Yes I Have Bad Days!

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I am generally a positive person. I am well rounded, and most times I make the best of any bad situation. I am one of those people that sees diamonds in the rough, and treasures in the trash. I generally see the good in anyone, and any situation no matter how much it sucks. I like to laugh, and be positive. I choose to see the good in life. Even though I may be sick. I choose to find the good in my illnesses, and laugh about it. Yes there is good things about illness, and yes you can find things to laugh about. I just happen to have many things to laugh about.

I choose to flip the bird to people that whine, and are mad all day. People that let their illness consume them. People that can’t have a positive attitude, pull up their Granny Panties, and move on. People that think they are better than me. People that have lost the will to fight. People that are pricks. People that are mean to dogs. Prejudice people, bigots, and hateful folks. Don’t get me started on those twats that forget their kids in hot cars. The ones that forget their babies but not their cell phones. No Sir don’t get me started on those turds. I don’t have enough middle fingers, or a big enough stick for those folks!

The people of illness are no different than people in general. You have your people that are pist off about it. People that are indifferent about it. People that are thankful for it. People that do good despite illness making it hard to do so. People that are happy about it. Fighters, and people that never give up. Some people in the illness community amaze me. Some leave me stunned. With me yelling “WTF are you thinking?!” We are people all the same, and have many differences. Everyone is unique in the way they handle their illness. We only share some things in common. We share diagnoses, symptoms, doctors, and opinions. We are each unique in the way we’re created though. We cope with illness in a unique way. The same as life in general some cope well, some don’t, and many do a little of both depending on the day or certain situation.

Sick folks have lots of extras in our lives. Extra names assigned to us. Extra shit to carry. Extra things to remember. Extra places to go. Extra burdens to carry. Extra bills to pay. Extra creepy people to watch out for. Extra precautions to take. Extra dietary precautions. Extra medications to take, and lots of extra emotions. Those emotions come from all the unwanted advice from others, asshole doctors, careless family members, partners that grow tired of our illnesses, and the extra burdens we carry. Burdens of all the should haves. I could haves. The I need to. The I forget to, and the I didn’t do. I have many burdens I carry each and every day. Yet still I FORCE myself to be happy!

If I get an apple with a bad spot on it I cut that piece off, and consume the rest. If I cut my finger doing so I slap a Band-Aid on, and move on. Band-Aids make everyone feel better! Especially ones that are pretty! Well they did when you where 4 why can’t they now? I view life the same way. By getting rid of the bad in my life the good will shine through. If I have a bad day, and feel like hell I tell myself “well I am alive, and I woke up another day.” It’s not bad! Things could be oh so worse. Like I could be dead. But I am not so I will be happy about something. If I don’t get all the things done I wanted to I pat myself on the back for what I did get done. Don’t laugh I am super bendy and I CAN pat my own back. I can also itch it all by myself. This is just how I am. Most days this good attitude serves me well, and helps me fight day in and day out. But then there was that one day. This one time, and it wasn’t pretty!

What happens when the happy-go-lucky person is NOT so happy-go-lucky? What happens when all is doom and gloom in my neck of the woods? I would be a liar to sit here, and tell you people that I am happy 24-7. That I never cry. That I never get pist off. That I never want to place blame on others. That I don’t get down. That I never feel lonely. That sometimes I am not ashamed. It would be a huge lie to say that at times I am not an asshole.

Sometimes I say things I regret. Sometimes I get downright tired of being sick. Sometimes I loathe taking medicine, having a special diet, and all the other special crap I have to do. I get angry I can’t always do what I want to right when I want to do it. Sometimes it sucks always having to have a well thought out plan to go anywhere or do anything. I am not always right about everything. Sometimes I suck at being sick, and feel like a failure. I have days I miss what I could be doing that I can’t do any longer. Being able to do whatever I want right in the spur of the moment. I miss what I could do before. This happens to me! Anyone whom says is does NOT happen to them once in awhile is full of all things brown, and stinky. With tiny specks of corn, and Kiwi Seeds.

It’s okay to have a bad day. What is NOT okay is to have a bad day everyday. You have a choice to make your day a good one or to go ahead and let it be a bad one. Bad days keep us grounded. They remind us that life is not all candy, ice water, unicorns, rainbows, puppies, and kitties. But good days keep us going. They give us the will to keep fighting. To deal with all the stupidity we face in life. To not slap rude people, and to make good choices. To laugh in the face of all our hardships. Good just feels BETTER! But bad is necessary too, and yes even I have a bad day sometimes.

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I feel people expect me to always be happy, carefree, strong, and funny. They look to me like I am some wise Yoda that always has a joke to tell, and a laugh to share. That I know all there is to know about EDS, POTS, and any other illness. This is an expectation that comes with big shoes to fill. Big HUGE Ronald McDonald clown shoes. It’s not going to happen people! I wear a size 3 shoe. A 4 at best, and a 5-6 sometimes because it’s the smallest fattest shoe I could find on the clearance rack. I cannot walk around filling your giant clown shoes people! I cannot be what I am NOT! Sure clowns are funny, cute, vibrant, and make you laugh. Some can do some pretty amazing tricks too. But so far the only magic tricks I have accomplished is to light my own fart. I have since been able to repeat this trick of magical wonder but hairspray will light a campfire. As a teenager once I packed 10 people in my Trans Am. The cops did not giggle with delight the same as I did at the circus when the clowns performed this stunt. Lets not forget though clowns scare the shit out of some folks. The sight of a clown makes many grown folks run away screaming “MOMMY” like a fearful 4 year old. Not something I want to portray! I don’t like to scare people unless they are doctors with bad attitudes. That deserve to be made to poop themselves.

I will keep on keeping on. I will keep on being happy. Seeing the good in all the bad. Counting my blessings. Thankful I woke up today. Appreciating all my friends and the family that accept me. Completing random acts of kindness. Being polite to strangers. Being the Mama my kids deserve. Being the friend my friends need me to be. Being a good partner to my hunny. Writing blogs to uplift you. Taking pictures to please you. I will do so with a smile on my face, and a joke in my brain. A joke just waiting to be told. I will be a laugh waiting to share it with you. Plotting my good deeds.

Then there was this one time……..the one thing happened to my cousins, neighbor, uncles, friend, bosses, baby daddy. Then he said, and she said and well it all just escalated form there. Then I heard “hey y’all watch this, and dude please hold my beer!” It wasn’t good folks!

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Don’t mind me I will just be over here mumbling many words of profanity under my breath, and saying many out loud. Plugging in a movie so the noise of my kids won’t make my head explode. Today the “Mom Mama Mommy Mother!!!!” Is overwhelming to me. I am sitting here in my messy house. Eating whatever someone else cooks for dinner. Alongside my dog that farts. With my hair a mess, and my armpits a little rank. My legs are hairy, and my feet are dirty. I am feeling lonely and pist off! No one loves me. Everybody hates me. Guess I’ll go eat worms.

I am mad that illness costs so much money. Mad because it’s to hot for me to be outside today. Pouting because I would rather be at the river, but mad I don’t feel like going. Plotting…. Plotting all the ways I can be mad. All the people I can be mad at. Tallying up all the doctors that have done me wrong. Taking note of the family members that have turned their back on me, judge me, talk about me, and don’t like me. Missing the many friends I’ve lost over the years. Counting all the times I’ve been lied to, and all the opportunities I’ve missed. Making a list of all the things I DON’T have in my life. Ehlers Danlos Syndrome sucks! POTS blows! Mast Cell is like furry, stinky Donkey Balls! Intracranial Hypertension steals candy from babies, and Chiari is an asshole. My shunt is like a fat lady going through menopause. Everything is like fruit. The fruit no one eats soon enough and it attracts fruit flies. No not flies Dung Beetles. That’s it! Because all these illnesses are a bunch of HORSE SHIT!

