Falling Asleep On The Job

No one plans to fall asleep on the job. But lets face it... It happens.

And as you all know, I'm an at home mom. So I'm ALWAYS on the job.. And falling asleep during the day is never a good thing here. Unless my kids are gone and I'm alone. Which is basically never. 

However.. I can't lie and say it never happens. Not that I plan to take a nap or anything. I don't. I know my children are insane and shouldn't' go unsupervised. They find the strangest things to get into when I'm not looking. Or they fight with each other and then hit each other and then complain about it. Ridiculous. 

Sometimes though, I can't help it. Not like "I am so tired that I just let myself fall asleep for a few minutes" can't help it. But like full on, for real, can NOT help it! I will just fall asleep for who knows how long and I'm totally unaware of it even happening until I wake up on the couch, with or without drool on my face. (Yes, I'm a drooler.. I hate it but I can't do anything about that so whatever.)

Sometimes, it's only for a few minutes. Sometimes though, it may be an hour. 

It is partially due to my "possible" narcolepsy (I say possible because I didn't finish the testing, but my sleep study doc was pretty sure I have it, and honestly, so am I). But it also a result of my blood pressure bottoming out.

The latter of the two really worried me also. It happens randomly, no warning or anything. Just all the sudden, it plummets. And no one knows why. Spoooooookkkkkyyyyy. 

It's really frustrating though, and I wish I knew the answer. I feel like shit when it happens, get dizzy and nauseous, and everything in my body feels REALLLYYYY heavy. Like even thinking of moving is impossible. 

Then, I may or may not pass out. No one likes passing out, of course... But honestly, when I do, I wake up after my blood pressure has normalized so I don't have to feel like shit anymore. 

So it's kind of double edged sword. Stay awake and feel like ass, or pass out and wake feeling better. 

I am suppose to be wearing a heart monitor right now (for 30 f***ing days!!) but had to take it off early because I'm allergic to it. (Which is a whole other story. My skin is peeling off now. It's bad. But you can read more about that here How Do You Not Understand. )

So since I had to take it off, who knows what it found or didn't. I don't even know if whatever is going on with my blood pressure is even related to my heart rate or not. But seriously, something needs to get figured out.

How am I suppose to function when I can't function?! It's not even JUST the blood pressure (even though, that is one of my most debilitating symptoms) but I also can't stand or walk for long (roughly 5 minutes) periods of time because then I can't breath anymore. I have to sit back down or squat. And anytime I squat and stand back up, I get lightheaded. 

My life is so fun! Hopefully I can get some answers soon. But as of now... It's not looking likely. 

Anyone suffer from random blood pressure changes, narcolepsy, or passing out on a regular basis? Are you working or unable? How do you cope with it? Comment below! 

I'm Angry With You...

I'm angry that you're broken.
That you're falling apart more each day.
That you need pills to survive.
That you don't work the way you should.

I'm angry that I can't control you.
Not the processes you can't perform.
Not the processes you can perform.
You are stupid and broken.

I'm angry that you won't get better.
That you can't get better.
That I can do nothing
But watch you break apart every day.

I'm angry that you're stubborn.
That you haven't just given up already.
I'm angry that I'm trapped in you.
That you keep pushing on when I just want to give up.

I'm angry that I can't away from you.
No matter how much I wish to
I'm stuck. And you smile.
I'm angry that you try so hard.

I'm tired and I want to be done.
And I'm angry that you won't give in.
Just when I think enough will finally be enough,
You come fighting full force.

I'm angry with you.
But mostly,
I'm scared for you.
Because in you, there is me.
And without you,
As broken as you are,
Where would I be?

Are You Defined By Your Disease?

Ah. The age-old question... Well, maybe not age-old. But whatever. 

I have heard many people answer this question with, "No. I have EDS but EDS doesn't have me!" That is fantastic. Right?! So optimistic and such. 

But I totally disagree.... I know what you're all thinking.. What do you mean!!??? How could you NOT feel that way?! 

