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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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.

20131007-233320.jpg

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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Two Love Birds To Rid Away The Doom

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My lovely readers please forgive my absence. When I started this blog I said I was going to make you people laugh. I was going to uplift you. That I would not flood you will medical articles, and symptoms, and why I feel like crap when I do. Here is the deal. What do I do when I am the bottom of my barrel of despair? I have many tell me I need to be honest about these emotions. That many people with chronic illness feel them the same as I do. But here is the thing. I don’t like talking about my feelings! I may be a girl, but I am more like a man. And you all know how men are about talking about their feelings? Yes that is me 100%! I can easily tell you about my latest poop, my childbirth, my periods (when I had them), and my sex life. I can say I am a very open person. Pretty much nothing is taboo here! And I am not easily offended or do I easily get my feelings hurt.

 

But the very minute people start talking about their inner most feelings I lock up like you would think I contacted polio! I become quite, reserved, and agitated even. At times like this it’s the only time I have no idea what to say. And because of this I often end up saying things that are wrong. When someone is teary eyed most likely they don’t want to hear poop jokes. Then there is that thing about showing affection. I have what my honey named “the bubble”. He jokes that I walk around surrounded in my own bubble, and I get very irritated when anyone gets near it, and very angry when anyone comes inside it. When I was pregnant with my daughter I acknowledged this, and knew that I needed to work on it. I didn’t grow up in a very loving affectionate home. I wanted to be different for my kids. I promised I would tell her I loved her often, and hug, and kiss her. It took some practice! No it was not hard to hug, and kiss my baby. It was not just habit. I had to tell myself to do it at first. You know remind myself to do it. Days went by, and it became easier. I tell all my kids I love them often, and do hug, and kiss them. However I am still not as much of an affectionate parent as most. I am more a tough parent. I find myself saying to them “you are okay!” when they fall down when it’s not that serious, and especially if they are not bleeding. Yes I kiss boo-boos I am not that mean. But I struggle to say the right supportive things to people when they need them. When someone is highly emotional, and upset is the hardest for me. I try not to just say “I am sorry” or “Oh that sucks”, and “I know how you feel” because who wants to hear those things? I have to try really hard to not say the wrong things. I have to remember not everyone is like me, and poop jokes, and toilets, farts don’t cheer everyone up.

 

I find myself sometimes when my honey tries to hug me stiffen up, and especially if I have had a bad pain day. And here lately I have had a lot of them. My head and neck problems are at an all-time high. I now have a headache every single day. It is not will I have a headache; it is how bad will it be today? These are not typical migraines. They are something else. I then have some days I get migraines on top of these other headaches. I am working on what this is. I have a big doctor appointment coming up with one of the top EDS guru’s. But during all this I have found myself depressed, angry, sad, confused, and pissed off. Chronic pain will do that to a person. It is hard on the body physically to fight the pain every day. Then you throw in the seizures I am now having along with all my other abnormal normal. Things like: Ehlers Danlos, seizures, neuropathy, POTS, my several types of migraines, my tricky gut, my MCAD, and whatever else I forgot.  My life is one big exciting mess.

 

In the midst of all this somewhere I had become scared, and very lonely. And I scared equals lips sealed like a clam. I find this hard to talk about. When I get scared I feel shameful, and that I should never be scared. I am the strong one. I don’t get scared. I don’t freak out. That’s other people. I don’t get cry over my situation, and what may or may not happen to me. When that does happen I hide in a hole like a bear on hibernation, and good luck getting me to talk about it. I even have a hard time talking to my husband about these feeling when I feel this bad. It’s like a locket that doesn’t want to open. And if I let it open, and spill these pieces of my heart then I seriously feel like a part of me becomes lost. I feel lost to begin with to even feel this way to start with. To talk about it is a whole another ball game.