Oh look a unicorn! A unicorn that is offering me a giant bag of Skittles. What’s does that sign he’s holding say? Free puppies and kitties? Don’t mind me. It’s been one of those days! Join me on my Magic Carpet Ride! Want some Skittles and ice water?

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Dirty Little Secrets

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I have been asked many times, and I’ve even asked others many times myself “What’s your fears?” That question goes hand in hand with the question “What are your hopes, and dreams?” They go together like peanut butter and jelly. Like ham and cheese. Milk and cookies or like southern folks and the saying “bless your heart!” Most of the time when people want to know your hopes and dreams they also want to know your fears. Not always is this the case though. Sometimes they can be separate. The same way I don’t like cheese on my ham sandwich, and my son likes only jelly on his. But alas I am sure you have got asked this question before, and if not you will. At some point in your life you will. When you’re sick it seems it comes up even more.

How would you answer? Everyone has fears! Even people that are not your scared types. I don’t know anyone that doesn’t have some fear of something or someone. Some people fear way more than others. Some people have more intense reactions to fear. For some fear brings about crippling reactions. For some it’s nothing more than “oh that scares me.” But you would never think they act scared. They are scared all the same. Some have many fears, and some only have minimal fears. Having fear doesn’t make you weak, and it doesn’t make you crazy.

For me fear never has been many things. My whole life I’ve been scared of turtles, and horses. If you where to see me around them now in my adult life you might not even notice. That’s because I have overcame many of the fears. Well somewhat overcame my fears. Not totally overcame them though. To get on a a horse still requires much self talk, and calming myself down. Fear, and horses don’t mix. Horses can sense your fear, and they act on it in a major way. But some fear still remains, and even being around a horse takes work for me. I don’t think I will own a pet turtle anytime soon. Those things just freak me the hell out! The way their head pokes in and out. However I do have a horse.

Fear changed for me when I became ill, and with illness it brought all kinds of new fears. Fears that are much more complicated than turtles, and horses. Fears that takes the wind out of my sails, and sometimes kicks me on my ass. Fear that shows so much so sometimes that it also scares my family members. These illnesses have also created fears for my family that was not there before. THIS makes me sad. I hate that I cause them to have fears that they did NOT HAVE BEFORE! I hate that I cause them worry. Most of these fears are felt by my hunny. Then also by my oldest children. They fear what will happen to their mother? My hunny fears many things, and this makes me sad. Very sad, and makes me feel very guilty. He tells me that he fears I will not wake up one morning. This eats at my soul! This shouldn’t be something a young couple should have to fear!

What are my fears you may ask? I will give you a cookie if you can guess! But if you have a chronic illnesses I can almost bet that know what I am afraid of. I can almost bet right now that you’re nodding your head, and saying “YEP! YEP I can totally relate to that.” I know that my fears are those of many folks that are ill. I know that I am really not that unique in the things I fear. But that doesn’t make it any less frightening. It doesn’t make it any more easy. It doesn’t being you much confront when you’re alone, and scared. It doesn’t hold your partner when they are scared out of their wits. It doesn’t help my normal friends and family understand me any better. It doesn’t help me NOT be afraid any less. It doesn’t comfort my hunny that nothing will happen to me.

What are my fears you say? I will tell you my fears, and I hope by sharing my fears it will help many of you know that you’re not alone in yours. I hope it helps you know that you’re NOT wrong to fear these things, and that maybe it will help your family know that are not being dramatic. That you’re not asking for attention. That you’re NOT playing games, and that you’re NOT crazy. And you’re NOT any different from most people that have a chronic illness. You’re NORMAL in the chronic illness world, and here in this world you’re like many others. You’re NOT a dramatic, attention seeking lush here. Oh no here in this world you’re THE NORMAL! You’re like many others, and you fit right in among the crowd here. And here in this world we have legit fears. We have reasons to be scared, and we’re NOT wrong for it.

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I am scared of dying. I am scared of leaving this world, and NOT having everything prepared. I worry that my family can NOT pay for it. I worry that my kids would be without a mother. That my hunny wold be without someone to hold at night. I worry that he will have to do all the things parents do, but that he would have to do them alone. I worry that he will no longer have someone to say “remember when?” To share the memories of when our kids talked, walked, rode their bikes without training wheels, got a boo-boo while climbing to fetch the cookies we hid from them, and I worry if he can go on without me. I worry what life will be like without me in it. I worry that maybe he couldn’t do everything we do together alone. I worry about who would help him if I left this human world? Who’s shoulder would he cry on? Who would hold him, and listen to all his fears. The things I do now? Who would kiss my kids boo-boos? Who would bake them cookies, and make their favorite Birthday Cake? How would he pay for a funeral? How would he even plan a funeral alone? But that’s not all! That isn’t my ONLY fear. Oh boy are their many more!

I worry that my family may grow tired of me. That they get sick of having to care for me. I worry that they will grow sick of their house not being spic and span, and not always is there a dinner waiting for them. I worry that they will grow tired of me because I can no longer play with them everyday. That I lack the energy to be Super Mom. I worry that I am not the best wife that I could be. That I am not the best friend I could be. That I am the lame sister. I worry that people will grow tired of me. I worry they will get angry about all the events I miss, and the things I can no longer do. I worry that love isn’t enough.

Love can conquer many things. But can love conquer all the complications that illness adds to it? I am a dreamer, and I always see the good in others. So much so that many times this backfires, and I get hurt by it. I always assume people are good, and want to do good things. Meanwhile they may be the most mean, and corrupt people. They do things that hurt others, and sometimes I sat there in disbelief. In my mind everyone is good, and intends to do good things. I worry about the burden I place on my family and my hunny. I worry because when we met I didn’t have all these health issues. I could do much more than I can do now. Am I letting him down because I changed? Yes I know the whole “In sickness and in health thing” of marriage vows. But we wrote our own vows and we didn’t promise this to one another back then. Sure we promised one another forevers, and always. But………..what if? What if love is no longer enough?

Is love enough? Is that enough to patch the wounds that illness causes. To sooth his heart when I am an asshole because my pain is so great. Who can comfort him through his own illness when I am to sick to do so? Who will make his favorite supper when I am to sick to. He says that it’s okay that I don’t. But does he really mean it? No amount of beauty, and no charm can soothe the heart of your lover. Even the most beautiful person can be ugly. The best marriages suffer sometimes. And illness is like an ultimate test. A test that offers no grand prize, and no all expense paid trip to Hawaii. Some win, and some lose. Some play because they feel they have to. They feel it’s the thing to do, and they are obligated to do so. Is my hunny only remaining because he feels he has to? Or does he stay because he chooses to?

What happens when one grows tired? What happens next? When will it happen? Or will it ever? This fear is one that is very overwhelming, and at times feels like an elephant on your chest! What do we do about these fears? Do we sit around, and worry about them day in and day out? Do we plan on the “what ifs”? Do we make an exit plan “just in case”? Or do we put it all aside, and just live our lives? Be happy, and live? The choices we must face day to day. The choices we face when we’re are ill? The guilt we feel. The burdens we carry.

