Having Ehlers Danlos Syndrome is a real pain in the ass. I do mean that literally, and figuratively. I have Sacroiliitis, and it causes me pain. Also stiffness, and even makes the joint hot to the touch all the time. It also causes problems for my pelvis in general. So don't ever play spank me. Oh no don't ever. Mama will come around swinging every time. I also have Scoliosis, problems with my knees, shoulders, neck, hands, feet, and I get frequent migraines. I'm sure I left things out. As when things are painful they all just blur together after awhile. You know like the Charlie Brown teacher?
All these things hurt, and they hurt very bad. It is not will I have pain on a given day. It is how bad will I have pain on a given day. So that leaves me with the question? How do I control my pain? Pain makes me a bitch. Pain makes me slow. Pain makes me tired. Pain makes me sad. Pain makes me not me. It makes me act in ways I would never act if I was pain free. I'm a happy go lucky hippy. I love everyone. I write poetry. I'm hyper, love to cook. I'm always making crafts, and I always have this positive out look. Yes despite having a chronic illness this is how I'm. I'm the funny girl. Always cutting a joke. Making you laugh. In pain I'm a pist off bitch. Ready to snap at the least little thing. I can't take a joke let alone make one. Chores are mountain to me. I feel like they will never get done, and I'm not thrilled to do them as I'm tired! Also in pain!
When in pain things that are little are big. Quiet, loud. Kids only mildly annoying, feel like they have been whining for a century. I have zero tolerance, and instantly all family members others than my hubby are bat shit crazy. Yep if they are that crazy I can run them off. Off to a far away place where things just kinda disappear. Like socks, keys, candy, money, and bacon. In pain I settle for things I would never deem appropriate otherwise. Like feeding the kids fast food, letting them stay up a little later. Things effect my body different. When I'm in pain I can here a mouse fart across the house. A simple stroke of my arm feels like you are using a cheese grater. A simple hello sounds to me like HHHHEEEELLLLOOOO!!!! Most smells send me puking like a crazy pregnant lady. Lights suck, sounds suck, and even my ever beloved heavy metal music might be to much. I dislike talking on the phone, and dread going in public. Then I feel bad for doing none of the above. My mental me, and physical me rarely jive anymore.
So pain doesn't work for me. Not only does it physically hurt. It takes away my time from my family. It cost me money. It causes me stress, and anxiety. It causes my family stress, and well it sucks! Sucks more than a cheap porno!
I have a lovely pain management doctor. Whom I'm thankful understands EDS somewhat. She was kind enough to explain to my husband how pain effects the brain, and mood. That it was not just me that pain makes pist off. Pain really does effect your mood. She suggested a few journal articles that he read. That helped allot. For him to know that pain was 'playing with my mind'. Not just me flipping out, and being a bitch just because I felt it was a cool thing to do.
Having EDS, and a good doctor I have choices on my pain management therapy, and I'm very thankful. I'm glad that she listens to me about what works, an what does not. Like she doesn't assume PT will make it all better. I know there is a time, and a place for PT, but for pain management? No. Injury? Maybe? She tells me I don't utilize my medication enough, like I should. This is what worries me. I told her once that I worried I would become addicted to the pills. She then informed me that I was no where near habit forming level. I'm not taking near the amount of pills for it to even be of an concern. I'm not on a high enough narcotic at this point for it to be of a concern. Out of all her patients I was at the bottom of her concern. As I just don't take that many pills. In fact she gets after me to take more pills. That I shouldn't sit around in pain. Who am I trying to prove things to?
I'm not Superwomen. Why should I keep trying to be? To prove things to. Pills, and me have a hard time. I take the pills they relieve my pain. I get more done. I'm not a bitch. I can play with my kids. I can cook. I can clean. I can sleep. You would think it would be a no brainer right? So why do I struggle so much? Yet each time I'm in pain it's a viscous cycle? Why? Well that is probably a question I have come to as close to answering as where all lost socks go? Or why kids eat boogers? Or what are cartoonist thinking (or smoking) when they write modern day cartoons? Who thinks up words? hmmmmmmm
So you think if I fashioned wearing a cape it would help?
Tuesday, April 24, 2012
Tuesday, April 17, 2012
Under Pressure, And Where Did My Whaaa Go? Wait I Forgot.
When you are sick you are under pressure in many different ways. Always. To feel better. To do better. To not hurt so much. To remember shit. To take your pills. To get out of bed, and live a little. The many doctor appts. Physical theraphy. Oh don't forget eating. Showering, and shopping. Get the kids to school on time. Even when you feel like death warmed over, when your BP is so low the cuff won't read it. Hungry kids. When you are sick these things can be a chore. So you feel this presure to do them a certain way. At a certain time. Or that you are not doing them good enough for your family.
You feel like you are a major failure. Just because we don't work don't, mean we don't work. Man we work!!! Fighting the damn demons within us is work! Somedays taking a shower feels to me same as a full days work to my husband. Fighting my pride that I don't feel like a worthless douche all day is work. Advocating for my own rare illness because even my own doctors don't understand it is work. Trying to make my family understand, and accept my illness is very HARD work. Then of course I do have kids.........Try that with a migraine while vomiting. Still that pressure is there to take care of them babies. Mama always comes last.
Pressure. I feel pressure. Pressure to be who I can't be sometimes. To do what I can't do. To be what I used to be. To try, and do things physically I can't do anymore. I try like hell though, and baby do I pay for it later. Pressure to be a good Mama to my kids. To always cook a good meal. Have a clean house. Why? Because that was how I used to be, and it's hard to let go of the old me. It's hard to not be a normal functional wife, Mama, and member or society. I want to be able to do what I want. When I want. How I want.
