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.


  1. Right there with ya':(

  2. Oh girl, I totally understand. Sometimes I am so sick of putting on a "happy face" and pretending to the world that I am "okay". I hate invisible illnesses so much because other people think we look so dang good, it's impossible we could be feeling like hell. Sometimes, just sometimes, I wish I looked how I felt.

  3. I'm right there with you. I am so tired of putting on my happy face. I'm still forcing myself to go to work every day because my hubby is disabled too, and neither one of us has a doctor that understands what we go through on a daily basis.

    I made it through work yesterday, and had one person tell me I should I go to the hospital... I was a bit more "visible" yesterday, though.