I can’t tell you how to live your life! I cannot tell you what to do, and when. I cannot tell you how your life will play out. I also cannot promise you that your life will be all puppies and kitties. I cannot promise you that your lover will never leave you or that your family will always understand you. I cannot promise your doctors will always be kind, and that your illness will get better. I cannot promise you friends won’t grow tired of your and leave your side. I cannot promise you everyday that you will smell the roses. That things will always be easy. In fact what I can promise you is that at some point you will get hurt. That you will likely have bad days, and that some doctors are going to be pricks. I cannot promise you a Rose Garden. In fact my gardening skills suck!

What I can promise you is this! I have fears, and that it’s okay for you to have fears too. It doesn’t make us bad, stupid or crazy! It only proves we’re human. We have feelings that humans feel, and we cannot always control what or how we feel and when we feel it. It’s okay to be scared, and it’s okay to have fears! What I can tell you is this. NEVER STOP living your life because you’re scared! Let that fear motivate you to live harder, longer, happier, and more free!

Much love to you all! Now go out and live! Live even when it hurts! Do what you love and NEVER regret!

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Self Talk & Negativity Not A Good Duo

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You have done it at some point in time. I don’t think I have met anyone that has not done so in my lifetime. I see it all the time. I see it on Facebook, Google, Twitter, blog posts, in private message, and even in text messages. I hear people doing it when I talk to them on the phone. I hear it in public places coming from adults, and children’s mouths. I see people in my own family doing it, and I have even done so myself. What is it you ask? What is it that is so bad that I speak of? It’s negative self-talk. It’s saying things to that are negative. Some say it out loud. Some write it in letters, emails, text messages, and private messages. Some do so in everyday conversations. Others do it in private because a part of them know it’s wrong.

There are times I find myself saying negative things to myself. I sometimes find myself saying things like “you’re so fat” or “I am such a fat ass”. Many times I have said to myself “why am I so stupid/forgetful/dumb?” I find myself saying things like “your writing sucks people only say it’s good to be nice to you” or I sometimes have said “you don’t help people. You just think you help people”. There are times when my hair won’t do what I want it to, and I will say “My hair sucks! That is why it doesn’t look good. If I didn’t have such coarse hair it would do what I want it to do.” Then when my kids are struggling or maybe having trouble in school I have found myself saying “it’s because you’re a bad mom”. I have said to myself “no one loves me!” There are many other negative things I have also said to myself.

I am writing about self-talk. It’s those conversations you have with yourself when you are alone. It might be what you say about yourself to others. It’s the things you say to yourself usually when times are rough. It’s when you are upset, sad, angry, or in pain. It’s when things don’t go your way. When something doesn’t happen like it should many people blame themselves. Many times people say these negative things out of habit. Here is the thing. There is nothing more of a turn off then someone with low self-confidence. There is nothing sexy about someone saying “I am so fat and ugly”. There is nothing that makes a smart person look dumb faster as when they say “man I am so stupid, and can’t do anything right”. There is nothing that makes a confident person distance themselves more than a person whom thinks badly of themselves. Confident people get tired of lifting people up that have poor self-confidence. It gets old fast always having to reassure someone they aren’t dumb/ugly/fat/stupid/worthless, and their hair is fabulous. Who wants to tell someone over and over they are a great parent/friend/sibling/co-worker.

Have your ever met someone that is beautiful to you, and you don’t really know why? It is likely they are confident of themselves, and that confidence shows. It shows in the way they walk, talk, speak, and carry themselves. Ever notice how you can have two people side by side, and one is as beautiful as a model on the cover of a magazine, and the other might be short, overweight without the greatest fashion sense, and wear glasses. The “beautiful” one can have a bad attitude, and zero confidence in their self. The other person can have great self-confidence, and a great attitude. Notice how you are drawn to the happy, self-confident one? They seem to have a happiness that soaks from their pores, and you just want to be in their company. You care what they have to say, and how they feel about things. They are beautiful to you, and the people around them. Yet the one that is “beautiful” according to society standards just turns you off. You feel awkward talking to them, and you don’t know what to say. Conversations feel forced, and in your mind you are planning an escape route.

People are naturally drawn to happy, confident people. I think that is because deep inside we all want happiness, and we try to stick with those we believe will bring us happiness. We want to be near happy people because we know it’s contagious. Plus who doesn’t want to laugh, and smile every day? It has taken me time, and hard work to not talk bad about myself. To not say the cruel things I have mentioned above. I tell myself this negative self-talk is not okay. When you talk bad about yourself your self-confidence gets lower, and lower then you find yourself at a low point. Maybe you’re depressed, sad, and angry. Then pretty soon you find yourself on a mission to make others believe these negative things you think of yourself. You find yourself mad at people that pay you a positive compliment, and you feel the need to argue with them. There is a part of you that wants to make them unhappy like you are. If you aren’t happy, why should they be happy? They might tell you that you’re beautiful, and you feel the need to say “no I am not. I am fat, and ugly. You are only saying that to be nice.” Most times people don’t pay you a compliment if they don’t mean it. They TRULY mean it, and that’s why they say it. People say things like “no you don’t look fat in those pants” to be nice. They don’t want to really tell you that you look better in the ankle length skirt because they don’t want to hurt your feelings. Most times people care. They care about how you feel, and what you think. Most people say what they feel, and are honest about it. If your friends, and partners don’t say nice things, and compliment you often then you need new friends. If your partner doesn’t make you feel beautiful, and tell you often how much they love you then you should reevaluate the relationship.

You can start to take your life back by committing to NOT talking bad about yourself. You need to slowly build up your self-confidence one day at a time. Before you say anything to yourself or about yourself think about this. I know many of you have small children. If you don’t have a small child I am sure you have a niece, nephew, cousin, or neighbor that is a small child. Before you say anything ask yourself. Would I say this to a small child? Would you call a small child fat, ugly or stupid? Would you tell a small child they are worthless? That they can’t do anything right, and they just screw everything up? Would you tell them that if they had better hair it would style better? Would you tell them they are worthless, and lazy? Would you tell a child with a chronic illness that no one will ever want them because they are so sick? Would you say to them because they are so sick is why no one loves them, and they live such a pathetic lonely life? Would you tell them they don’t deserve to have any friends, and people don’t value their friendship? I think the answer is a big-giant-no! If you wouldn’t say these horrible demeaning things to a child why are you saying them to yourself?

The answer is simple really. If you said such a thing to a small child you would hurt their feelings. You might make them cry. It might make them angry. You might even do some permanent damage saying such cruel things to them. If you told a child such cruel things it would likely make them depressed, and want to give up. Why do you value yourself any less? Why do you think it’s okay to hurt yourself, and say such horrible things about yourself? The answer is it’s not okay! You have to stop this negative self-talk today! I know it might be hard if it’s something you have done for a long time. Start small by saying out loud one good thing about yourself a day. When you are looking in the mirror point out the good features you see in yourself. If you feel you don’t see anything good then keep looking! There are beautiful things about you I promise! Say them out loud. Also if people pay you compliments say those to yourself over, and over until you believe it! If someone tells you that you are good at something repeat it to yourself. Ask your trusted friends and family members what they like about you. Write those things down to read on your bad days. Leave yourself notes saying positive things like “you’re strong” “I am beautiful”. This is something you should do daily! Every day you should say something nice to yourself!