I feel pressure to look a certain way when you are here. To say certain things. To do certain things. To not act sick. To fake being well. Or you will think poorly of me. Especially friends, and family I don't see much. I feel that you won't understand that I may need to rest, and that I can't no longer cook for you. To visit with you like I used to. That if my house is not perfectly clean you will judge me because it was always spotless before I got so sick. That if my kids are not dressed in their Sunday Best you will judge me. I feel this pressure you see. I beat myself up that I don't visit much when car rides are hard on me. They hurt my back, and they cause my feet/legs to go numb. I feel pressure to come visit. Even though it will hurt me.Even though sleeping in a weird bed also hurts me, and I'm away from my dr's that makes me nervous. With 2 rare disorders it's hard to be away from "your" dr. You see I feel this pressure when you come visit. Or even when you call.
I feel this presure to try, and hang on to that little part of me that is still me. Even though I know I can't I try to do it anyway. Because others can't accpet I'm not the same anymore. I feel presure to try and be who I used to be. How can I remember to pay bills, take my medications, and dr appts when I can't remember how to do simple math sometimes? I have to count on my fingers. I fill this pressure that others want me to be a least a little normal. This presure caues my BP to go up, my head to spin, and migraines. I hate that I'm not who I used to be. It's so upsetting to forget things. It really hurts your pride. This is POTS, and this is real. We have can't remember shit so don't ask! To this day in my memory I only can site 3 telephone numbers from memory. 3!!!!!! Only becaue they people have had same numbers for years!!!!!! My long term memory fine. Short term memory is shit! Cognitive skills are sporadic. One day good, one not. I used to remember every ones phone number hunderds of them. HUNDREDS! Now only 3. When I call the kids I jumble their names up. I jumble sentences up. It pisses me off bad. I feel a pressure to keep my brain the same. I play puzzle games, and listen to music. However I'm still not the same. So TRY to understand. Please take away the pressure that I so I can better handle things! It takes allot for me to say I can't well I CAN'T there you go I CAN'T CAN'T CAN'T CAN'T anymore.
I just want to be sick sometimes. Just don't want pressure on me to be something I'm not. To be what I used to be. To be what I could be. Or what you think I should be like. I just want to be me sick, and crazy.
With a shitty short term memory.
You feel like you are a major failure. Just because we don't work don't, mean we don't work. Man we work!!! Fighting the damn demons within us is work! Somedays taking a shower feels to me same as a full days work to my husband. Fighting my pride that I don't feel like a worthless douche all day is work. Advocating for my own rare illness because even my own doctors don't understand it is work. Trying to make my family understand, and accept my illness is very HARD work. Then of course I do have kids.........Try that with a migraine while vomiting. Still that pressure is there to take care of them babies. Mama always comes last.
Pressure. I feel pressure. Pressure to be who I can't be sometimes. To do what I can't do. To be what I used to be. To try, and do things physically I can't do anymore. I try like hell though, and baby do I pay for it later. Pressure to be a good Mama to my kids. To always cook a good meal. Have a clean house. Why? Because that was how I used to be, and it's hard to let go of the old me. It's hard to not be a normal functional wife, Mama, and member or society. I want to be able to do what I want. When I want. How I want.
I feel pressure to look a certain way when you are here. To say certain things. To do certain things. To not act sick. To fake being well. Or you will think poorly of me. Especially friends, and family I don't see much. I feel that you won't understand that I may need to rest, and that I can't no longer cook for you. To visit with you like I used to. That if my house is not perfectly clean you will judge me because it was always spotless before I got so sick. That if my kids are not dressed in their Sunday Best you will judge me. I feel this pressure you see. I beat myself up that I don't visit much when car rides are hard on me. They hurt my back, and they cause my feet/legs to go numb. I feel pressure to come visit. Even though it will hurt me.Even though sleeping in a weird bed also hurts me, and I'm away from my dr's that makes me nervous. With 2 rare disorders it's hard to be away from "your" dr. You see I feel this pressure when you come visit. Or even when you call.
I feel this presure to try, and hang on to that little part of me that is still me. Even though I know I can't I try to do it anyway. Because others can't accpet I'm not the same anymore. I feel presure to try and be who I used to be. How can I remember to pay bills, take my medications, and dr appts when I can't remember how to do simple math sometimes? I have to count on my fingers. I fill this pressure that others want me to be a least a little normal. This presure caues my BP to go up, my head to spin, and migraines. I hate that I'm not who I used to be. It's so upsetting to forget things. It really hurts your pride. This is POTS, and this is real. We have can't remember shit so don't ask! To this day in my memory I only can site 3 telephone numbers from memory. 3!!!!!! Only becaue they people have had same numbers for years!!!!!! My long term memory fine. Short term memory is shit! Cognitive skills are sporadic. One day good, one not. I used to remember every ones phone number hunderds of them. HUNDREDS! Now only 3. When I call the kids I jumble their names up. I jumble sentences up. It pisses me off bad. I feel a pressure to keep my brain the same. I play puzzle games, and listen to music. However I'm still not the same. So TRY to understand. Please take away the pressure that I so I can better handle things! It takes allot for me to say I can't well I CAN'T there you go I CAN'T CAN'T CAN'T CAN'T anymore.
I just want to be sick sometimes. Just don't want pressure on me to be something I'm not. To be what I used to be. To be what I could be. Or what you think I should be like. I just want to be me sick, and crazy.
With a shitty short term memory.
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