You were just diagnosed with a condition that you wanted to know more about. Maybe you’ve entered that condition into the Google search, and you don’t know where to start. Maybe you read a blip, and you think you have all the answers.
When my Chiari Malformation couldn’t be overlooked, I had to do my research on the potential surgery ahead of me.
When I’ve mentioned the surgery to a few people, I was hit with some tremendous support, some people who didn’t care, and some even responded:
“Seems like a straightforward surgery.”
I offered up the basics of my conditioned, and some couldn’t be bothered to look into it while others dug as deep as I did because they knew this was a big thing.
In that research, I found so much help on the matter, from websites to videos to personal experiences. I promised myself I would be an endless source of information if anyone asked.
I started this blog to shift FUEL MY WELLNESS to be more than it was. The scope was small then on Facebook. I needed it to be more.
I suppose it was part of the grief process. I used to think it took so much from me, but oddly, it gave me so much more.
It’s hard to explain. Maybe in another post.
Be A Resource
I’ve been on discussion boards myself and knew how much they helped me. People who were suffering as I had were there. We could get more answers from those experiencing different aspects of the diagnosis and present it to our doctors. Some people found comfort and hope.
I wasn’t crazy.
I came across a post today. They explained a little on their overwhelming situation and wanted to know if the issues got better on their own.
Here’s a bit of my response and more on my experience.
Hey, the first thing I have to say is RELAX. Stressing yourself out can, in fact, make the symptoms worse.
As for getting better, I went in waves at first. In hindsight, I think it’s always been an issue that never really got better. It just got masked into something else.
In 2020-2021, there was a huge shift. I was in pain and had horrible dizziness constantly. I couldn’t drive or ride in a car without the world going off its axis, and I wanted to vomit every minute of every day. I didn’t feel safe leaving the house on my own and could barely stand on my own. I followed marks on the ground to keep me “straight.” I looked like I was drunk all day. Laughing too hard, reading, coughing, just moving – it all hurt in some way. My communication skills were so limited. I was on a delay and could hardly follow a thought for too long. Writing was a nightmare. I love words, and those weren’t there.
I don’t want to scare anyone with my experience.
It is just one experience.
Unfortunately, Chiari was overlooked in my case. I had to see a specialist in the field for there to be a real understanding of what I was going through.
You are ahead of the curve, but take it slow and don’t overwhelm yourself. A strong support system is important. If you don’t have it, find it. Advocate for yourself and be honest with your doctor. Pay attention to the paperwork of your appointments. Make sure what needs to be in there is there.
I have memory issues I’m working through, and sometimes, I have to read through old notes and texts to get some sense of everything.
Do what you can to understand what can make things worse. I couldn’t exercise, so I had to pay attention to my food and made the most of any movement I pushed through.
You’ve got this!!