I think often you will find many different people are paying you the same compliments. If many different people tell you that you’re a good writer it’s because you’re a good writer! If many people compliment your art it’s because it’s because you’re a good artist! If many people tell you that you’re a good friend it means you’re a good friend! If they tell you they love you then it’s likely they mean it! There is nothing more beautiful than a person that believes in themselves. That has confidence in their abilities, and values the person they are. Confidence wins hands down every time. Beauty comes in all shapes, sizes, colors, heights, cultures, and any health status. Flawless skin, a skinny ass, being tall, and wearing nice clothes doesn’t make you beautiful. Being kind, having a good attitude, being happy, and loving your self does! Try it! You will find when you do many people will seek your company. It comes naturally to those that truly are happy.

I think good self-confidence is a must when you have a chronic illness. Your body is changing, and your life has changed. Many times your life has changed permanently. You can’t be upset or down about your illness forever. Sadness and depression makes any illness worse. I am not saying happiness, and a good attitude will cure you but it sure makes your days on this earth more worth living. Blaming illness is the reason you are mad, sad, and depressed. It only goes so far. It’s okay to be mad, sad, and depressed about your illness sometimes for a short while. But not all the time! The thing is you must acknowledge when you feel like that, and do something! I have illnesses that are never going to go away. They are stuck with me, and I was born with some. To blame my illness would mean I would live the rest of my life placing blame. Where is the accountability in that? Sure my illness is the reason for something’s to have gone sour in my life. It has cost me to not be able to work anymore. Cost me a ton of money, and physical pain. Illness has caused me to lose friendships. It has caused me many arguments with family members, and some family members are yet to understand. Likely they never will understand!

That same illness has helped me make friends! It has allowed me to feel closer to some family members. It has given me more time to write, and more things to write about. It has given me a chance to help other ill people. It has made me realize I don’t need negativity in my life so I focus my time on those that love/like/care/cherish me. Those that don’t dig me can go be amongst themselves swimming in Lake Negativity. I would rather have just a few devoted friends and family, than a bunch of friends and family that are assholes to me. There will always be some friends, and family that choose to build their house on Denial River. You will never see eye to eye with everyone. At no point in life will everyone believe your life is what you say it is. Just leave those people be. Spend the majority of your time having a nice picnic on the beaches of Positivity Ocean where the water is warm year round. Everyone there gets along, and will accept you for what/who you are.

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It’s Illness not a Competition

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When I was younger I was on a swim team. This was very competitive, and everywhere you turned someone was encouraging you to do better. That you could swim faster. You could swim a longer distance. They pushed diet, long practices, good sleep habits, and many other things. You where always encouraged to be competitive. That you should swim to win, and if you didn’t win then you needed to swim harder, longer, and faster. Even my parents told me “go faster” as did everyone I knew. It was a sport, and sports are competitive. Some people
where good at the backstroke. Some did the breaststroke the best. Others it was butterfly, and freestyle. You always had those that could do them ALL great. Those people where the ones that swam medley. Others like myself always swam a relay, and you swam the stroke you did best. Relays forced the four people swimming to work as a team. Each one being great at a certain swimming stroke, and others swam what you were not go great at. Those relays taught me a lot about the real world.

The swim team in general taught me a lot about the real world. It taught me that is was okay to not be good at everything. It taught me that I was good at something, and it was okay to be able to do certain things better than others. It also taught me I was NOT good at everything, and that was okay. I learned that I could take my strengths, and combine them with others strengths, and together we made a team. Not only where you a small team of four when you swam a relay but also the team as a whole had to work together to succeed. Without those others, and when I was forced to do a medley on my own then I likely would not succeed. My success in part depended on the strengths of others. Because you see I sucked at the butterfly. As good of a swimmer as I was the butterfly was not my thing! I could do it sort of but I was slow, and awkward. I could make up for lost time in a medley because I was so fast at freestyle. I always lost so much time doing the butterfly. It just was not my best stroke. It didn’t make me a bad swimmer because I could do so many other things very well.

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You know what they say. Good outweighs bad. This was my best life lesson of all time. I learned that if a person had a lot of good qualities it was easy to forgive a few flaws. I learned that not everyone could be good at everything including myself but that didn’t mean I should stop trying. I finally understood that I needed to admire others strengths, and talents. I also needed to compliment others for their strengths and talents even when it hurt. Sometimes it does hurt us when others can do something better than we can. I would rather make others happy than to be unhappy myself. This makes it easier to compliment, and encourage others. Everyone is good at something! Some people are good at many things, and some people only a handful of things. But they do those few things so well because they are not busy “being good” at many things. Some would rather focus on a small number of talents vs many. You have to find what you are good at, and roll with it. And remember it is okay to be wrong, to make mistakes, and to be bad at something. No one can be good at everything! Cherish your strengths, and embrace your flaws.

You may wonder how all this applies to the world of illness? You have heard that saying “Keep swimming” well I always think of this when I am having a hard time. I remember when I was a kid, and I just had to keep swimming. Even when I was hard I always kept swimming I had others depending on me. I know I have to keep going. Giving up is not an option. I know that there is going to be something’s I will not be good at, and I will need to ask the help of others. Something’s I will not be good at, and that’s okay. I realize the importance of a good team. Everyone that is ill with a chronic illness needs a good team behind them! They need doctors that know how to treat them many times this is more than one doctor. It also means having physical therapist, occupational therapists, therapists, and a good pharmacist on your team. Construct your team of caregivers to fit your needs. Part of this team should also be an emotional support system. Have on your side friends, family, and maybe even co-workers that are there for you. Surround yourself by those that support you in your time of need. Some find this emotional support by way of social media, and online support groups. It helps to have someone who knows “exactly how you feel” this is where support groups are a valuable asset of chronic illness. Everyone needs a shoulder to cry on when they are upset. It is nice to have someone who will listen in your time of frustration. This is crucial in living with a chronic illness.

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One thing I do NOT understand about life with chronic illness is people’s need to be competitive. Why there are people out there that have to be sicker than others? Some it’s a competition of who has the most illnesses, the most bills, least friends or the worst family. Others it’s who has been treated the worst by medical professionals. Then there are others that always have the best. They claim they have the best doctors, partners, friends, family, and insurance. Often these same people claim they have the best treatment plan, outlook on life, and the best attitude about it all. They often have advice to give even when you don’t ask for it. Often these folks have attitudes “if you pray hard enough” “have only a positive attitude” or “exercise enough and only eat the right foods” you will get better or be healed. Anyone with a chronic illness has come across these folks. Some have these types of people in their own family. Everyone has that one friend who behaves like this. Sadly there are even some doctors, nurses, pharmacists, and therapists that think this way. What’s an ill person to do with these types of people? What do you say to them? What should you not say to them? How do you properly react when they are family or longtime friends? These behavior HURTS! All a person that is ill wants is to be understood, and if you don’t understand then have some empathy. Many of us desire not sympathy! We only want people to understand that our lives with illnesses can be incredibly hard.

I remember once I was in a support group, and I watched on as another member was telling about their illness. They explained that “yes you can have pain, and symptoms” even when your illness/injury is considered small by doctors standards of severity. They explained that being ill is not by the book, and everyone is different. Some have pain when things are considered small, and minor. While others illnesses are considered severe, and remain asymptomatic. At that moment another person then lists all her illnesses one by one. There were many illnesses, and it was a long giant list. On the list was some very severe illnesses listed. No one knew what to say to this other person. Many felt that she was competing to have the upper hand in the “who has the most illnesses”, and “who is the sickest” of the group. Or was it she was just reaching out, and needed support at that time? We were confused, and didn’t know how to react. I knew not the perfect words to say in that situation? Many times there is no convincing someone there is no need to compete. That it is not a competition. This is not the high school debate team. Many people will love, and support an ill person regardless. Many don’t care of the severity or the number of illnesses you do or don’t have. To many they only see you as a friend, and embrace everything you do, or don’t do. Friends love unconditionally, and friends should not compete with one another. Family should understand, and if they don’t then one must consider distancing themselves somewhat. You must do what is best for you! What brings positive to your life, and keep negativity to a minimum. Negativity only makes things worse!

