NaBloPoMo Day 3

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.

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About Eli's Mommy

I am a mother and a kitty cat lover. I'm a little girlie and a lot geeky. I would do anything in the world for my children. I've been described with many words, ranging from compassionate to mysterious. I suppose I am a complex person, an old soul from my birth. There is a depth to me that no one has ever come close to experiencing, and probably never will. I wanted so much to become a nurse. I've always wanted to help others. Unfortunately, my life took a very different path. I have a lot of health issues which have left me disabled. That won't stop me from helping other people whenever and however possible. Please, please follow me. You won't be disappointed, I promise! View all posts by Eli's Mommy

4 responses to “NaBloPoMo Day 3

  • katiclops

    Oh my goodness, I really hope you’re feeling better tomorrow!
    I took several days off work this week too, but just for an awful head cold: it totally makes writing so much more challenging! i think I spent about three hours composing a 500 word email…May you sleep well…10% through NaBloPoMo already!

  • malia

    hope you’re feeling better soon! my sister has fibromyalgia, so i’ve seen the toll it takes. but with the other things you have to deal with, i can’t even imagine. yikes! take care!

  • rarasaur

    Oh my gosh, the cat picture was amazing. 😀 I’m sorry that you aren’t feeling 100%– here’s hoping tomorrow brings bright happy moments!

  • Owls and Orchids

    I congratulate you on going for the NaBloPoMo… if I ever get that right it will be a miracle. I know how you feel about the overwhelm of the challenge. I used to think I was never at a loss for words but… sometimes the fog is too thick. Good luck and take care of yourself. Thanks very much for stopping by my blog. I truly appreciate it. Susan x

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