The post hospital shake up
My hospital stint was a real shake up in my life. Being taken out of normal every day life and facing a serious battle was life changing. As much as it was horrid to be in hospital, I think in hindsight it was needed. It was the universe giving me a wake up call.
Sometimes in life the universe throws things at us and you can choose what you do with your experience. I’ve reflected on mine and I believe it’s time for the wheels to start turning. For me to start evolving. It was also a massive reminder to not get so cocky about having my disease under control because clearly it hasn’t been for months. I need to start listening. To my body. To the universe.
So what now? Like I’ve said before I’ve been working on a development plan for myself. In doing the development plan I came to alot of realisations that I will share with you. I need to take a holistic approach to my health. Both lupus and fibromyalgia require total wellness. Mind, body and soul. If any of these things are out of whack, it affects my health. It’s a balancing act that I need to get back to.
One of the things that I am definitely going to be doing is finding ways to draw attention to the plight of people with lupus. I want to go big. If I want to be an activist then I need to act! I have some ideas. I have already started with one. I am going to beg all of you to help me get the word out! Pretty please with cherries on top! With your help I can achieve much more than if I did all of this solo.
I appreciate all of you who come and read my blog. I am humbled by the amount of people from all over the world who read this blog. Thank you. By reading this you are educating yourself and that is awesome! Some of you share this blog. To you I am eternally grateful. I can’t explain how thankful I am that you are sharing my story and thereby doing your bit to raise awareness.
I would love you all to continue this journey with me. My next few posts will be about my evolution. Perhaps you want to follow along and make changes in your life.
I would also love you to be a part of me taking this blog and my fight to greater hights. To help me spread awareness about lupus. I welcome all suggestions!
We don’t have accurate stats on lupus related deaths and so no one thinks it’s serious. If you’ve been on the lupus groups I’ve been on and seen people, young people from the group die it would change your perspective. A death certificate won’t say lupus. It will say heart attack, kidney failure etc. The reality is that those things were brought about because of lupus.
We use a purple butterfly to denote lupus and when one of us passes on we say they have gained their wings. I don’t want people to get their wings anymore. Young women with children. It’s heart breaking. To the point that I no longer go on these groups. I ask myself why I see so few older people with lupus? My doctor told me when he said I needed to go on disability that all he was seeing was me deteriorating. That just made my prognosis worse. Right now I’ll be lucky to make it to 50.
This is why it’s become so important. I thought I was ok with gaining my wings. This hospital stay left me shaken. I’m not ready yet. I am going to fight but without proper treatment there is only so much fighting one can do. With awareness comes research. The strides they’ve made with Cancer is incredible. I want that for lupus. I want to be able to say “lupus can be beaten”. I want to be able to go into remission and have it never come back. For now lupus remains terminal because there is no cure.
I guess this a call to action. This is me asking you to help me. Help me in any way you can. It is all massively appreciated. Watch this space. I/we are going to do GREAT things for lupus!