If a person ever feels that they need to have more illness, or have more severe an illness to gain ones support then they need a new support system. If they feel that they only way to get attention is through illnesses then they need to get a new hobby. This is NOT the way to get attention or a claim to fame. Then it makes people not want to take anyone with an illness serious. Just because someone who is ill doesn’t always talk about the bad things that happen to them doesn’t mean that bad things don’t happen. Most see no point in sharing everything, and dislike the attention their illness brings. In my mind things aren’t that bad, and I think I am not that sick. It doesn’t mean I am NOT REALLY very sick. Being sick and having issues is just my normal abnormal. It is what my life consists of on a daily basis. I really know nothing else at this point. These illnesses are a part of me, and I can’t change it. It’s better to just embrace who you are. If people don’t love you just the way you are then you need to get new friends! If you like attention then get it in a positive way. Make people laugh. Be a writer, patient advocate, artist, or just be the best person you can be. Kindness goes a long way! And if all else fails color your hair blue. That always seems to work.

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The OTHER Pain Of Chronic Illness

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I wanted to write about something today that I think will hit home for many folks with chronic illness. Especially the folks that have chronic illnesses that causes chronic pain. I have migraines, and those hurt! I spend days in a dark quite room to help relieve the pain of a migraine. If I have a bad migraine I might have to do PT/OT after because it has left me with weakness. It is no secret I have Ehlers Danlos Syndrome, and EDS causes me a great amount of pain. It causes joint pain, muscle pain, and all over pain from ligaments being stretched that are not supposed to be stretched. Those ligaments also are used too much, and used for things they are not designed to do. It makes my insides hurt from the scar tissue. Always tugging, and pulling on my guts. EDS has caused me to have Bursitis, Arthritis, Scoliosis, and Disc Degenerative Disease all at an early age. That too hurts, and can be frustrating. When you live everyday with joints that sublax, and dislocate you are going to have some pain. Joints that DON’T sublax, and dislocate also hurt. They are being forced out of their normal range of motion. Joints are not meant to do that! Some people think hypermobility, being double jointed or really flexible is cool. Well to me it’s not! It causes abnormal wear, and tear on your joints! I wish I had known as a kid what I know now. Then I am pretty sure I wouldn’t have been flopping around doing party tricks, and always bending like I did to show off. I would take back being the “star student” in gymnastics because I could do what took the others kids months of training. Sometimes I can’t poop for a couple days, and THAT too hurts.

I am not talking about all that physical pain! I am talking about emotional pain! I am talking about the sadness, and grief that comes with having such painful illnesses. Not only do many people with these types of illnesses experience physical pain we also hurt on the inside! No I don’t mean my guts on the inside. I don’t mean being constipated, and not taking a dump for a week. I mean my brain, my heart, and my soul sometimes hurt! They hurt for the ‘what could have been should have been’. I hurt because of what I cannot do anymore. I hurt because I can’t work anyone. I hurt because my honey has to work so many hours, and I can’t work to help him pay the bills. I hurt because I hate my kids having to see me live like this. I hurt because I feel I am not the mother the kids deserve. I hurt because I hate having to be taken care of. I hurt when my house is a mess, and I am too sick to clean it. It hurts that I can’t bake my kids cookies anytime I want. It hurts that I can’t cook huge meals every day of the week anymore. It hurts because being ill costs so much! All the money we spend hauling me around to out state doctors, and my family has not had a real vacation in years. I hurt because my honey works hard, and he always has to use his paid vacation taking care of me. He has to use it when I am sick, in the hospital, or taking care of me after a surgery. I hurt because I feel I can’t be the friend my normal friends deserve. I hurt knowing that my friends too are suffering with illness, and pain. It hurts that sometimes I feel I am not a good sister to my sisters. Not a good daughter to my mom. It hurts that I am that in law that many think is crazy. It hurts that many people that think I am crazy, weird, bitchy, or that I talk too much haven’t taken the time to really know me! It hurts that those same people don’t see the strength, happiness, and the good heart I know I possess. I hurt when I can’t play with my cats and dogs because I don’t feel good. They are always happy to see me, and eager to love me so it hurts when I feel I am not as eager as they are.

It hurts to feel so alone in this illness! It hurts when your extended family is not there to comfort you when you are sick. Some can’t be there because they have families to take of too. But most are just too busy, don’t care, or are too busy living their own life. It hurts when I am in the hospital, and no one comes to visit. It hurts when I have a scary procedure, surgery, or test my family doesn’t call to check on me. It hurts when I need to talk I go through the contacts on my phone, and the only people that would understand are friends that are sick themselves. It hurts that my own mother doesn’t call me she will only text me. It hurts my mother feels her kids “are always sick, and she gets sick of hearing about “her kids being so sick”. Only one of her kids is normal, and without illness. The others are all sick with different illnesses, and medical problems. It hurts that I am not healthy like my mother. It hurts me to know my sisters are sick too! It hurts that in years past I tried my hardest to be there when my sisters needed me, and now the favor is not returned. It hurts when people tell me I need to lose weight. That I would feel so much better! But they don’t see my son that is 6, and no even 40 pounds yet has the same pain. My 11 year old son weighs a normal weight, and he hurts too. It hurts they don’t remember when I was the skinny little short kid that I had pain. It hurts that they don’t try to understand me. It hurts when people think I am only my illnesses, and that illness is all I think of. They are not here with me to see all that I do despite illness. They aren’t here living with me to see that these illnesses are often pushed aside, and I live my life. It’s this “pushing aside” that often gets me in trouble. I often push myself even when a doctor says “take it easy!” But it hurts they base how I live my life on how I answer the question “how are you?” Or what I say when asked the question “how are you feeling?” Normal people just don’t understand that when asked these questions we often answer with something about our health because these illnesses are hear every day! They are here to greet us when we wake up in the morning. They are here throughout the day in all that we do. Then they are STILL here when we go to bed at night. From the outside looking in it seems ‘it’s all we think of’ or that is ‘all that we do’. You may think our life is all about illness, but you don’t live with me! I am sorry you fail to see my strength, humor, and happiness I possess despite being sick. I live my life! I do things that make me happy all the time. It hurts you just fail to see it! It hurts you don’t see me as the fighter I know I am. I am still a wife, mother, friend, sister, and writer. You only see my illness, and that hurts! It hurts when the ones I love the most don’t see my strengths, and the will I have to live! They only see my weakness, all that I do wrong, and my illnesses.

It hurts to always feel I have to hide my pain. I hate I have to feel I have to hide not only my physical pain, but my emotional pain. It hurts that I feel I always have to be strong, and that I am only truly sick when it is convenient for others. It hurts to feel I can’t be honest, and share what being sick TRULY feels like. It hurts I can’t share what all we go through on a day to day basis without being judged. It hurts that many people don’t want to hear it. It hurts that I feel so alone so much! It hurts that often social media, and the things I post about my illness are viewed as a gossip column, and who knows what first. I hurts that for me in my life social media has taken the place of phone calls, and genuine concern. It hurts so much because I only place a ¼ of what I am really experiencing on social media. Rarely does anyone with a chronic illness put the whole 100% on social media. We write just enough to let people know what is going on. I never intended social media to take the place of checking on me, calling me, and asking me in person how I am. It hurts when I hear often hear the words “I read on facebook”.

