1. You almost always have selfies from a hospital/ER on your phone at any given moment….Admit it..

When you have a chronic illness you get all drugged up from the medicine my personal favourite selfies of mine are when I’m super drugged and you can tell.. Like someone should learn to take our phones away but it just makes for a good text to your best friend the next day.

   2. You  lose people close to you

When you become ill, people stay for a little while but when you can’t hang out and you’re to weak to text them back they slowly fade away, even family and close friends. And thats when you 

     3. You find the world of spoonies.

spoonies are people who are chronically ill, people who deal with being ill, and when you find this world online its like magic, you find people like you, you find people who enjoy the weird things, they take photos of their feeding tubes and their ports like its nothing and for a moment when you are having to deal with this world you feel slightly normal…

      4. You set goals like Showering, Taking Meds, Eating anything..

Your goals might be small to some people but when you have a chronic illness and take a shower its like a big freakin’ deal. Its hard to shower, its hard to move let alone do things that are physically hard..

     5. Watching Netflix/Hulu/Cable has become a sport.

I can tell you all the good shows out and I can total win any trivia game on TV shows/movies. I’m really good at Netflixing…. Its a passion.. At two am..

    6. You learn that people don’t care when you don’t get better fast.

People for some reason seem to not understand the chronic part of chronic illnesses, they for some reason forget that chronic illnesses don’t get better in three months and rest, and they forget you… And slowly people just aren’t there. But slowly you find the people who stay and stick with you and those are the people who are our heroes..

     7. The guilt of having a chronic/rare/incurable disease is worse than the pain from the disease sometimes.

I have a few moments where I felt horrid because of the guilt, I couldn’t wash dishes and you feel guilty because of it. You want to be there for your family and friends and you don’t want to make people do things for you. All the money they spend, all the sleepless nights, we notice them and we are really thankful for them. But we do feel bad that we can’t make everything so much more confusing..

    8. You learn that people stare at you for weird reasons all the time.

You always get stares, if it’s because you’re in a wheelchair, or using a walker or if you have a port connected to a backpack or if you have a feeding tube sticking out of your stomach at the beach or swimming pool… Or for no reason at all… We learn to deal with the stares and we have to learn to laugh.. about them… But please don’t stare.

     9. You learn to enjoy little moments

I love being able to wash dishes or go to target on good days and I love facetiming with my friends who also have chronic illnesses and talking to them is so little but so nice. The T-Shirts that your sister got you and the spoon necklace. Its the little things. The smoothie my sister brought me to bed this morning that meant more to me than words can say… It’s all the little things… It’s all of them…

    10. Doctors call you more than most friends.

I got a call from my allergist the other day and I was talking to them, and even this morning they called me. The nurse totally knew who I was. And this happens a lot…

     11. You sleep more hours than are awake some weeks and vis versa

A while back I slept for like a bunch of days in a roll.. Or wait I was in a coma (coma joke…) But sometimes I can’t sleep like this week, my body doesn’t want to sleep unless it’s like two in the afternoon. But last week I was like non stop sleeping. All the time I was sleeping so hard…

   12. You accept that your life from this point on is a chronically amazing one…

I might be chronically ill but I’m totally chronically amazing, I will be sick it’s just a matter of how sick I will be… But you know I can find the happiness in each day, I hate to because it’s silly not to… I will be okay because I will fight till the day my body has no fight left in it… And even then I’ll fight like hell.. And I know I have some amazingly fantastically people who will fight for me and with me and along side me… I’m accepting that I’m sick, I’m ill…

   That changes me… But in the best way possible… It has showed me so much that I never knew. It has showed me how to breath deeply and enjoy the air. It has been so amazingly wonderful and my life is good.. I like my life… I like the world I have… I enjoy my world…

 I wouldn’t change my spoonie world for a lot… I was born and my journey is unfolding exactly as it should be!!…. I am strong enough to live in my body…

So yea… Shayweaselish……