Tag Archives: Invisible illness

Today is a New Day

It’s been a long time since I’ve written anything.  I’ve been very ill… In bed for weeks. The pain and depression has been unreal, but today I woke up determined to snap out of it.

Thanks to my wonderful husband, who has been so encouraging to me even though I’ve been an emotional crazy mess!

I feel almost as though I’m waking out of a thick fog…

I don’t have much to say, I just wanted to write SOMETHING to make myself feel as though I still exist…

Addycat has been right by my side this whole time, she’s the best kitteh ever!!!
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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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NaBloPoMo Day 2…

I have so much going on in my brain right now, I don’t even know what this post should be about. I want to do a post about what is going on in my country, my thoughts on the government and what serious trouble we are in, but right now my brain fog is making it difficult for me to try to write about such a serious topic.

My day has been fairly uneventful. I just took a shower a bit ago and it made me dizzy and really hot as it does every time.

I want to do some more posts about invisible illnesses. I’ve been doing a LOT of research lately on one specific connective tissue disorder I have, Ehlers-Danlos Syndrome. It’s a very complicated genetic condition with various subtypes. The symptoms are different for each individual who suffers from it. EDS is also related to many other health issues, and I’m finding several people here in the blogosphere who are suffering from several more conditions that I have as well… it’s got to be more than just a coincidence, but I’ll post more about that later, once I feel like I’ve compiled enough information to make a solid and helpful post.

Another post I have in mind is my favorite things from October. This is going to include a variety of items, including a book that I’m super excited to tell you about! I also plan on doing a book review post of this fabulous, newly released book… and not only that, but the Author of the book has agreed to let me interview him!!!

So I definitely have some exciting things in store for you guys this month! I’ve got more ideas in mind as well, but it wouldn’t be any fun if I let you know all of them. Remember… I like to keep a certain mystery about myself!

Oh… I’ve also been making lots of new blogger friends here on wordpress! I’m excited about that, and I also have recieved a few awards that I need to post and participate in because there are some great bloggers I know who really deserve to be recognized, and I encourage you guys to check them out when I make that post!

Ok… that’s it for now. I know this post wasn’t that fun to read, but I’m trying to fulfill my daily post commitment and this is my first time actually participating in something like this. I’m being held accountable to something other than myself!


Things I Need to Get Out

I don’t know myself anymore.  I blame my illnesses, and yes… mostly they are to blame and I have the right to blame them. But part of me blames myself… and others.

I am not strong enough. I used to be the rock that kept everything together, the glue that bound it all up. I used to be strong… stronger anyway. I was very good at pretending to be stronger than I was. I was very good at pretending life was perfect.

Something very bad happened in my life, when I was about 24. It changed me, broke me in every way possible,  chewed me up and spit me out in pieces. I can’t talk about that now. It’s just too much… but it’s important to note that this event occurred.

Perfect life turned completely upside down and inside out. I lost everything… even my very soul.

I was able to pull it together somewhat on the outside after a couple of years, but the person I was before the horrific event… that person is forever gone.

I’m screwed up in the head, you see. I’m worthless… I’m a piece of trash too insignificant for anyone to even bother picking up or even kicking aside. No matter how many times anyone tries to convince me otherwise, I still know it’s true.  Because I’m the one who has to live with myself… it’s easy for someone who doesn’t even know you to try and make it okay with simple words.

I have abused myself in ways I can’t even describe.  Pain… I deserve all the pain… I need the punishment for being such a piece of shit. Punishment from myself,  punishment from others, punishment from my illnesses…

I let people emotionally abuse me. I deserve it. One person in particular really.  The only one I’ve ever let get close enough to me for it to really hurt… to cause emotional stabbing and beating and slicing and scarring… not just a sting from someone who doesn’t matter.

This person really fucking matters and I’m not even sure why sometimes.  I love him. Well, in the only way I know how to love… which obviously isn’t ever right or nearly enough… but still.

The only person who I can never completely push away… always within reaching distance… even though I know in my mind the emotional abuse is very bad for me… but still, I love him and he’s always there for me. Even when he’s not. I know that doesn’t make sense to anyone who happens to read it… I can’t find the right words to even begin to explain what that means or how it feels.