Typed phrases and words are often misunderstood. It’s hard to get your true feelings across with typed text. Even I having a talent for writing am often misunderstood by something I try to put into typed words. When you are reading typed print it’s hard to see if the person is scared, mad, concerned, happy, or being funny. Many times typed text is taken out of context, and misunderstood. It’s hard to put emotions into words. You can take the same phrase both typed, and spoken people would understand it differently each time. Different people take typed text differently. It’s kind of like taking song lyrics, and asking people what they mean to them. You will get many different answers, and then you can ask the musician what the song really means. Many times it’s NOTHING like what the listener thinks. People tend to contort typed text to fit their own emotions at the time. They tend to twist it into something that fits their personality or what they are going through at the time. This hurts! It hurts that when I type something you may or may not understand. People often don’t ask what I truly meant. I never intended certain people to use social media to keep track of me or what is going on in my life. It’s not meant to use as judgment of how I am feeling.
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It hurts that I can’t make these symptoms go away! It hurts that they are debilitating, and I can do nothing about it! It hurts that no pill, herb, supplement, essential oil, a strong will, a good doctor, surgery, meditation, prayer, money, weight loss, if you love me enough, saying sorry, or positive thinking will make my genetic condition disappear. It hurts very bad that people assume all those things or one in itself can cure me. It hurts that some days I try everything I know to do, and nothing can make me feel better. I get tired of my symptoms! I get tired of not just being able to do what I want. Eat what I want. Go where I want to when I want to go. It hurts that some people feel illness is the only way to get attention when being ill is something I hate brings attention to me. It hurts all the things this illness robs me of! It hurts all the things this illness robs my family, and marriage of! It hurts when people don’t see the true me! That I am still me despite being sick! It hurts when people don’t see all the love that I have got to give.

All this hurt often leads to anger, and anger leads to outbursts. Outbursts lead to poor decisions. Poor decisions lead to guilt. Guilt leads to feeling hopeless. Feeling hopeless leads to depression. Depression leads to scary thoughts. Scary thoughts can lead to suicidal thoughts. Suicidal thoughts sometimes lead one to take their own life. And suicide benefits no one! It hurts that I can understand exactly how and why these people feel this is the only way out. Are people with chronic illness depressed? Yes, why yes we are depressed! At one point or another I don’t know anyone with a chronic illness that isn’t depressed or has been depressed in the past. To me if a person with a serious chronic illness says they have never depressed I think they are full of shit! That doesn’t mean they are depressed all the time or that they didn’t get better. Depression is serious, and never needs to be ignored! Depression is different for different people. Some people get better, and come out of depression easy. Other need the help from others, and take longer to get better. But depression is depression, and all of it is serious! The last thing they need is to be judged by others. It’s important to know the signs of depression, and when you see the signs you acknowledge them. After you have acknowledged them then you do something about it! Never assume depression will just go away!

That being said you must realize as a friend or family member this is where your role is very important. The depressed person might need your help! There comes a point when the depression gets so bad for some they feel they are walking alone in a dark scary forest. They feel lost, alone, and scared. You suddenly become scared about the world around you. You forget that this is a big world, and it’s not full of just dark scary forests. You forget that where there is a dark scary forest there is a bright meadow beyond it. A meadow filled with sunshine, cute animals, and sweet smelling flowers. That by just seeing the meadow you feel your spirits are lifted. This “meadow” is different for different people. As is the “dark scary forest”, and it’s important you acknowledge what in life is your dark scary forest. You also have to find your happy sunny meadow.

What scares you, and makes you feel hopeless? This could be being treated like crap by a cocky doctor. It could be being in the hospital. It might be the crushing thoughts you get at a family gathering, and your family treating you the way you DON’T want to be treated. It may be you are in a bad marriage. It might be the negative friendships in your life. It might be not feeling loved, and secure by a family member. It might be that you are getting treated with disrespect by your children. It may be that you no longer feel needed by your children. It may be that your children merely just grew up, and moved away leaving you feeling like you are not needed. It may be that you have an illness with a poor outcome. Or an illness that is terminal, and you are scared for you future. Maybe a friend or family member is sick, and that makes you sad. Maybe your pet died. Maybe you lost a friend or family member. Maybe you lost your home, car, or job. Maybe it is the feeling you get when you feel unloved, and unappreciated. The scary forest is different for different people! What might make one person sad, depressed or lurking on the edge of depression might not faze the next person. This is where you cannot judge. You may not understand it, but know they need you anyways.

Everyone needs someone. Everyone needs something. Everyone needs a safe place to fall when things gets hopeless. Everyone needs a sunny meadow. A meadow filled with things that make them happy. A meadow filled with the people that love you, and make you happy. A meadow where you know you will not be judged, and people will understand you. A meadow that you can go anytime you need to. No strings attached! Where is your meadow? And what is inside it? Who is inside your meadow to help you? Start by asking yourself what makes you happy? When you are down what helps? Who helps you when you feel like this? The meadow is the same as the scary forest. What makes one happy will not do a thing for the next person. One person’s happiness may be another’s annoyance. Make the meadow all about you! The things, people, sights, and smells that make you happy. Because when you need to go to the happy meadow it’s only you that matters!
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Know that no matter what happens to you there is always someone that loves you! If you feel you don’t have friends or family that will love you unconditionally FIND people that will! Surround yourself by those that only bring positive to your life! If someone is always bringing you down then leave them in your scary forest. Only bring the ones that improve your life, and attitude to the happy meadow. Realize depression is nothing to be ashamed of! I mean who wouldn't get depressed once in a while living with a painful chronic illness! Be a winner! The difference between a winner and a loser is winners know that winning takes hard work. A winner acknowledges winning takes planning, practice, hard work, love, and dedication. It’s the losers that assume winning will just fall into their lap. Losers don’t want to work for anything, and sit around waiting on someone else to do the winning for them.

This is your life! While your life may be filled with pain, illness, and anger at times you are still alive! You are here to live another day, and it’s up to you have you live today! And no matter how hard things get surround yourself in love, and laughter! If you are a normal person never forget that being ill or having an accident can happen to you! Be compassionate to your friends, and family. It is those same people you might need one day if tragedy strikes in your life.

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Setbacks

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Everyone goes through setbacks. I have had my fair share of them lately to say the least. I have been receiving many personal messages, emails, and messages on here about how I am. Did I disappear? Where are my posts? People are telling me that they miss my posts. Every time I see a message it brings a little glamour of hope to my life. A drop of hope that HEY DUMMY YOU CAN GET THROUGH THIS! Please keep those messages coming. They help me as much as my words help any of my readers. I need every one of you people if not more than you might ever need my words. I was watching an interview last night with Henry Rollins. He spoke about how he writes, and performed on stage to “release his rage”. He also spoke in detail about how he is one with his anger about how he uses his anger for good, and in his work. He talked about many good things can come out of anger yes many bad things come from anger too. But he uses his anger to drive him, and uses it to his advantage, and hey the dude is a millionaire. It must work for him.

