Friday, February 24, 2012

Driving With Chronic Illness

Driving is something many take for granted. It something from about 12 we look forward to do. Then one day we are finally old enough to get our license, and we are the happiest teen on the planet. When I was a teen running errands for my dad fetching auto parts, and paint where cool. To him it was one less thing he had to do. I just wanted to drive I didn't care what? How? When?
You fast forward to the now so many years later. It's not so much different. I don't care what I drive. How I drive it, and when I do it. Why is this? Well when you have had it in front of your face twice that your driving days are limited.....well you just are happy to go. Just as when you where a happy carefree teen.

The first time I fainted behind the wheel, and had an accident. With my then under 2 year old son in the back. Scared the hell out of me. Not to mention quilt. The I could haves? The what ifs? So on, and so on. That time I was ordered not to drive until my spells where resolved. Even after that I was told to not drive more than 15 miles from home. Mind you that is hard. With kids, and things to do. I felt so helpless. So much like a bum. I had lost my will to et better at that point because I had a husband that on the weekends wanted to go go go. Go on these road trips, and "boony cruises". Even more so to remind me what a failure I was. That I had to be given a ride everywhere. To the dr, the store. EVERYWHERE.

This wasn't easy on a husband who drives for a living. He doesn't always want to drive all night when he gets home. So even though he did it, and allot of times he meant well it wasn’t without complaining. Which made me feel even more terrible. I had told my self I needed to get better so I could drive again, but found myself getting more depressed. Having to rely on others. Then finally as the dr said I could drive again, and I was ready to go back to work some I quickly figured ways to cope. Driving was still hard. It would get worse as time went on. Yet I want to keep hanging on....

Most of all it's independence don’t have much of that left these days. No job. Kids getting older. They don't need me as much. No hobbies really to speak of. Nothing really that I do I get to say I accomplished something anymore. Then you mix all this in with the fact of lack of options. Who else will do it? Haul the kids around? Me around?

You fast forward a few more years, and I have a stroke. While driving down the interstate. Couldn't drive a while again. Truthfully dr never told me I could again. He said he would reevaluate me after therapy, and he never would say really. I just do. No one else to, independent thing, and hubby gets sick of doing it all.

So here goes that worthless feeling again. Only this time the worthless monster brings ne challenges. When I pass allot of traffic if it's sunny it looks like a strobe like sort of. Well that freaks my brain out. Causes me to get chest pains, and a migraine. I hear weird noises they scare me cars driving by to fast or to loud. My brain never did recoop from that from the stroke. So in a car with no ac. This is a picnic I tell you what. I'm very sun sensitive. Even if there are clouds out. If I don't have sunglasses on I start to see floaters, and hazzy vision. Sometimes when I get Migraine Aura I smell things that don't really exist. It's usually burnt rubber is most common. Next are ammonia (cat pee), and gas. So think of the fun when you think you smell a burning hose, and gas? Could be real could not be. My brain doesn't know the 2. So that freaks me out.

Then there is my vision problems since childhood only made worse by EDS. I struggle with both distance, and up close vision as I have as astigmatism. At night headlights look like cauliflower buts yet burn. I can't tell if cars are in the left or right lane when it's dark, and they have their headlights on. I can't tell how fast cars are coming up on me at dark. So I don't for sure know how fr they are away. So I get honked at stop lights, and signs allot. "GOOOOOOO". This makes my hubby furious.

Yet I'm scared to wreck. AGAIN. Scared to not be able to drive. My Fu$%ing brain is shorting out. Right now I have terrible ringing in one ear, and whoosing in the other. Then there is the who will take my kids here, and there. Who will take me to, and from where I need to go?

It just sucks! Yet it's so hard. I would be way easier to just forget it, and hang up the keys?

Then what is there to make me worth while? I just want to feel like me again. The women that people want to get to know. I want people to be proud of me. I want me to be proud of me.

Thursday, February 2, 2012

The Fire Hole, EDS, and POTS

You have heard me say how challenging it can be living with a chronic illness. If you have a chronic illness yourself you know how it is. You throw in something like a stomach virus, and I get hit with a freaking blizzard. Holy Crap Batman. My oldest 2 woke up puking, and also the 7 year old. I thought okay. They all stayed home from school. They had stuff coming from both ends. I ran to the store to get some meds, and making for homemade Chicken Noodle Soup.

I thought 'man I hope I don't get this!' I go about my day. A couple hours later the hubby, and I are in a thrift store, and it hit. My guts started grumbling, and growling. Then there was the I have to fart, but I'm scared to. I might poop myself fear. So I ran to find a restroom. Oh Dude they better have one! They did whew, ans let the fire hole begin. They didn't even have soap. Ewwwwww! I have these little portable soap sheets in my purse for such occasions. Go figure my shoulder was giving me fits so I ditched my 10lb  pharmacy, and emergency surplus at home. Damn must wash properly when I get home! At least they had decent TP. On a real roll. Not the giant roll of you can never get enough 1 ply. Then off to get my son. I hope that doesn't hit on my way home in the car! Guess I do have this virus? Damn Fire Hole.