I feel like I have EDS and it does have me! I know it sounds crazy. Why would you want your illness to define you? Why???? Because it DOES define me!

It isn't all of me. But it is a huge part of me. I am sick. Just like I have brown hair, and brown eye. Just like I'm intelligent and sarcastic and creative. Just like I am a women and mother. 

I am defined by my illness. And that is perfectly fine with me! I don't see my illness as a bad thing. Just a part of me. More like a weird quirk or something. 

Being sick, chronically sick, means I can't just back away from it. I can't get away. And it doesn't just affect me. It affects everyone I know and love. It isn't something can be ignored or something I can beat. It's something I have to work on everyday and sometimes, something I really struggle with. 

Saying it EDS or Chiari, or any of my other diagnoses doesn't have me is like denying how important and severe they are. It's like minimizing the issue. 

And why minimize it?! It's not going anywhere!

I AM defined by my illness. But that doesn't always mean that it's a bad thing.

It is actually pretty liberating. I LOVE talking about EDS and spreading awareness. I LOVE talking about the things I struggle doing because it's REAL! 

I am not the kind of person to sugar coat or lie to make someone else feel better. I like the kind of people that can tell me things no one else will.

Like when I was pregnant, people tell you all the good stuff about being a mom. But what they don't tell you is that sometimes it just sucks and its hard and you'll lock yourself in the bathroom and cry because you just don't know what you're doing and you just know you're ruining your kids lives.  

People don't share with the bad stuff. Like it makes it less real.. But then, when you feel those things, you think you're defective because "no one said it would be like this! I must be a terrible mom!" 

But everyone struggles. It's hard. And we SHOULD talk about those things! They are important!!!

I think it is important for everyone to know our struggles as chronically ill people. They take things for granted that we can't anymore. 

I have been given a lot from being sick. I learned things about the body that I never cared about before. I don't take my life for granted. I don't take my good days for granted. The times I am able to get up and actually do something, I DO!!! Because who knows when I'll get another chance to do it?! 

I am blessed because I'm sick. I fully embrace it. And I think everyone should!

My illness does define me! I am sick and I am proud to scream it from the rooftops!

Are you defined by your illness? Comment below! 

A Full Time Patient And Parenting

Being chronically ill changes everything! Before I got really sick, I worked full time, was a single mom, and a student. I thought I was like a super mom.

Now.... Well.... Now I'm different.

I will see all these great mom blogs and facebook posts about all these moms coming up with awesome and super creative activities for their kids. Or all those delicious yummy treats that are kid friendly to bake. You know the ones. Like making Frozen themed ice castles or the chocolate dipped bananas with all the crazy toppings or the arts and crafts for mothers day or just to do during "down time" on a Monday evening.

I don't know about any of you. But seriously!? How does anyone have the time or the energy for that shit?

Either I am doing a terrible job with managing my time, or those "moms" are lying... Or maybe aliens (most likely this one). I have enough trouble with remembering how to do normal activities. Much less coming up with new and more energy sucking ones.

Being a chronically ill mom is a really hard job! I love my kids with all my heart, but now I am planning activities around my energy levels. Sometimes, it's just a hot dog and watermelon for dinner. Sometimes I just have to lay down and do nothing for a bit and my kids will be bored out of their little minds, but they have to entertain themselves. I just can't do it all!!

And you know what? I feel GUILTY! SSSSSOOOOOOO GUILTY! I feel like I deserve the worst mom of the year award. I want to do more with my kids. I would love to go back and be the mom I was before I got sick. But I can't. I'm stuck in this crapola body, and I just can't go like I use to.

I feel guilty for not being able to give my kids all they deserve. I feel guilty that I am sick. I am a sad that my youngest may never know the me before her. I am sad that my oldest had the me before, but was too young to remember. They will never know the before sick me. And that makes me sad. I am angry that I can't be all super mom and make all the awesome arts and crafts and snacks with my kids. I'm angry that I have a hard enough time following simple instructions myself (thank you Chiari) so I have little patience when trying to bake with them. I am angry that I get so frustrated with myself and my limitations. I am heartbroken.