I am on an emotional roller coaster.  He has the controls and I’m sitting in the seat… but I’m blindfolded,  so I can’t see what’s coming next. Is it going to be calm and level?
Going uphill and getting better, more excitement and happiness, feeling high on the world, only to be dropped hundreds of feet and landing there alone at the end of the ride, disappointed that it’s over, that it ended suddenly,  that it hurt so much when it jolted to a stop, but still getting excited because this roller coaster is never ending and my brain can’t wrap around the thought that it is going to end up being the exact same thing every time…

That’s what loving him and being with him is like. Yet I can’t get off the ride. Ever. He has the controls and never stops long enough for me to leave the amusement park. And even if I did leave it, I’d be back. Because that’s where I want and need to be. It’s the only place I feel safe and secure, even though it’s the most dangerous place for me to be.

It wasn’t like this in the beginning of Us. I had a good job and good benefits,  so did he. We had so much fun together. He helped me as I began picking up the pieces of my shattered life.

Then I got sick. So sick. Two brain surgeries and multiple diagnoses later left me unable to work and in tremendous pain. Once again, just as life had started looking good… it ended almost as quickly as it began.

Depression overtook me. Apparently I became an abuser as much as I was an abusee. And I don’t think I even realized it at the time. I just remember feeling numb… nothing… he says I laid in bed for 2 years. I’m sure I wasn’t pleasant. It took a toll on him too… I do remember his abuse… just not mine.

I’m yet a different person now than I was before I got sick. So I don’t know who I am anymore… at all.

I am in too much pain… physically,  mentally, emotionally. He and I live in separate states now… but we’re still together. When he visits, it’s good. When he’s gone it turns to shit and I’m left unable to even talk to him on the phone because he turns into the abuser again.


Things I Collect: Part 1

So I’ve decided to do a series of posts on things I collect.  I collect a lot of different things, mostly because these things make me happy!

Being chronically ill and being unable to do a lot of things I once enjoyed, these collections help fill some of the void I have from being mostly homebound, especially during cold or rainy weather. (Which has recently started where I am… cold and rainy. I’m afraid Autumn weather won’t last long if at all).

I’m going to show a partial collection today, because some of them are still packed away from the move. The most special and unique ones are still in a box, but I will get them out as soon as I am up to the challenge 🙂

So I suppose you’re wondering what this collection is…

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This is a part of my chopstick collection! The best are yet to come, but these ones are pretty cool too.

I actually use these chopsticks a lot… but not as eating utensils (I have regular ones for dining in my kitchen. Those ones are plain and uninteresting. )

These are the chopsticks I use to put my hair up with sometimes, in different ways. One of my fellow bloggers, Anouchka from LifeOfBun, actually asked me to do this post. She uses chopsticks in her hair too, and has a great tutorial on some of her styles here!

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These aren’t technically chopsticks, but I stuck them in here anyway. They are called hairsticks. They are a bit difficult to work with because  their width and my thick hair don’t cooperate. But they are so adorable I don’t mind a little frustration to make them work!

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These are made of a special kind of wood… I forgot which kind, but they came in a set a friend brought feom Japan. I love the shape of the tops!

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These are quite unique and have lots of different colors and textures. I wasn’t able to capture all of their amazingness with my camera…

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These are plastic chopsticks… I love the black base and the colorful contrasts towards the tops. I wear these a lot too.

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These came from an Asian restaurant in Chinatown years ago when I went to San Francisco for a few weeks. I don’t own many clothing items that match these, but I love the gold detailing so I wear them anyways!

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These are one of my favorite sets. They are shorter than most of the others and much simpler to use, plus they are lovely, I think!

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These last two are from the wooden set from Japan. They have interesting patterns. The thing about the Japanese set is that the chopsticks are very long. I wear them on occasion but they are troublesome and I always end up poking myself during use. I really want to use a dremel tool or something to shorten them up, then they would be a joy to wear!

Even though I don’t get out much anymore, I still use these some. Plus I have them arranged in a vase on my nightstand so I can look at them and get instantly happy!

So that’s it for part 1 of my chopstick collection.  I can’t wait to show the rest! Several of them are super old and have history behind them 🙂


Loneliness…

For some reason I woke up feeling very sad and alone. I’m so tired of being a ghost of who I once was.

I know I’m supposed to be positive and think of gratitude… be thankful for what I can do… blah blah blah… but right now, seriously, I just don’t give a fuck.

That might seem harsh coming from me, but it’s the reality of where I’m at right now… and where I’m not.

Here is some music for your listening pleasure… it’s my life’s theme song now.