Yesterday, Paul and I went on a fishing/running date. We have a spot we like to go on Sheepford Road along the Yellow Breeches. After we park along the road, he goes back a short trail to find a fishing spot and I run out and backs or circles through nearby neighborhoods. I don't like to be too far from him because he has seizures. I want to be able to run back to him very quickly and be there if he needs me.
We have a protocol. He wears something called a Smartwatch that is linked to his cell phone. If he starts to feel a seizure coming, he can click a button on his watch that automatically text messages me "Emergency." A few seconds later, it texts me his location (in case I don't know his location). Then his phone automatically calls me. If he is just having a partial seizure, he is able to talk to me and tell me what's going on. If it would turn into a grand mal seizure, then obviously I would hear that happening over the phone and know to call 911.
This is not just our protocol when we are on a fishing/running date. This is our protocol all the time. Ever since last year, when he was playing disc golf alone and had a seizure and landed in the hospital for four days (he tried calling me but I didn't answer the phone) we have operated like this. I always have my phone on me. If I get a text or a phone call, I have to look and see who it is, in case it is Paul. If I am going to be somewhere where I simply cannot answer my phone (example, when I got an MRI in June), he puts someone else's phone number in his watch so that if he hits the button his phone contacts them.
The whole situation has given me extreme anxiety. Especially at work. There are days at work where I feel like I simply can't function at all if I text him and he doesn't text me back right away. My stomach gets all tied up in knots and I can't even make small talk with the students. It sucks. Things got better toward the end of the school year, but I would still feel helpless and worry while I was at work and he was at home.
In the summer, it is a lot better because we are usually together all the time. Luckily, we love doing things together, and even if he is home alone and I go run errands, I know I could be home in a matter of minutes. It's not like I'm stuck twenty minutes away at work or something.
Does he ever push the "Emergency" button for me? Of course. All the time. He can go several days without a partial seizure and then he'll have one three days in a row. Luckily, his partials have not turned into grand mals for almost a year. He used to have about one grand mal a month. Now it has been almost a year since he has had one! That is wonderful.
I sort of went off on a tangent, but I wanted to give you some background info on Paul's health and how we make sure he is safe because it relates to the rest of my story. Back to the fishing/running date...
So I was thinking about doing eight miles. The plan was to do one mile out and back on the road. That way I would only ever be one mile away from Paul. I could do the out and back four times and get my mileage in.
It was hot and hilly. Well, the "out" was basically all uphill. The "back" was downhill. I was going slow and pacing myself so that I could try to get in all eight miles. I had a good podcast to listen to so it was all good. Except when I saw a dead snake on the road. I always see a freaking dead snake on that road and it scares the crap out of me- even if it is completely flattened and there are bugs flying around it. That's how scared I am of snakes.
I ran out. Then I ran back. Then I ran out again. Precisely when I was turning around to go back, my phone dinged with a text message. Please don't be Paul.
It was. It said "Emergency." Ugh crap. I am a mile away! I felt helpless. I started sprinting back to the car. I got the second text with the location but I ignored it because I knew the location. I waited for the phone call, but it didn't come. Maybe he doesn't get good reception along the creek. I called him but it went right to voicemail. Shit I probably called him right when his phone finally decided to call me.
All the while I was still running as fast as I could. I was doing a 6:05 minute mile. My lungs were burning. Legs were fine, but I felt like my chest was going to explode. That was the fastest I have ran in like, oh, almost a year. I called him back and this time he answered. "I'm having one," he said. "I'm coming Paul, I'm like 5 minutes away," I told him. "Okay, I'm down the trail pretty far," he said and hung up.
So the fear is that his partial seizure was going to turn into a grand mal. That is why I wanted to be there- in case he had a grand mal and I felt like he needed to go to the hospital. (He doesn't always go the the hospital for a grand mal. It just depends on whether he comes out of it in a timely manner or not.)
I kept running as fast as I could. It was horrible. Why did I run so far away??? A mile doesn't seem long until there is an emergency and you're not where you want to be. I tried to run faster but the sun was scorching and I was seriously going as fast as I could go. I knew that most likely I would probably get to Paul and he'd be sitting on his fishing chair chilling out, and everything would be fine.
I finally could see my car in the distance. I picked up speed and then turned down the trail along the creek. I didn't even care if I saw any snakes! He wasn't at his usual fishing spot so I had to run a little farther. As soon as I could see Paul on his chair I knew he was okay.
"I'm here baber," I said.
"I'm fine, just had a partial and trying to chill out," he said calmly.
