The irony of this post is unreal, I wrote it a few days before halloween with the purpose of going up on Halloween night with a makeup look that to me showed how I’ve been feeling on the inside – broken. But that never happened as at 2am on halloween morning I ended up in the ER. I’d had a server reaction to an iron infusion (that I needed because my body cannot absorb any nutrients and I’m unable to eat protein anymore). I was told to expect a headache, a bit of nausea and possibly some bone pain, what I had was so much more than that! I had the infusion on Tuesday and by Wednesday night I was in the worst pain I have ever been in my life. From head to toe it felt like I was being electrocuted and hit with a hammer, my heart was beating so hard I was short of breath, I felt so incredibly weak and shaky I could barely stand up without everything going black and dizzy. We went to the ER but they couldn’t do much, they tested for any bad things but everything was fine apart from my liver being a bit unhappy and my tachycardia being severe. They couldn’t give me anything for pain since I have so many reactions to meds so they discharged me so I could manage it better at home. For 3 days I didn’t do anything but sleep and drink water and shakes when I could. I was delirious from pain and barely strong enough to lift up my phone. I couldn’t stand noise or light and talking was hard and painful, so I was left with only my thoughts to keep me entertained when I was awake. I kept dreaming about the life I wish I had, my mind playing all these different scenarios. I’ve been having these dreams a lot lately and in a way I’m grateful for them because I get to in a way experience the things I miss out on but it always leaves this pain and strange space when i wake up because the reality kicks back in. No matter how much i want it that isn’t my life.
This year by far has been the worst, hardest and scariest year with my health. So many thing have changed in such a short time, I’ve been inundated with so many new painful symptoms. I’ve had to deal with new treatments, medication trials and painful tests. And if im actually being honest I’m scared and I never wanted to admit it but I am. I’m scared by how sick I am, I’m scared by all the tests and treatments I have to do, I’m scared my illness is going to stop me from achieving anything with my life, I’m scared that I’m losing the last of my teenage years to my illness and I’m scared of what the future holds with my health. I never imagined my life to be filled with illness so I don’t know what to expect, I try to put on a brave face and act like everything ok, that i’m fine with being sick. But I’m not fine with it, I absolutely hate it with ever inch of my being, I hate being in constant pain, I hate barely being able to eat, I hate missing out on so much because I’m sick and I HATE what its done to my body. I can’t run anymore, after 30 minutes of leaving the house I’m exhausted, I’m always sleeping and I can barely even write or type anymore because my hands are so weak and twitchy. And trying to get my head around the fact that this most likely is not going to go away, that I might never feel 100% well again or not have to adapt my life according to my illness. Complete strangers keep telling me I will be healed that this will all just go away. I wish I could just tell them to stop because that only makes this harder to deal with, because reality it likely wont go away, yes it can get better and easier to manage and I work my butt of everyday to make that a possibility. But there is always that 2 steps forward 4 steps back when it comes to chronic illness and the constant up and down fluctuations of symptoms that make life difficult.
I’m coping and managing being sick way better than I ever have in the past, I am able to push through my fears and do whatever needs to be done. (I’m becoming a pro at needles after all my blood tests, shots and infusions) but it’s definitely taken its toll mentally. My anxiety is sky rocketed and I feel down a lot, I know this is normal and to be expected when your this sick, but its frustrating because I hate feeling this way! I thrive off positivity so when I’m struggling to be positive myself its hard. I feel trapped in a broken body, there is no escape because my body is my home, its a part of me. It’s just a part of me I really struggle to accept now. My insecurities run wild as I’m like a stick, you can see my ribs and bones easily, my skin is covered in scars from strange allergic reactions, my spine and shoulders twisting in the wrong ways and I constantly look like a walking zombie. I keep asking myself how people could like me, how I actually have friends when my life and my body is so weird now. Because nothing in me functions normally, my illness is a multi-system so it effects every part of me and my life. The only thing it can never touch is my spirit, the burning flame inside me that makes me who I am. I’m learning to be ok with not being ok and realizing that my broken body doesn’t define me.
It’s ok if I don’t recognize the person i see in the mirror anymore, the person on the inside is still the same. And thats what I’m holding onto everyday, when everything feels scary and too much that it doesn’t matter what happens with my health or however my body changes. Because on the inside I’ll still always be me…