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I don’t know what to say, or how to say it. Yes I the woman of many words don’t know how to tell you how I feel, and why. I don’t know how to tell you why I feel what I do. Because of this then I get angry, and frustrated. I am not angry at you. I am angry at myself. Angry at the situation! Angry at the things I can’t change at this time. Angry that everything always has to be so complicated, and my brain just doesn’t handle complicated well anymore. Why can’t things be simple? Why can’t I just be happy, and content, and things just work out?

 

My hunny had surgery in May. This scared the hell out of me. It’s usually me having the surgery, and he stuck in the waiting room. Most times it’s him all alone as we don’t have a good family support system for this kind of thing. Other than our oldest daughter that is grown. And most times she has to stay home, and care for her younger brothers. I honestly until that day had no idea what he went through all those times. I have had a lot of surgeries. I also have had a lot of scares in the hospital. Like when I had the stroke, and then I had the 2nd less severe one, and also 1 very traumatic birth. Our 3rd child was born where the babies chord was wrapped around his neck, and shoulder 4 times. He came out limp, and blue. Prior to this birth they had left my hunny in a supply closet to change into scrubs, and forgot about him in the emergency of my situation. He later told me that when he heard me screaming so loud (from the intense late stage labor) I had no epidural yet. I was trying to deliver normally, and all natural. Then I just got totally silent. He thought I died. It was just my epidural kicked in, Pain was intense, and I had to be rushed to OR when they determined problem with baby. When I could finally settle down from pain of labor, and stress to tell them they forgot about him. That is why I was screaming! But right as I would get 2 words out I would have another contraction.

 

I sat there all alone in that waiting room. They had trouble with his block, and had to run me out of the room. It took longer than the 5 or so minutes the doctor said it would. I freaked out thought something was wrong! I sat there all along tachycardia (from POTS) going crazy thinking how does he do this so many damn times? It made me appreciate him so much more. The aftercare was hard too, and made me appreciate him even more! He has had to do that a time or two. I am not exactly the best patient either. Then it made me realize life it too short for this nonsense. I need to pull my head out of my butt, and bond with him more. He is in fact the ONLY one that has ever been there for me day in, and day out. I have no doubt that he will continue to do so in the future. I am lucky to have a supportive husband. Many do not. I may not have a lot of family or friends that are here for me but the ones I do have are wonderful, and do so tirelessly. The few friends I do have are wonderful, and make things worth it! I need to look more often at what I have, and not focus what I don’t. Focus on those that try hard to help, and forget the ones that are too busy in their own lives.  A few good people on your team are better than many people on your team that are only so-so. My memory can’t handle large lists anyways, so the less people I have to remember to thank and appreciate are better for me anyways. Less really is more, and good things really do come in small packages.

 

But still I just couldn’t bring myself out of this pit of doom. I would get there almost then something would yank me back down again! Maybe a bad health day or someone is being weird to me. I might have a setback there was always something. Something kept yanking me down to the pit of doom. As much as I kept fighting something keep dragging me down. But I kept fighting, and inching up a little more each day. During all this my marriage suffered, my health suffered. I suffered. I am just not programmed to be an unhappy person. But no one can be happy all the time. Even the best people feel down sometimes. Even the happiest people feel sorry for themselves sometimes. And yes it happens to me. As much as I try not to let, it happens. But each day I have been finding the beauty in things. And slowly I have been coming out from under my rock.

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But what finally made me realize that life is not about all this doom and gloom is this……………..I have 2 friends that are getting married! They are both ill the same as I am, and a cute little love story they have to tell. Their love for one another amazes me. And I have been pleased to watch it blossom from the start, and that makes me feel special. I have also watched how it has changed one of them. As I have known her longer. Before she was like me now, kinda doom, and gloom. She was, and always has been a fighter. There was this just off, and depressive nature to her. After finding the right person for her it was like watching a flower bloom.