Then a song came into my head. The massive Green Apple Splatters, and I wanna sing? How does that work?

Great. Just great. A virus on top of my normal sick. Double suck. Triple suck. Suck to the infinity. It's never simple with me. It's never just take Pepto, and it's done. NOOOOOO! There is always can you take that with that? Can I eat that because of my migraines? Does that have lactose in it? Does this react with my other meds? Am I allergic to that? Will it cause tachycardia? Drowsiness? Hype me up when it shouldn't. Never just as easy as shit ten times a day folks. Nope. Never. Okay. At least I buy good TP, and have soap!

Wednesday, February 1, 2012

It's Been Awhile. I Play Like It Don't Exist It Doesn't Right?

It's been awhile since I have wrote a blog. I have been in a rough spot. Not much to say. Oh well I have had allot to say. Just not allot to write. Or the know how to write it on paper, or screen. I guess the point of the blog is to blog the suck, and reality of my life right? All the ups, and downs. I have to ask myself. Am I really ready for that? To put myself out there as such? To have all my business out there? Doing so would let people into my brain, my emotions, and they would know that I'm not always a tough girl. I don't know if I like that or not? When I'm in my non tough girl mode I prefer to hide. To not let others see. I don't like weakness. I don't want other to know my weaknesses. Yet weakness makes us human. Normal.

This illness really takes a toll on me sometimes. It takes a toll on my family sometimes. If people only knew what it was like. Yet you will never know you are not me. I would never ask to take it back or change my life. Nope. Just makes my life so very complicated. However I don't like what this illness does to my family. They shouldn't have to worry about me. My husband should not have to spend his days at work worrying if I'm okay. I was always the strong one. The one that got shit done. I took names, and asked questions later. Now I do good to remember my kids names. 

I don't like the fact in my extended family my illnesses is just something we don't talk about. Kinda like when someone gets the clap, or  crabs. You know they got it, and it sucks. You want  to know the how, the when, and they where? Yet it's like a train wreck. You want to know. To see, but you are to grossed out to look. To ask. That is how I feel most of the time. I feel I have to be fake. I have to play "well" in front of most of them. I'm not allowed to be unwell. Maybe its because I was always so hyper, and full of energy before? I don't know? So it has caused me (and my family) to be very distant from allot of people. They just don't get it. They don't get what I go through. They don't try. Nor do they see what my husband go through. Or my kids. I'm not unique in my story. I can tell you many the same as mine. It happens often in chronic illness. Especially in Invisible Illness. You see because I'm not walking around tinged green, with oxygen, in a wheel chair all the time. I'm not sick right? Or because I'm not 85. I can't be fragile. I'm young. I'm a Mama. I have a husband, a house, and kids. I have blue hair, and wear makeup (sometimes). How could I be sick?

Well look at it like this. Concealer hides nasty blue bags from only sleeping 4 hours. Or allergies. Or hives. Foundation can falsely create some color that most time I don't have anymore. Blue hair well that is just fun. Plus it does distract you from seeing my pale face, my non plucked eyebrows, and how sick I do look. If you really look. Most days. Sure I have good days. Great days, and shit days. Stretch pants are a must because most days I retain about 5 extra pounds of water. Most days I don't wear tie shoes. Two reasons. People with POTS don't bend over, and and my feet are always so swollen most days I can't get them on. So Crocs it is. I also gave my son my tennis shoes. My good pair because his came apart. I can't afford to replace them. No problem can't wear them tie ones most times anyways. 

I have a wheelchair in my room. It took me so much to ask my doctor for this. Why? It meant defeat. Yet when I get a Hemiplegic Migraine, and can't walk a few days I have to have it. Another thing most didn't know about me. Yet I still cook. I still get my stuff done. Just at a whole another level. I have modified so many things because of my fucked up body. Lighter knives. Plastic dishes. Plastic cups. A food processor. A Kitchen Aid mixer. A very light wooden rolling pin. Tiny little forks. Very light hair dryer, and tiny flat iron. I wear my hair short. Down to the clothes I wear. No buttons. No shoes laces hardly ever. I use a grabber to clean. Like the thing you see city workers picking up trash on the freeway. Yep I have one. I pickup laundry. Trash, toys, and anything else. POTS people don't bend down. 

So as you cook, clean, sleep, bathe, dress, eat, or whatever, take a minute to think. What does someone like me have to go through? It's never simple? Yet we troop on. All we ask for is to be acknowledged. That what we do is hard. That we are strong. That we kick ass. That you realize everyday is a fight. Non sick people take so much for granted. So please just TRY to understand what it's like to be me. Or what it's like to live with me.