I have reached that point in my Chiari life where I keep wondering why the hell am I still alive. Furthermore, is my life even worth living? Its a hard thing to admit but this summer while I was super sick with bacteria after bacteria infections, and having to take 8 rounds of different antibiotics, is when I realized how depressed I was and I guess am. So many of our fellow Chiarians end their life themselves. Even when my Mom died and I so badly wanted to be in heaven with her, I could never imagine taking my own life. I have known people whom have committed suicide, or attempted. All of them were in their teens at the time. I could not fathom, how anyone could do that. Really leaving all their loved ones behind, taking the easy way out….whatever. Even as I reached adulthood, and I understood more about how someone can be hurting so bad inside. Emotionally destroyed that they see no other way, I still couldn’t ever imagine anything that would push me that far. Now I know. And if not for my boys I wouldn’t be alive right now to write this.
It is hard to explain to someone how much physical pain someone with Chiari has, let alone how hard it is on us emotionally. The pain never stops. Ever. Every second of my life I am in pain. Yes I have medications for that, and my family Doctor has been really good at helping me figure out how to control my pain, but not have to take more narcotics than I want to. Like I have explained before, the pain varies on intensity from day to day and even hour to hour. Also there are triggers that cause more pain… Walking, Stress, Lifting More than I should (10lbs), and basically anything physical. I have always had the philosophy that some things are just worth the extra pain. We have been through all this before, but what happens when your physical pain is matched by your emotional pain? I found out this summer.
We had 2 deaths in the family that would make anyone have the blues for awhile. One of these deaths was a complete surprise and hit our family hard. The other one, just as sad, was more of an expected one (she had been sick for years and years with multiple serious conditions.) So yes sure these deaths did contribute to my severe depression I had this summer, but they were just a blip on the ‘why cant I die’ screen.
Summer is hard for me in the first place. Kids non stop, no sports, the sun makes me sick…It is not my favorite time of year. Yes I did enjoy the sleeping in but that’s it. Other than the infections I had, I’ve noticed where my Chiari is just making me regress further and further. I have been forgetful before (remember when I forgot I bought a certain pair of panties?) , I had days where I had to ask multiple times what day it was. I didn’t even remember asking the first time. I am starting to feel like I am getting Alzheimer’s. Also my fine motor skills are in a steady decline. I can be writing with pen and paper and my hands start shaking so bad I cant even write. I have a hard time holding a glass sometimes. I shake a lot, nothing new but just the decline. And the worst thing I started noticing is I will lose words. This isn’t exactly new, but it has never been like this before. I can be talking and mid sentence I lose a word. Have no idea what it is. I can describe it but something as simple as scissors I forget what they are called. This actually happened this past Saturday, I needed some but could not figure the word out so I sent a text to Mark to bring me a cutting thing. Also the pain is worse these days than I have ever felt.
So we have my decline in health which I have always had a problem with and have been on antidepressants for near a year now. They did help til this summer. Everyday I would try to get out of bed, despite the pain, despite that my infection has me so tired I cant wake up. Taking care of two boys, absolutely doing nothing with them cause I cant. I hurt too much. Antibiotics have me so sick to my stomach I don’t even want to move. Lets add now to the fact that the house is always a mess. At times downright filthy. Oh and I cant clean. Technically I could, but bending down to pick things up makes me feel like I am going to vomit, and sometimes does. I have tried. I have tried and tried to just do little bits, or do it on a good day. Nope. I get as sick as if I went for a two block walk. There are things I can do, anything that is at my level, such as a counter, I can clean off the clutter. I can fold laundry. However, the majority of the housework I can not do. Scott and Peyton have chores of course and during the summer most weeks they were really good at them. So if you will imagine yourself, in horrible pain, things are getting worse. You are all alone all day with these rowdy boys, sometimes more than just my two. Not able to do a single thing with the disgusting house that I had to look at every day. I don’t ever leave the house. Ever. As soon as Mark gets home I fall asleep. Sometimes for an hour, other days until morning.
