I often wander how Wonder Woman puts up with me. Yesterday I got lost in a bad part of town and expected her to know where I was with out street signs available as I freaked out for her to help yet I couldn't find street signs, finally found some and she finallly got me home. lol Apparently going around the block was a terrible idea. And the GPS was at home and my tank was almost empty.
Today she I had to deal with a not so nice person who made my hysterical. I am talking i can't catch my breath, chest hurts crying. Which is terrible for CF and POTS. I am still having issues with my breathing from this but I am ok. She had to calm me down so I could enough medication in me to help me breathe.
On top of this she is my nurse and is always the first person I call. She's always at my bed side, always at her phone, and always there to make sure everything is right. I often feel I need to protect from this life but there is no protecting the people that are close to you. You can't shield someone from the reality of your life especially those that care and can see right thru you. Now I have a few people that are that close to me but they usually get me after she gets the blunt end of me. Most times I don't mean to lash out but dealing with these diseases can be emotionally taxing. It gets quite difficult and when you are dealing with companies that won't help you or tell you what you need to do or tell you where to find policies at. She tends to get a lot of stress from me. Which totally isn't fair but I try to keep my emotions in check as much as I possibly can. But days like today that doesn't happen.
My life is not terrible it's just the opposite I just deal with health that likes to decrease here and there. I also have to get things strait just in case something happens and when the 2 collide together it gets over whelming. When you are chronically ill you deal with much more then just your health. You deal with so much more then your lungs and heart not working. Your systems slowly failing. Your IVs needing replaced. Taking medications on time. You also deal with loss.
Loss of what you use to be able to do, loss of friends that you use to have faith. Jobs. Freedom. The ability to do normal life things. You get harshly accused of things that aren't real. I often get accused of being anorexic or hormone imbalances when it's just I can't absorb most of what I eat. I get called anti social because it gets difficult to go out. You learn strangers are much more compassionate times then your own friends you've known for years that walked out on you. You find best friends become family and you find that new friends that find their way into your life can be much better then friends you use to have.
You find that people truly want to know your ok and you find people just being nosey and demanding. You get abuse in stores because you do not look sick because you spent hours finding the right blush to cover the sleepless nights and you find the right shade of lipstick to hide your purple tinged lips. You find a bit to big of shirt can hide your unintental weight loss. Some people will attack this and think your taking advantage of people and others will stop and hear your story. Wonder Woman assures me its there loss when they judge me and don't get to know me like I am some great person I don't see it.
Some see me as an inspiration which at times I find over whelming but other days I find my strength in that comment. You see I am just an average girl trying to make it this harsh world but also such a beautiful world that people do not stop and see.
Wonder Woman has seen every side of this. The girl that had no idea what to do in the face of a seemingly hopeless diagnosis and somehow found the strength to fight the odds. She has seen the tears, the pain, and the struggle. But she also see's me cry it out and pick it up and put myself out there to get awareness out. Sorry this is so long I guess I just needed to voice my frustrations to myself.
If you read this far. I right this to let people know they are not alone. We get a God awful diagnosis and feel there is no hope. We have days where we think this is the worse thing ever. I promise though it does get better and we have strength in those around us we just have to let them in. Alice said it herself though "I give myself very good advice I very seldom follow it." I guess I need to be more open with people.
Im off here though treatment is calling since I set myself back a bit with sobbing.
Love Y'all
Poppet
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