 

Her health improved somewhat. She is not healed no, but somewhat better. Her facial coloring improved. She was doing her hair again. You could tell she felt pretty once again. In her pictures she no longer looked shy, or agitated, but happy, and carefree. The way she worded things changed. She became more kind, and even tempered. She started cooking again, and there became a joy in wanting to take care of herself. When they post videos it makes me think of when my hunny, and I first met, and where so in love. The way they look at one another, and they just have that you know lovers gaze. And I tell myself who are we to deny this to anyone?

 

They posted their proposal, and asked people to post love songs. Naturally people where posting their wedding songs, and sharing memories of their wedding days. Their proposal gave a lot of people good memories. It gave so many people memories of their wedding, of being in love, and being just happy. But it was more than that. It was more than just memories. It reminded people to go back to the beginning. To the start, when things where new, and fresh. When you lived each other, and the love came easy. Because as you know when you have been married or in a relationship a long time you do love each still but tend to take one another for granted. As I seen their new love I told myself I should not take what I have for granted. It could be gone as fast as it became.

 

I think it was what a lot of people needed in the world of chronic pain, and busy lives in general. It was just what I needed to give me that extra push to get out of my slump. I realize that I can keep being sad, and pissed off over here. But the world is going to keep on living. I need to stop being so sad, and start posting again. There comes a point when you don’t post, and pretty soon you are making excuses of why to keep not posting. It becomes a vicious cycle, and procrastination at its finest. But what good does this doom, and depression do for anyone? It only brings you down more, and with it takes the ones you love. Can I honestly say that I don’t have reasons to be upset, sad, and depressed? No. I have many reasons to be sad, angry, and depressed. I am living in chronic pain right now. I have no idea how I am going to get to my doctor appointment that is 20+ hours away. How I am going to pay for said appointment. How I will combat my pain from one day to the next? But I am alive. I am here to write you this post. I am not dead.  I am free to do as I please. Life is not so bad.

 

I have to move along, and I have to keep fighting. Not just for me, but for all of you! My husband, friends, and my kids all need me! I may not have many people that love me, but those that do love me love me a lot. They count on me to be here for them. They need me as much as I need them. They need me to keep fighting. They are counting on me to not give up, and they could care less how I achieve this. Just that I do it, and I am here the next day when they wake up. My kids need their Mama, and it’s important I do my best to stay here as long as I can. As long as it’s something within my control, so that means I will never have an easy life. I will never have an easy out, or an easy way of doing things. But I will have a life to live, and it will be mine. And that my friend is way better than sleeping in a pine box.

 

I need this blog as much as you people need it. My readers have all been so kind to me, and help me just as much as I help them. I need you as much as you need my humor, and my words. It’s a give, and take relationship. I love nothing more than to receive the emails, and PM’s from readers telling me how this blog has helped with their illness. Some tell me thank you for giving them a voice, and putting their feelings into words. Some thank me for helping them with their family. They direct their family to the blog, and it helps their family better understand them, and what they go through. Others just thank me for making them laugh on a day when they are down. I need this, and I need these kind words of encouragement. Especially right now! When I myself struggle just like everyone else. And I need to get back in the swing of things! Back to helping myself, so I can keep helping all of you!

 

Thank you my two favorite love birds! For giving me that extra push to get back at it. You two remind me to be happy again, and look for the good in things. Remember to appreciate my own marriage, and treasure it. As it did start just the same yours did many years ago with a sweet proposal, and me being so excited over my new engagement ring. And I need to not forget the whole reason we got married in the first place. All the reasons we love one another. And talking with them about their proposal also brought about a conversation about my grandparents, and how my grandpa had her engagement ring made. Sweet memories there too, and I miss them so. But a good memory is always a welcome memory.

 

I may be sick, and I may have a ton of complications. But I do know that when the going gets tough I at least do have a good husband that will be here for me, and my kids have one hell of a dad. I have some of the best kids a Mama can ask for, and a few reliable family members I can count on from afar. And I have some bad ass friends! My glass is half full, but a half full glass is a glass that has room for ice. Or Vodka J Or both!

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