” moments are getting farther and fewer between.
But there are things that negatively affect my “always” stroke symptoms! These things will make me “lose it”, or as my husband says, “Hit your wall!”
My list of things that can make me “Hit my wall”:
- Large Loud Crowds – Way too much stimulation!
- Long conversations – Having to listen and try to participate in a long conversation will usually have me “loosing it” because I lose focus.
- Lack of Sleep – Nuff Said!
- Alcohol – Wine has become a very weird thing for me. Sometimes a couple or more glasses, no problem. But more and more, I will be fine, and WHAM, half a glass later and I’ve “hit my wall” BIG TIME! I find that my right side, especially my arm and leg will spasm and tighten up for about a good 15-20 minutes and hurt like hell!
So I’m curious to find out what will make you “hit your wall”?
Yesterday was a BUSY day for me & my family. Up early to vote. Then on to my final (hopefully) driver’s training class. The plan was that if I passed, we would then go to pick up my new to me, little white Rav4. Well………………………..
I am thrilled to report that yesterday, November 4, 2014, I passed my driver’s adaptive driving course and received the okay to have my “new to me” little Rav4 equipped with hand controls so I CAN DRIVE AGAIN!!!!!
So the rest of the day was filled with family juggling picking up the Rav4 (no hand controls yet, so I couldn’t drive), getting it registered and plated. Then we hit up the adaptive driving place where they install the controls.
Everything all done! Now, I just have to wait until Friday the 14th of November to pick up my car for that final “Okay drive” with my instructor!
I’ve started going to the gym with my husband recently. I workout out on the treadmill and recumbent bike. The first day back, I tried the machines, which I used to love, but now I feel too “awkward” to use. I find I can’t lift my damned right foot/leg very gracefully so I can get on the machines properly. I worry about tripping, or toppling over while trying to get on the darned thing.
So this morning, I decided to look on the web to find info on how best to start an exercise program after stroke, and independent of physical therapy.
Know what I found out? It appears no one knows what the hell to tell anyone!!! I’m reading statements that say, “It is impossible to devise a single exercise program”, or “only exercise to your level of competency!”. And my favorite, “Only do what you are able!”
After reading many articles on getting back into exercising after a stroke, I’ve learned one very important thing: The medical community has no idea what to tell us about how we should exercise, how much, how long, or just plain “how” to exercise.
So, I’m coming up with my own philosophy on getting back into exercising after your stroke: If you’re nervous, have someone with you. If it physically hurts, don’t do it. And above all, at least try it to see if you can do it……..You may surprise yourself!
Tonight my husband and I had a very heated “discussion”.
“About what”, you are asking. I’ll tell you. It was about me asserting my independence from my stroke.
He was ready to go to bed and I wanted to go swimming. So I will now break down the two opposing sides, his and mine.
HIS: “You know that they say no one should go swimming alone. Plus you’ve fallen outside after I’ve gone to bed, and I can’t hear you calling me! You need to come to bed when I do. Don’t put yourself in a situation that could be dangerous!”
ME: I have been swimming in the pool four days/wk with no one home. How do you think I’ve strengthened my right leg? I understand you’re concerned, but I have to do this.”
HIS: “What if no one hears you? What if I’m not around? You are just being stupid. Do what you want!”
ME: “I’ve been doing this for weeks, alone. Yes, it may be stupid, but I’ve decided that I will not stop doing things because I’m alone and afraid! If something happens to you, I will be alone. I will have to do the best I can. But my best won’t be there if I’m afraid to try!”
HIM: “I understand. I love you and just don’t want to see you get hurt!”
ME: “I know. But I can’t live life scared!”
*Now I broke this down to the grass roots of the “discussion” for editings sake. But the basics of the conversation is here. The lesson for stroke survivors and their caregivers is this: Please allow stroke survivors to make that decision they are adamant about. If you feel you need to “keep watch”, fine. But know we will be pissed off. We will only progress if we are allowed to make mistakes!”
I tell myself daily that I have come a long way since my stroke almost 2 1/2 years ago. I also tell myself that it could have been A LOT worse.
Still, when I have those “off” days, it’s tough to deal with. Since they aren’t as frequent as they used to be, they seem harder to deal with when they do occur. Still, I try to stay positive to my continued progress.
Me on an “On Day”:
Me on an “Off Day”:
Got up early this morning. Anyone who knows me, knows I am NOT a morning person, so this, for me, is unusual. Feeling kinda out of it so I decided since I was up, I would go for a trike ride. Gotta get out early in Arizona this time of year as it heats up fast.
Rode 2.17 miles. Not a long ride, but enough to break a sweat and feel like I did something positive to start my day.