It sank in for me because I though I so KNOW what you mean man! I use my anger to too but in a totally different way than Henry Rollins. I can’t sing, and I sure can’t shred any guitar. We both are writers though. Just in different aspects. I write poetry too I just rarely share it mostly because I don’t find it to be that good. But writing helps me when I am pist off, angry, and deeply saddened. I take what I am feeling and let those feelings flow through my pencil. Then it’s gone, and it’s better for that time. Some people just can never quite be comforted in such a away from another human being. Some people are just one that they are so alone in their thoughts that comfort has to come from within their own guts. Anger also helped drive me in this illness. It helps keep me out of this bed, and it helps keep me going. Every day I am fighting a huge battle inside. Every day there is a battle inside me. My insides are never quite, and I know no thoughtless existence. But use this to your advantage, and use it wisely. It does help. Everyone has a little Rocky Balboa hidden in there somewhere!

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My “this” is severe problems with my head, and neck. I was diagnosed over a year ago after having a stroke with Cranial Cervical Instability. I was advised then to seek a more specialized opinion. But at that time the CCI was only causing some medium grade occasional headaches I knew where not migraines. I knew they were different than my normal migraine headaches, and that point they were of no real emergency to me. The local neurosurgeon I was working with helped me research better doctors. He helped me find doctors that where more versed in not only CCI, but EDS as well. He helped me form a list of 4 doctors he thought had great credentials. The problem his 2 favorites didn’t take private insurance. At that point in time I was in no position to pay 400-600 for a consult. I carried on thinking “It can wait.” Until………….

Now here I am now. My brain is like cottage cheese some days. The information is just that, mushy bits lost in the white goo. It’s in there someplace, but trying to get it out seems impossible! I will try, and write a blog post, poem, or anything else, and I can’t get passes 3-4 sentences. It’s like some days feels like a zombie has ate my brains. Then out of random I get a moment of clarity I think “OH OH I am going to be ok!” Then minutes later I will turn around, and put my keys in the closet, and my coat, and the key peg. Or I will say something like “Hey can you please wash the photo album? And when you are done come look at these dishes with me.” Because I might at the time be looking at a photo album, and am trying to ask the kids to wash the dishes. This is humiliating for me. I am the writer with no words rights now. And the words I have made no sense are all wrong, and many make no sense. The pain I feel right know is indescribable. I the person of many words and even for my own poop cannot describe to you how bad this pain is! And I am experiencing CSF leaks and many other symptoms right now. So I do what I do best when things hurt so much. I build walls, and I hide inside them. With my pencil writing secret passages that many only I understand.

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I hate this, and it hurts! Then I had a damn epiphany! While talking to a friend about setbacks I thought what am I doing? HELLO BABY GENIUS! Then I thought I am NOT the only one going through this! I am NOT the first, and I will NEVER be the last. I have EDS! People with EDS, CCI, and also Chiari Malformation experience this all the time. I am not special. I am no different. Why sit here, and feel all alone. Why hide? Instead I should share with the world I feel like the substance that comes from a donkey’s rear end, and many days I may possible smell as such. But still I am here folks! EDS has not taken me yet. Or any of the BS EDS brings with it! I am here folks. I am still fighting. I just might do this fighting these days seated, or laying in my bed. But I have NOT given up. I NEVER will. The day I give up will only be the day my honey scatters my ashes, and not a day before that! My fight right now might be smaller than before but it’s still here!

I am just having some damn setbacks here! Setbacks in life, setbacks in my brain, and setbacks in my attitude! And like I have told you all before I refuse to spread doom & gloom. You all have enough of that in your life already. Hell I am sure you had your fair share over Thanksgiving dinner with your families, friends, and in-laws. Buckle up here comes Christmas!!!! J But kids this year all I want for Christmas is my abnormal normal back! But I am trying, and I will never STOP trying. Just bear with me until that happens, and I can squish my brain back in like it belongs. I don’t wish for a cure. I only wish to be better than this. I was born this way so what! I think we are millions, of millions of years of away from altering mutated DNA. I was made this way! My mutated broken DNA is a part of me the same as the DNA sequence that makes me short, and my feet small. This is me, and I am uniquely broken, and that’s fine by me. I just need to get back to where I was prior to this neck, and head stuff.

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Cheers, and pass the TP! Remember you are never alone! There is always someone willing to fight the fight with you, and to help you! I myself struggle Overcoming The Depression Of Chronic Illness. Find those people, and hold on to them for dear life! And please if you have feelings of suicide GET HELP! Talk to someone! Anyone at all! Even if you have to call 1-800-SUICIDE or chat online at https://www.imalive.org Remember pride is hard to swallow when you need talk out these feelings. But just think how that pine box will make you look fat. TALK ABOUT IT! I am not stranger to all this. It happens to me too. My mind goes there too sometimes. BUT I TALK ABOUT IT! YOU CAN TOO!

I may have EDS, HM migraines, MCAD, and POTS, and blah blah blah blah but I am nothing rare to the people that love me. I am just as much of a clown as I have always been! I am only rare to the medical professional with a narrow mind, and unwillingness to learn. Me rare, no! Never ending supply of TP very rare!

HAPPY HOLIDAYS & BLESSINGS IN THE NEW YEAR!
Regina

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Overcoming The Depression Of Chronic Illness

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I wanted to thank you all so much for reading my blog I wrote in the past. Day 8 Suicidal Thoughts In Chronic Illness. I’m Not immune. I was hesitant to post it. But then something amazing happened. I received an outpouring of positive comments, and messages. I didn’t expect that that to happen! I have no regrets writing that post, and letting people in my “bubble” a place I rarely let anyone come inside. I spoke of my private emotions, and it was hard. I felt I had to because I knew that so many others where feeling the same way too. I was again reminded that I’m not alone. I got several comments, and messages of people thanking me for writing that post. Some told me that they where thankful they where not alone. That they are no longer ashamed of the melancholy feelings they had been having. Some people thanked me. They thanked me that I helped them realize there are things to live for. That yes they struggle, but it helped them to realize that someone out there was feeling the same feelings they experienced. I had a few people tell me that they where having a bad day, or week, and I helped them remove a burden from their chest. One said it would help her family members understand it wasn’t “just her”, and that this wasn’t something “all in her head” these feelings we feel are very real! And yes others go through them! This is exactly why I blog! I always said I wanted to help at least one person. When I help more than one I feel I have done my job! It motivates me to write more! THANK YOU ALL! I have meaning to post this post for a very long time now, and I apologize that it has taken me so long. But sadly the topic of suicide, and suicidal thoughts comes up often in people with chronic illness. And especially those with intense frequent pain. Face we hear about it often. Someone we know dear to us has taken their life, or maybe we struggle with these thoughts ourselves. Either way it’s a big problem in the illness community. It remains the number one top searched term for topics for my blog. People are searching these terms DAILY! It’s nothing new, and is not going to change any time soon. We need to be well prepared for this.

Today I wanted to write about the opposite of what I wrote about last time. In the last post I let you into the world of my sadness. How I sometimes think when I am down. Today I will blog about what I do when I feel like that. My coping skills, what I do, and how I get through those times. To remind me that life is worth living. I must say it’s easy to get down. To have the deep dark sadness try to consume me. But I will say that when I get that sad it never lasts long. I realize I must do things to overcome it. As that sadness I feel at times rarely lifts itself. I must help it leave my life. I have to make it leave. If I do not make it leave it will hang around getting worse, and worse. I have to acknowledge it when it happens, and do something about it. It’s up to me, and no one else. Always remember that. You are responsible for yourself, and what you need to do. You can count on yourself, and you need to never wait on others to make you better. Focus on recognizing the signs so that you can help yourself. I picture sadness like a fog. Sometimes the fog lasts a few days, sometimes only minutes in a day. Other times I won’t experience it for weeks. Sometimes it just seems to linger making it hard for me to see what might be right in front of me. Sometimes I see it coming, and can kind of brace myself. Other times it comes in fast, and hard like a sand storm! And I have no idea what has hit me!

