This is my blog about living with chronic illness. I have Ehlers Danlos Syndrome, and POTS. One thing I refuse to let illness take away is my funny. It's about all I got let. Laughter gets me through things, and helps me get out of things. So come laugh with me. Why not?
Tuesday, April 30, 2013
Day 4 The Hamsters In My Head
He may not be a Hamster. But he is Guinea Pig names Spanky! So I had to post a pic of him. He belongs to a friend.
From the time I was a kid I was always doing something. Always busy, and on the go. I could never sit still. Always talking too. My brain always had something to say. Plans to carry out, and was full of ideas. Never lacking in direction. Most times I was only along for the ride. I was pulled along here, and there. Doing this, and that. Rarely ever one thing at a time. Where was the challenge in doing only one thing at a time? My brain just NEVER SHUT UP! Even when I wanted it to it didn't. Always these ideas, and plans! So it was easier just to follow.
When I was in Middle School my teacher had these hamsters. They where forever running on their little wheel. Always running all hours of the day, and night too I'm sure. Their little wheel made this annoying squeaking sound that could only be heard when their was rolling very slow almost at a stopping point. This didn't happen very much as they only stopped to poop, drink, mate, eat, and sleep. I was never there during the time they slept so they ran, and ran, and ran! But when they stopped SQQQUEEEK! That squeaking sound was so loud in my mind it was like a Black Cat firecracker! Yet every time it happened sqqqquuuek I would raise my head, and glare at them I would be the ONLY student that noticed! Did I have super sonic hearing? Spider senses? NO! Annoying noises piss me off! So it was then that I started to refer to the rushing that goes on in my head as "the hamsters in my head". As I related to these hamsters so well. Always running none stop. And if, and when they stop they make that annoying squeak sound that drove me nuts! It reminded me of when a group of people will be talking then everyone stopped, and there is that uncomfortable silence. When they stop running, and you hear that squeak. If my mind ever shuts up it's just like that. That uncomfortable silence when everyone stops talking at once. Sqqqqueak! Plus I only slow down to poop, eat (sometimes), drink, mate, and sleep. And I'm like hamsters too I don't sleep a whole hell of a lot. And often I even poop little round balls. And I have tons of hair.
From Middle School on The Hamsters became a part of me. I referred to them often, and all my friends would giggle because the analogy fit me perfectly. They knew how I was always the thinker. Always something to say, something on my mind, and something to do. Ideas of things to do later. And I always had some kind plan brewing. Back then I was famous for saying "I got things to do. Places to go. People to see." I had so many dreams I was going to accomplish. A list of things I was going to get done. Getting sick was not one of them.
Even though from the time I was a kid I knew something was wrong. Things didn't add up. I knew something was wrong. Something didn't fit. I just didn't know what. But then on the other hand I didn't want to be sick. This both helped, and hurt me. It hurt me in the fact it delayed my diagnoses. All the time doing further damage to my ligaments, and joints. It helped me in the fact that I got to accomplish some things I'm not sure I would have done had I known about EDS/POTS back then. I had allot fun. I sold my wild oats so to say, and that I don't regret. I had fun in my younger days, and that gives me many good memories. It also makes for me being a content old lady. I don't wonder what it's like to party, or have fun. I did it.
So then after I'm diagnosed I found myself lonely, and sad. Confused, yet relieved. I desperately wanted to meet others like me. Yet with two rare illnesses, and living in a way small town someone suggested Facebook. As it was highly unlikely I would find someone locally with POTS, or EDS. So I gave Facebook a try. I quickly found Facebook support groups filed with people just like me! People that wanted to help, and encourage me. People that understood my brain fog, and fatigue. They understood the lack of family understanding. Could it be? Others just like me? Yes it was so. So slowly I came out of my gloom. And realized that I could go on. I could possibly even make a difference. Sure I was still sick, but I still had talents. Certain things I could still do. Sure I did them slower, and had to double check my work but I could still write. I could still make others laugh, and hey I was a likable person. And I told myself if I could help even one person than all my efforts, blogging, Facebook posting would have been worth it.
So it was then I decided that maybe I should help people. Because no one understands illness as much as people that are ill do. We all wish that we could make the normal people understand. Our families, our communities, and our friends. My Hamsters still think they can conquer the world. But sadly my body cannot keep up with my brain anymore. So this is what confuses people. I have the whole "you don't look sick thing", and they whole "you don't act sick". Well first of all have you ever heard that saying "you don't know anyone unless you live with them"? That is how it is with me. Sure I look like crap some days. You just likely don't see me on those days. But my husband, and kids do. You aren't here when I get pist off I can't add simple numbers or have to spell check anything I write 6 times. You read these blog posts, and may not realize they sometimes take me days to write. I sometimes can only muster a sentence or two at a time. You don't see my little freaks outs, or my fits. The tears, and you aren't hear to see me rock back, and forth in pain. You only see what I let you, and only know what I tell you. I have my reasons. I wan't to be funny not depressing. Even though ya my life is pretty damn depressing sometimes. DUH! I mean how could anyone have EDS, POTS, and the chronic DAILY headaches like I do, and not get fed up sometimes. Sad, and pist off? It wouldn't be normal if I was all tralalalala all the time. As is it's not normal to be all doom, and gloom all the time either. I just choose not to write about the nasty stuff. Expect poop. You will hear about my poop I promise. But if you ever want to know. Just ask my hubby. He will tell you that I'm not all Peaches, and Cream to live with 24-7.
Some days I barely exist. Barely speak. You don't see that because I don't let you! That doesn't mean it doesn't happen though. The days spent in bed. On the couch moaning, groaning, and saying more cuss words than any bad movie. But you have to understand all the while my brain is still going 100 miles an hour. But just because my Hamsters think they can make me do something. Or write a blog post every few days, because I sure would like to. My broken body just can't keep up. So I have had to learn to ignore all my ideas, and write allot of them down. I do the very important things first always. Write about what I think is most important first. Do the most important chores, and errands first. Because if I get tired sooner than planned I want to have the most important things done. The other things just have to wait. Life is to short to try, and fit up others expectations. You just have to do what you think you can. When you can. Take care of yourself in the mix. Because you just have to.
Today I'm thankful for Jolly Ranchers My Kitchen Aid Mixer good books my dog