I feel like I don’t have time to give up.. But I wanted to Friday and I feel like as a spoonie as a person with a chronic illness you have days that you feel like giving up and you feel like all of this is going to hell and you see the tears and you see the pain that these diseases and the Drs who have no clue what to do so they do nothing..
You see the pain that they cause not only you but your family and your friends and your life. You watch as your sister has to give up more shifts because you can’t be left alone due to the seizures and passing out but then you see the closeness it has brought you and your sister that closeness that k serously would trade for anything. That love that my sister has for and how hard she has fought for me time and time again and that she hasn’t given up she hasn’t told me this is to much for her.
That’s why I keep going that’s why I can keep going becaus did she can fight that hard for me. Then I have to fight that hard for her. I see Nick and I see Rory and I see how they fight for me in so many ways. Nick goes out of his way to make sure I’m safe and to make sure nothing happens to me. I’m scared all the time because these diseases they just flare when ever they feel like it. My body is failing me and at times I have failed it and I have failed my family. On Friday I was upset. I was scared I was emotional.. And giving up seemed like a choice but on Saturday morning my mom came into my room and told me that we are fighting together..
In this family no one fights alone but in my life I have friends who fight with me and they also fight their own bodies. I don’t just have my sister Stephie and the rest of my wonderful family. No I have friends who fight hard and long hours who pull feeding tubes out their nose at 3 am after having to do the same thing the night before.. I have friends who grow new bone over there old bone and still wake up everyday and have a sassy beautiful soul and are basically always positive! I have friends who fall asleep for days at a time and still find the good. I have friends who wouldn’t give up anything to make sure I’m safe. I have support but that support is something I wish everyone had….
My body has fully failed me time
And time again I’ve been told that making it through the night might not happen.. I’ve been told that that anaphylaxis reaction should have killed you.. I have been told over and over again this shouldn’t happen.. But it did.. I’ve had bad luck with Drs and I’ve had the Best luck with Drs as well I have fought an do have almost given up. I haven’t always been strong but I’ve always fought..
This is a fight that is insane like the wonderful fight song says “this is my fight song prove I’m alright song… My power turned up starting right now I’ll be strong this is my fight song..” And her other beautifully written song “I’ll stand by you even if we can’t find heaven I’ll walk through hell with you… Oh your not alone cuz I’m gonna stand by you” I have people standing by me. I have people with me fighting this long hard battle that will one day most likely take my life but I’m not going down without a fight and neither is anyone else around me.
I had a dr last week make me feel so out of control and so scared but this weekend the people in my life stepped up and yelled and raised some hell for me.. They are walking through hell and they are all going through something outside my own little wolrd.
We live a life of hard test and so many road blocks this week I was taken off the road I was on and put out in a snow place and I sat down in that snow and instead of freezing to death so many people just came around and they all warmed me from the inside out.. They didn’t even know everyone else was there.. They all stood side by side and said Shay you got this.. We know your strong you got this and I didn’t think I did but I stood up.. And I didn’t let the ice cold of someone who truly didn’t understand a dr who had no clue what she was doing I didn’t let that take me because I had people who stood by me and they totally walked through hell with me and we are no where out of this snow yet and these woods are hard to see in but I’m walking and I’m not failing my failing body..
- Stand by you and Fight Song these songs have helped me get through!! I got this fight but no one fights alone. Keep up the fight if your fighting remember there are lots of spoonies and lots of people who are waiting to fight with you always reach out and be open about what your going through being honest about my illnesses was an amazing choice I made and I’ve never once felt like it was wrong. Because I met Dara, I met Macy, I met Jazzy, I meet Cheyanne, I met Ashley, I met Rachel, I met Aileen who started it all for me.. And after a year of being friends with Macy I know that’s being open and telling her that baby food was really good that friendships and weirdness and a love so deep and bound so strong was formed.
A year ago I fought and my sister told me she was gonna fight with me. She told me to just fully move up here to be here wit her and that she would fight with me..
I never would have imgained that we would fight almost death more then once and that we would endurn 2 comas, over 30 MRIs and four surgeries 3 central lines around 9 feeding tubes and over 90 days in the hospital and over 100 ER visit that didn’t end in being admitted (with me telling Drs I’ll be good to go home.. ) I didn’t know that this is what my body was gonna do but Stephie, Nick and my supporters sent me funny text brought me amazing gifts gave me manatees and Teddy bears that looked like Beng! They gave me hope for tomorrow and lots of colouring books! AnnaJoh facetiming and sending me adorable cards!! And texts! Tara and Holly would just come up and sit and talk for hours about nothin and everything!! Lanie would send me the sweetest little messages that always made my day!! My aunt Helen facetimed me always at the best time when she knew I needed it! Vampire Vana driving up just for the day to see me Rory and Stephie!! The sweet short text from Sammiy! The “I love you Shay” texts from Sean that I randomly get! Stephie and my parents bring me milkshakes up when the steroid cravings got way too real.. They got me anything I wanted and they spoil me more then I knew as possible and they love me. They never give up on me, They care for me, they fight for me, with me but never against me… and I fight for them because I still got a lot fight in me..
ShayWeasel out… Fighting…
Thanks for fighting with me!