But I do the best I can. I try and try my best every single day. I have my bad days, and my better days. But every single one of them I am busting my ass to be the best mother I can be to those beautiful little girls.

My kids know that I love them. They know that I'm sick. They know I try and sometimes I fail. But sometimes I make it. And those times, seeing my kids light up while we play, those times make it all worth the struggle. I love those crazy girls!!

So I may not be the best, but I try my best.

 I'm their super mom. :)

What's Wrong With You?

You're too young to have so many problems.
Why do you only use a cane sometimes?
What did you do to yourself?
Ya, I get tired too.
You should push yourself harder.
You're just being lazy.
You're not trying hard enough. We all get tired.
Are you just looking for attention?
*stares stares stares*
You aren't handicapped. I saw you walking just fine a few minutes ago.
We all have problems.
It could always be worse.
Well, what are you doing about it?
You complain about everything.
You seem depressed.
Maybe it's just anxiety.
I think you're just a hypochondriac.
Gosh, what can you do?
You should try taking *insert "miracle drug" here*. My friend had that, and it totally cured her.
I know someone with *xy disease* and they can still do ....
You were fine yesterday...
You're just using that as an excuse to do nothing.
If you really wanted to, you'd get better.

If I had a dollar for every time someone said these things to me, I would pretty damn wealthy! People I don't even KNOW!!! Total strangers have asked me "What's wrong with you?" or "Why do you have a cane?" "What did you do to yourself?" "You're too young to have so many problems."

Well you know what people!!??? Apparently God doesn't discriminate against age! How can I be too young anyway? What the hell does that even mean?! Like only old people have health problems? I'm sorry, but I'm pretty sure kids, teens, and young adults get sick all the time!!

There was one time, I was watching a movie about this person that has a disease. The person I was watching  the movie with (at that time though I was not diagnosed yet and they thought I was a hypochondriac making up all my symptoms) and they asked me, "So, are you gonna start having those symptoms now?" I'm sorry, but WHAT THE FUCK???!!! NO. I have the symptoms I have asshole.

People without chronic illnesses just really don't understand it. It's really hard to get it across to people too. Without ever experiencing it, how do you explain the fatigue is not just "I'm tired and a nap will make me feel better." People can't relate to things they don't or haven't had any experience with. It makes it incredibly difficult to share with family and friends the things we go through. I often feel shame for the things I can't do anymore, or the times I can't even think about doing whatever activity, much less actually do it. Shame and guilt are some of the biggest and worst emotions I feel because I am sick. I also get resentful. But the resentment is usually misplaced. For example, I'll get angry with someone because of how I think they see me. (Which is usually not a good perception at the time I'm feeling this way.) But that anger is really created based on how I feel about myself.

Having a chronic illness is like continually going through the grieving process. I go through all the phases. Over and over and over again. I will get angry about it. Then be fine with it. Then be sad about the things I've lost. Then be indifferent. Then angry again, and I go back through the steps over and over.

But you know what? I am grieving. I'm grieving the life I thought I would have. The life I wanted to have. The things that have changed. The things that I can't do. Everything. Everything has changed.

I'm not always angry though. Being sick has giving me so much. I don't take things for granted anymore. After losing many normal functions, I really don't take for granted balance and coordination. Things I never thought about before, but now I have lost. So when I have good days I am incredibly thankful for those things. I have also met amazing people and actually my best friend is someone I connected with because I got sick. Then we realized how much we had in common and our relationship just took off! She is my friend soul mate. I love her and am blessed to have her in my life. I also have more understanding and sympathy. I don't just to conclusions and judge people like I did before.

Of course, I do still get angry. But I have gained a lot. And honestly I am blessed. I am a broken bodied beautifully messy imperfectly perfect person. But I wouldn't change myself for anything.

What are things you've been told by others that just don't understand? Do you all go through the grieving process over and over? Please share by commenting below!