This is where I started wondering what the hell is the point. I’m not being a good mother, I swear my husband hates me and I’m not even contributing at all. To anything, to my family or to society. Sure you all saw me on social networks and stuff but who cares? Internet friends aren’t real. I cried for over a month straight every night. Asking Mark if I can just be done. I didn’t want to live at all anymore. I wasn’t contemplating suicide, but only because I couldn’t leave my boys. But I was at that point. Obviously I knew I had to do something. I reached out. To someone outside the house. A very good friend I call Taylor (not his real name) He kept me going most days. If I even mentioned not wanting to live he chewed me out so bad.
You may be wondering….Um Misty what are you even getting at here? The title has nothing to do with depression or suicide.
Ahh but it does. Those three words are what have helped me slowly come back out of my depression. Still depressed and probably will never get away from the clutches it has on me, but I figure it is pretty damn normal for someone in my situation to be depressed.
Lets start with School. I’m going on my 3rd year helping out in Kindergarten. I don’t get paid. No matter, I show up nearly every day and help teach. Sometimes I do actually sub and I do get paid for that, but 90% of the time I am in Spanish Oaks Elementary is on a voluntary basis. I found that I am great with children. Love them. Love helping a kid learn. Also not one thing I have ever been asked to do has made me trigger a bad day. I do have to say if there is a day I have to Sub a full day and maybe an upper grade, the stress does get to me. My boys love me at the school and they always want me to Sub in their classes. Also I have found I very much enjoy being in the PTA. In fact, this year I am President. It is a lot of work, and yes the stress has a few times made me feel like crap, but the feeling I get while I am doing it is more than worth it. I am always joking to the staff about how I’m addicted to being at the school. Cause even on days, I’m not needed or there is no kindergarten, I find myself somewhere helping out in the school. I step in those doors and stress just melts away. I feel like I’m giving back! So many times have people helped me. I even get paid because I’m disabled so, this makes me feel like I’m giving back to society and paying it forward somehow. Which sorta brings me to that middle word.
The North. I am not going to get into all the specifics about what this is, but I was asked to be on a board made up of 6 very passionate University of Utah fans in the north end zone. It is a two part group sorta. The most important part of the whole thing, is we are trying (and succeeding) to provide scholarships for our Football Student-Athletes. The other part is really just having a great time. Showing the world how amazing our section of the stadium is, in fact the best section in the entire stadium. I think after this gets going a little it may be the best section in the Nation! So wait is this one of those giving back things too? Yes and No.
There is not a single thing that I wouldn’t do, if asked, for the University of Utah. It is an amazing school, not only in athletics but in every aspect. I have not been fortunate enough to attend this University, but I am a Ute no matter. How could I not love the U of U? They have one of the best medical programs in the world. Even though they currently do not study Chiari, they do have a very impressive neurological team. So yes being a part of The North is kinda giving back with the scholarships and all. But I think its more about being able to be at my absolute favorite place, since I was a tiny girl, and working with the best group of people I’ve ever worked with. This project has not been quite as smooth as one would wish. I’m very, very opinionated. I have a hard time not saying exactly what I think and the poor board has had to deal with my shit, and its hard for all of us. We all have different ideas of how we want things and not everyone is going to be happy. I’m working on trying to express myself in a more tactful way, but really I’ve never had a filter. Has nothing to do with not respecting anyone or anything, I just will make sure my voice is heard. Also because I hide my pain so much, sometimes when an email comes through or a meeting, I could just be in horrible pain. It is hard to always smile in pain. (more on that on another day)
Bottom line though with The North, it gives me something that I can do. I am part of. I’m helping make something special. So many reasons I love being a part of the board, but It gives me just one more thing to live for.
Depression is a very serious condition and not one that should ever be taken lightly. And now that I have been through that deep dark I don’t want to live anymore depression, I now get it. I can understand how someone just cant take it anymore. Hell the physical pain I go through is enough to send some over the edge.
I do not want to downplay, the importance of my family and close friends that have helped me the past few months. They have been a huge, huge help. It is nice to know you have someone you can lean on at anytime. It is even more amazing to have someone you can lean on outside your family, that you know no matter what is going on, they always have your back. Thank you Taylor…..so so much. Also Mother Batman. You with your inspirational posts, and willingness to talk to me about how hard it is to deal with a debilitating disease, while trying to raise a family.
But the point of this entry is to let everyone know why I’m so insistent on volunteering my time. Why I have no problem driving to Salt Lake for a 15 min meeting. It is keeping me not only alive, but happy.