Hi guys Short story here If you’re just looking for the question, feel free to scroll down- it is at the end of my tale, hehe!
First of all, I am so thankful for this website and all the knowledge and experience you guys bring to the table in regards to Chiari! I have never posted, but spent many hours researching on here, reading other’s stories, and taking heart that I may not be crazy! The actual symptoms that can go along with this malformation, as opposed to what the drs tell you are “normal” symptoms, can differ so greatly. As other Chiari warriors/caretakers have said, it truly helps to not feel alone! Thank you for sharing your experiences.
I was finally diagnosed in 2019- After beginning at age 10 with what seemed like a heart attack, I have had a long history of health challenges for the past 17 years since (the symptoms finally all made sense after the Chiari diagnoses! ) I almost went home to heaven three times, but God must have a plan for me to stick around a little longer!
I have a 15mm herniation but have opted to wait on surgery, due to my decompression surgery being cancelled because of covid, and honestly not having peace about it/feeling like the Lord closed the door, at least at the time. When I was first diagnosed, my symptoms were then pretty extreme, accompanied with anemia. After 2 years of challenging symptoms, however, for the past 8 months I’ve been feeling almost pretty “normal” most days; at least as far as that goes, right?! It has been a huge blessing, that I’ve improved over the past year, instead of getting worse! Praise God for praying friends and family! I still have flare ups, like this past week, but overall am so much better. I also lead a very active lifestyle on a farm with goats, training dogs, etc. I believe God’s grace, exercise, getting enough sleep and drinking lots of water helps greatly, at least in my experience!
Anyways, here is my question: Is anyone else apprehensive about driving? Car rides nearly always make my symptoms flare up. I finally feel well enough on a consistent basis to now drive again after a few years, but still feel a bit nervous. Others lightheartedly tease me that I’m being overly cautious, which they’re probably right I’m just a little concerned I won’t be able to focus on so many things at once, and the thought of making a mistake and causing harm to others is terrifying to me. I find it difficult to explain to others why driving again may be a challenge. One of my issues is that the headaches can come on so fast, that I’m worried I will kind of “freeze up” with pain. Anyone else struggle with being afraid of/or experience brain fog or flare ups of other symptoms while driving? Anyone have any suggestions as to what may help?
Thank you friends! I know this can be a super rough journey at times. Praying