What you don't know

I guess it's probably about time that I write another one of these blog posts. It's been almost two and half years since I had that stupid stroke along with multiple brain surgeries. However, life hasn't really gotten that much easier for me yet. At least not in the sense of what I feel day to day.  Today I kind of just want to share with everybody what it's like to be living with a long-term brain injury even though it's something I really can't explain.

If you know me, or you have scrolled through my facebook page, or you have heard about me from someone else, you probably know that I seem completely normal. Anyone looking at me from the outside would never know that I suffered such a traumatic injury. I truly do count that as a major blessing. However, it also makes it a lot harder to go day to day with the disabilities I do have because people don't understand when I say I'm sick.  Here are a few things I deal with that might help you understand.

1. I literally always have a headache
The best way that I can explain my headaches are compared to menstrual cramps. You know that feeling when you have a major cramp and nothing will help it go away...then every once in while you just get this 5 minutes of no cramps and it feels so good? Sorry dudes, you may not know what I mean but I think you'll get the gist. Anyway, that's how my headaches are. I wake up in the morning with a headache. Then I get dressed and I still have a headache. I brush my teeth and I still have a headache. And then suddenly I just get this relief and it's amazing... Then it comes back after a couple of minutes. If you ever been to the hospital and they asked you what your pain is on a scale from 1 to 10 you'll know what I mean when I say that my headache is usually around a five or six. When a gets to a seven or eight is when I get out my drugs. That really does happen less and less which I am grateful for. I don't like living my life on pain meds. And because I don't like living my life on pain meds, I don't. Which means I'm usually just in pain. This leads me to number two.

2. I am incredibly flaky
You may have invited me to one of your parties or gatherings before and I either didn't come or left early. Please don't ever take this personally from me. I can't handle crowds anymore. I even flake out on my own parties sometimes. That means I miss a lot of my own children's birthdays. I'm usually pretty miserable on Christmas. I don't attend the family Easter hunts. Or sometimes I do attend them but I leave sick. I may not look like it but I am missing a big chunk of cerebellum. That means I have really bad coordination. It took me a long time to understand that the reason I have such a hard time in crowds is because it takes a lot of coordination to pay attention to that many things at once. It literally makes me nauseous. The last time I had a really hard time with this was when my niece Katelyn got her mission call. I knew I would have a hard time with this because Katelyn is really popular and has a lot of friends. I mean and who wouldn't love her, right? ;) But one thing I would never miss out on is my niece's and nephew's mission call. My very favorite part of my life was when I went on my mission and I would never want to miss a minute of theirs.
We were some of the first people there so I thought it wasn't going to be that big of a gathering and I would be OK. Then more people started coming. And more. And more. There were people getting food and people talking, my little boys Harvey in Jorgen were playing and they were the center of attention of course because they are adorable. But between trying to listen to what Katelyn was saying and watching my boys-- making sure they weren't getting into anything or jumping into my sister's pool and everybody around me speaking, I suddenly just started to be really panicky which is the first step. Then I got dizzy, which is step two. Then I got nauseous wish a step three and usually when I leave. But this time it was so bad that I didn't have time to just deal with it. I had to leave and throw up. Then step 4 is extreme fatigue and insomnia.  Granted that It is a really extreme example I don't usually throw up from a crowd. I should have left when I felt the panic. But whatever-- I didn't and I'm glad I didn't because I got to hear her say she is going to Portugal which is freaking awesome!!!
 Anyway, I didn't tell that story just now just to make people feel bad for me. In fact I don't think my family even knows that that happens to me that day. I don't even care if they do know.  It doesn't matter...it just happened. That's part of my life now and I'm actually OK with it. I just need other people to be OK with it too. So once again please don't be offended if I flake out on you.
There's actually another reason that I'm a flake out on you, this is one that's more common. Which leads me to number three.

3. I get anxiety are really weird times.
I think I've mentioned before that before this stroke I didn't really believe in depression or anxiety. Those are just things that are part of life. Everybody gets nervous sometimes and everybody gets sad sometimes. Go for a walk, get some fresh air, eat better food and you'll be all better. Right? Though I actually do believe that this is still the case with most people that have depression or anxiety, it's not the case for me. I don't eat perfectly and I don't exercise every day and I'm sure if I did those two things my anxiety would go down dramatically. It is quite possible that it's because I don't do those things, but my anxiety is very very real. Sometimes I'll get up and be completely ready for the day and ready to take something on. Then I go to the car and start to cry and cry and cry for no reason at all and I just go back to my house and sleep. That's made me miss a lot of school, a lot of parties, a lot of church, a lot of things that I want to be to. And when I do miss those things and people ask me why I didn't come, I lie. I say that I forgot or that I was sick or that my kid was sick or that Cedric needed my help with something or there was a family emergency. I will never tell you that I had an anxiety attack. It's embarrassing. Anxiety is not in my nature. It's an imbalance in my brain. That's not something that I can fully embrace.

4. There are moments that I truly cannot stand being around my own children.
Toddler boys are loud and rowdy. That's something I absolutely love about Harvey and Jurgen. But it's also something that makes it so I can't be around as often as I wish. Coordination issues, remember? So it brings my patience to an all time low. My boys are just being boys. They're not being naughty at all or getting into things, they're just playing. But I can't handle it sometimes. That's not fair to them and I know it. I thank God for an amazing husband who will take over when those times hit. I also thank God for an amazing nanny who helps to prevent those times from coming. It's really hard to accept that I need help being a mom when that's all I've ever wanted to do. I can't tell you how much I miss being a mommy all by myself. Maybe I will be able to again someday, but right now that's my reality. I just hate that I have to miss so much of them growing up.

I could keep going with this list, but I really don't want to because it's depressing me. My life is good. I know my life is good. It got a hell of a lot harder in 2014 when I had that stroke. There are things I truly miss about myself but there are also things that have become even better since 2014. I've grown up, I have a deeper look on life, I appreciate the good moments so much more than I ever have before. This sounds kind of funny but I'm truly wiser. I make my decisions much more clearly and not so spontaneously. I'm not so quick to quit things, I appreciate help more than I ever have or ever would have before. The list could go on and on and on. The list of good things that have come from this are a lot longer than the bad things. But from those four things that I just listed I'm sure you can understand why it's really hard to focus on the good things when the bad things are so in my face.

Thank you for reading.   I hope my blog can help someone out there who needs it.