I stopped running and realized that was a bad idea, so I power walked back and forth to calm my tummy down and talked to Paul to make sure he was okay. He apologized for making me sprint back and that he could have called me when it was over to let me know he was okay. I said no, he needed to chill out and not worry about his phone and talking. It was my pleasure to sprint back and take care of him if he needed me.
I was so relieved he was okay! After that, I needed to do a slow cool down, so I did almost another two miles on the road, but I only went a quarter mile out and a quarter mile back this time! I was not risking being 1.19 miles away again!
When I was done running I walked back to Paul and did a lot of stretching while he fished. Then I iced my muscles in the Yellow Breeches Creek and ate a turkey sandwich.
Paul is awesome. You would think after that he would give up and want to go home. But no. He just relaxes until he feels better and then goes about his day. He fished for another 3 hours after his partial seizure and even walked out to the middle of the creek to do some casting. (I was right there the whole time!)
So even though about 7 minutes of our fishing/running date was really scary, we were out there for almost four hours and ended up having a ton of fun! I just know I am never going to be 1 mile away from him ever again.
Post run dip and sandwich in the Yellow Breeches!
He didn't catch anything but he had a lot of fun!
Have you ever had to sprint anywhere because of an emergency?
I'm really glad you shared about this, Meg! I think it's so good for everyone to know that we all don't have picture perfect lives. That behind all our great workouts and meal plans, we have a real life with real discomfort and real stress. I'm sorry that you two have to deal with this but man, are you guys ever a good team. If I can say one thing: caregivers often get drained (not just physically, but emotionally, etc) because we don't look after ourselves as much as we "look after" (help) others. So just make sure you're caring for yourself too. XOReplyDelete
Thanks you Suzy! I don't talk about Paul's health a lot on here because that's not what the blog is about, but like you said it is good to share the bad stuff too. (Paul is very private so I have to be careful how often I open my mouth!) I agree we are a good team. That's what I said to him all the time- that I wish I could share the burden of his brain tumor but I can't. Instead, I can just do everything I can to make him happy and life easier for him in the meantime. And thank you for the reminder about taking care of myself.Delete
Bless your heart, Meg. Both of you lead a life the rest of us know nothing about. It's not lost on me how stressful that has got to be day in and day out. I am happy it was all OK but wow, what an event. I am hoping your upcoming weekend is much more stress free and relaxing!ReplyDelete
I am hoping for some stress free days as well! We all have tough stuff going on in our lives. I am just happy Paul and I have each other because like Suzy said, we're a good team and we make each other laugh every day!Delete
Oh my gosh Meg, that sounds completely scary! Your strength and love for Paul really shows in this post. I'm so glad everything was alright. Enjoy the weekend together. :)ReplyDelete
I am glad it shows through because sometimes it is hard to express how much you love someone! :) I hope you are having a great ANNIVERSARY WEEKEND! :) Ours is Sunday... I got Paul an ugly wolf t-shirt and tickets to see Jerry Seinfeld in Hershey in Nov. He is going to be SO surprised!!! :)Delete
Oh wow, I can imagine how you heart was racing and how fearful you were at that point. Sorry that happened. That's great that he has you, and I'm glad it was all well in the end. This made me think of a post you had about pot in Colorado. It's amazing how much that would help him but it's not available to you?ReplyDelete
Thanks, I am glad he has me too! :)Delete
Unfortunately medical marijuana is not yet legal in PA. :( It's available in a lot of other states. Waiting for it to pass here.
It must be so exhausting to constantly live with the fear that Paul may have a seizure. You deserve major kudos for being so supportive, even though I'm sure you don't see taking care of him as a burden. You're doing a good job. I think the system you guys have in place sounds really smart, too.ReplyDelete
I'm glad the seizure wasn't bad, and that you got some sprints in ;o)
Exactly, it is stressful yet I am glad I can be there for him. I mean, to say I am glad to be there for him is an understatement. If he has to deal with a brain tumor, surely I can deal with taking care of him!Delete
I agree, I feel sad that we have to deal with it but happy that we have each other. If anyone can suck it up and deal, it is us! Paul mainly. He doesn't let anything get him down. Well, I'm sure he does, but not as much as you would think.ReplyDelete
That is a really sad story about your hubby's friend. I would never leave Paul no matter what. No matter how is situation ends up being, there is no way I would leave his side.
I am so glad he is okay! How stressful to have to constantly be worrying about that, but the fact that you so selflessly help him is extremely admirable. And he's awesome for not letting the seizures get in the way of every day life and his activities! Thanks for sharing this! You two are adorable.ReplyDelete
Welllll it is a little selfish only in that I love him and don't know what I would do without him! :)Delete