But you can overcome the fog, and I can too! Picture fog lights, a fan, and your loud voice. These are special lights to help you see in the fog. With their help you can see in front of you. You may not to be able to see far, but you can see! Picture a fan, a giant enormous fan that can blow away the fog. And you always have your voice. Even if you can’t see the man right beside you take comfort knowing that he can still hear you. Sometimes you have to yell! You must be loud to be heard. But just because you feel invisible doesn’t mean you don’t exist. Reach those arms out, and blindly search around if you have to find that person beside you in suicidal fog. It’s kind of like waking up to pee in the middle of the night. You just kind of stumble around eyes barely open. Arms out front feeling for walls, or anything in the way of your path. This is the same thing. You may have to just fumble around feeling stuff to find your way around. you are kind you can’t see exactly what you want, but just feel your way along the way. Sometimes we just have to make due. Juts because we feel invisible doesn’t mean we are.

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But even if we feel invisible sometimes it does have it’s perks too you know. I mean come on that whole “but you don’t look sick thing” gets annoying at times. It makes it hard for doctors, nurses, our friends, and our families to get us. And especially hard to get our illnesses. But the whole invisible illness does have perks sometimes! Like when you just want to run in, and out of the store. You don’t want to explain to every Tom, Dick, and Harry what is wrong with you. When you do have a semi good day, and just want to enjoy a day out with your family. You can blend in without drawing attention to your family on outings. Because face it who doesn’t get sick about talking illness 24-7? I mean when I am out having a burger with my kiddos I am aware I am sick. I was obviously in the cheese I couldn’t eat. The fries that will make my joints scream at me the next day. The regular soda with HFCS that will make me fart all the way home. It was very obvious in the migraine the fluorescent lights gave me. And oh so obvious in the huge chunk of change I just paid in co-pays for meds before dinner. Trust me talking of my illness during dinner is the furthest from my agenda. I rather discuss poop, earth worms, cat vomit,or the life cycle of maggots.

When we feel these feelings come we need to nip them in the bud in the early phase. We need to practice positive house cleaning right then, and there. If you find yourself going there with yourself then you need to clean your spiritual house! You need to take some time, and say ‘okay what is going on in my life that is negative?’ Write it down if you have to. What can be fixed, fix. Many times you will find that you have toxic friendships, co0workers, and maybe family members that are bringing you down. During a time like this you need all the positive support you can get, and it’s very important that you surround your self by those that choose to be happy, and bring positive to your life. Find things to do that make you happy. Listen to music. Learn a new hobby. Go for a walk. Watch a funny movie. Find some funny animal videos on YouTube. Those always do it for me. Surround yourself in happy, and remove anything negative. Don’t be afraid to ask for help! Chances are one of your friends could use some cheering up too.

And always remember that suicide is a permanent solution to a temporary problem! A problem that you can work through! You just need to find what helps you cope! You are needed, and it’s not your time. You have a purpose in this life that is why you are still alive! Find this purpose no matter how big or small, and find joy in it. And if you find yourself struggling reach out to someone. There are numbers to call. Sites with live chat advisors. USE THEM! Or call a trusted friend or family member. Never suffer alone! NEVER! NEVER! There is no excuse ever! And understand you are dumb, stupid,or idiotic for having these feelings. Real people have them everyday. Real people all over the world. Real people. Husbands, wives, aunts, uncles, cousins, co-workers, neighbors, people of any sexual orientation. Normal healthy people. But many, many people that are sick, and in pain have these feelings. Including myself, and you are not alone. Never feel that you are.

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Different people cope in different ways. What brings happiness to one, might confuse another. But as long as it helps you cope, and is something positive than roll with it. You have to always remember to have things you know will cheer you up! You have to be responsible for your own happiness. Never depend on your friends, spouse, family to make yourself happy. You must find happiness on your own. If these people are included in your happiness great! But they can not be relied on to get you through your darkest days to make you happy! We all know how people can be. How they sometimes are to busy when we need them the most. Look out for your heart. They can be happy with you, or you can go on happy without them. We can all make excuses why we can’t do things to cheer us up. No money, no time, pain, no baby sitter, no friends, or that there is nothing to do. This is the thinking you must change! You must find things within your means that cheer you up. And keep them close to your heart! So when you get down, and discouraged you can find some happiness in your life.

It was recently suggested to me that it’s a good idea to write down these things. Another friend told me this was suggested to her by a man with a terminal illness. He suggested to everyday write down something to live for. So she passed the suggestion on to me! “What a fabulous idea” I said! Especially when many whom are sick like me experience brain fog. We forget so many things. So we are well versed in the writing things down drill. I visualize in my mind the things that make me happy, but to write them down? This is a fabulous plan! Then when I can’t think of anything I can pull out that list! And there it is right in front of me the things that brighten my day. I am sure there will be some days I might forget. Now I can remind myself. It was also suggested to me many months ago by another Chronically Ill friends that she writes down things daily she what she is thankful for. So when she forgets, or gets discouraged she rereads what she wrote on pervious day. I decided this is what I shall do too! So I started to write down things I’m thankful, and everyday something to live for.

That something to live for doesn’t have to be huge! It could be listening to music, reading a book, playing with your kids. Remember big things come in small packages. So even small things can make you real happy! I also choose to write what I’am thankful for. I choose to write two things everyday. If I have more great! But I can always come up with two. Some days I may write the same things over, and over but that is okay! Just that I remind myself I still have a whole lot of good in my life. I’am here to stay!

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Years ago I made a do three things a day rule. Everyday I must accomplish three things. I made this rule to get myself out of bed! Now mind you some days these three things are tiny things. Like making myself a sandwich, taking a shower, or one load laundry. Some days they are bigger tasks if I feel decent. I might clean a room, cook dinner, and do some crafting. On very good days I save for the big tasks. But VERY GOOD days are few, and far between so somethings seem to always be waiting in the Que.. I list my chores by priority. Things that have to be done, and things that I need to do but they can wait. I do the things first that have to be done. Things last on the list are the wants. Like organizing my underwear drawer. That isn’t hurting me, just drives me nuts! But laundry, bathing, and dishes, are pretty important. So the underwear drawer waits, and waits, and waits………..

Eating, and feeding my kids is also priority. They must eat everyday. I have to be sure they eat. Granted some days I ask one of my kids to cook. It won’t hurt them one bit! There must know how to cook to one day to be on their own. My kids are taught young. I don’t want any phone calls when they are 20 asking how to boil water. Laundry is a priority. We have to have clean clothes. The kids are also taught from a young age how to do laundry. On a very bad day my oldest son can help, and do a load.The 9 year old can sort, and dry clothes. He is learning the whole how to run the washer. He is almost there. He forgets like soap first, clothes, and then will be “the dial goes where? Dark clothes are what kind of water?” Having kids help won’t hurt anything. It will help prepare them for life when they are grown. It’s teaching them life skills of their own really. And what kids occasionally doesn’t like to be a helper? Try this. List things by most importance. That way you don’t do to much, and regret it later, and if you have kids make them help! They should be helping! There is no reason they can’t. Even toddlers can have simple small jobs their size, and age level.

But you must find joy in each day. You must find things that do not involve your health to bring positive to your life. And most of all remember that life is worth living! Get out, and live it to the fullest. Life waits for no one.

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