Something has been asked about me, more recently this year than ever before… how do you live a regular life after ITP? How have you gotten past that initial, OMG I could die feeling?
Warning - Long post ahead!
It warms my heart that people have noticed my effort but it was not by the hand of just waking up OK. It’s taken deep searching and finding peace to be in the space I’ve been currently in.
When I was first diagnosed with ITP it was life changing. This is a rare disease that they had NO clue how I got it, they had NO cure for it, they couldn’t tell me HOW to improve it, and there were NO real answers. Learning that I could bleed out in any situation was TERRIFYING. It took me to a dark place mentally. I mean, let’s be real, it’s not that I was an extreme sport enthusiast to begin with BUT knowing I couldn’t if I wanted to, was crushing! The thought of a car accident on my commute to work. Cutting myself while cooking dinner. Not being able to fly on a plane!! What the heck! I fell into a depression. The heavy medication made it THAT much worse. I became isolated, scared and ANGRY! Angry at this damn disease that was taking my life away from me.
I was woe is me for awhile but then I had some good months. I had some stable and healthy months. In those months I realized, ok - this isn’t so bad.
We all know 2020 was an insane year for all of us. Add the fear of a compromised immune system on top of it, it was even scarier. I spent a lot of time at home as we all did.
In 2021, I made the decision to not let ITP control me any longer. Yes, I have this disease. Yes, life is different… but it’s not over. I started some DEEP personal work with my therapist. I started looking inward at myself, my intentions, my fears, my hopes for life. I changed my mindset (over time). I was finally off steroids so I took it as an opportunity to focus on my nutrition and my health. To figure out my inner demons, to get my body moving more, to find ME again.
Having an incurable illness is very similar to grief. You’re grieving the life you had before this crazy thing took over your body. You go through all the same emotions… denial, anger, confusion… eventually acceptance.
At the beginning of 2022, I had gone a few months without a relapse and I decided to expand my mind and soul. I dove head first into yoga, wellness retreats, self reflection, spirituality and trying to find my purpose. Learning that I have ITP but it doesn’t have me.
On my self discovery journey I’ve been trying to be a support for others. To help advocate for those who feel stuck. To offer an understanding conversation to those who are lost. To be an ear when life just gets to be too much. To be safe place for people to just let it out. Learning that our doctors may not have the answers but we still have a voice. I try to encourage everyone to seek the care you so much deserve and should receive!
It’s been a freeing feeling to become fluid with my disease. I’m also VERY fortunate to not have had any issues recently. I do contribute my healthy changes to possibly doing better… learning how to manage stress in a healthy manner has been HUGE, fueling my body with foods it needs versus wants, creating a positive headspace for me to deal with whatever life throws my way. Finding peace amongst the chaos. The calm within the storm. I have that power. I have that control.
Don’t get me wrong.. I still get anxious before blood work. I still get nervous when random bruises show up on my body. I do worry… just much much less!
You cannot control what happens to you BUT you can choose how you respond to it. You can choose to not let it take you down. Choose to not let it control your life. Choose YOU! You’ve totally got this friends!
Side Note: I have made many friends with ITP. It’s the positive from the negative. A lot of these friends have Chronic ITP and live with low numbers every single day. They sit through hours of transfusion therapy, days of medication, constant blood draws and having ITP on the forefront constantly. These are some of the STRONGEST individuals I’ve ever met. No one case is the same so what helps one doesn’t always help another. However, they are warriors! I’m so grateful to be apart of their journey.
In every situation I think it all comes down to how we respond. If I can encourage you, try try try not to let it take away your joy. Try to live as normal as a life as possible, safely 😉 I assure you… you can still enjoy life with a deadly life threatening disease!
Stay healthy my friends! Keep chasing those platelets and enjoy life’s speed humps! They’ll always be there! 😉
Enjoy this life we are so graciously given!
I’ve also been doing some work with a couple AMAZING organizations that help advocate and educate about ITP. Here are their links but I’ll make a separate post in more detail about them 💜
Platelet Disorder Support Association
Picnic Health
Just for fun… here is how I’ve been spending my last few months! YOLO!!!
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