Here I am again, only 3 days in to this commitment and already feeling like I’m struggling. I think it’s just because I procrastinated writing and now I’m not feeling well this evening.
Might as well use this to my advantage and bring up the topic of my invisible illnesses. Well… not all of them, but the main three. These three and all the rest are all connected. It sucks, and unfortunately I’m finding others through my blogging journey who are suffering with the same monsters.
I have Ehlers Danlos Syndrome (EDS), which is a genetic connective tissue disorder. I was not diagnosed until 2011.
I also have Chiari Malformation (CM), which is a congenital problem with the brain herniating downward and putting too much pressure from the cerebellum on the spinal cord.
In my case, this caused a fluid filled hole inside my spinal cord. I still have nerve damage and some paralysis in my fingers.
I had decompression surgery in 2009 which involved removing a piece of my skull at the base of my head, removing parts of two vertabrae, cutting the protective sac that surrounds the brain to patch in synthetic material for enlargement. This allows the brain to have enough room so it won’t damage the spinal cord any further.
Also, I have Fibromyalgia. These three illnesses have been diagnosed together in many patients with EDS.
EDS also has quite a few subtypes. Some of them are identified by genetic testing. Others… not enough research has been done to give a clear diagnosis. Sometimes the subtypes even cross.
Enough of the boring medical terminology though.
EDS makes me hurt badly in almost every joint my body has. I dislocate joints multiple times a day. When I sleep, my ribs, hips and thumbs usually dislocate and wake me up.
I get lots of bad headaches from the CM. My neck is unstable, partially from EDS but moreso after the surgery.
Fibromyalgia causes multiple symptoms and widespread skin pain for me, but the brain fog is the worst. My memory is that of an elderly person. I struggle with putting my thoughts into spoken words. It gets quite frustrating.
Now my head is hurting worse. I took medicine. It usually makes me sleep
I’ll try to do better with this tomorrow.