feeling empty, wanting more

I wake up and stumble through my day and sleep. My life is on repeat. I find it empty I just want more. I hunt for jobs most of the time knowing I could do them if society was not so stupid. Society expects smiles, 24/7 happiness. When you are in pain, sad, mad they want you to lie. They ask how you are and just want you to reply with good. They do not want to here about your day nor do they care how good or bad your life is. God forbid you tell them you are not ok and inconvenience them with your sorrows. I do my best to hide my pain from my son. I try to wait for sleep until I know he is sleeping. This is because I cry in my sleep. When I am asleep I cannot hide the pain I am in. He does not need to worry about me. I want to help support us. Many things I am capable of require excessive breaks and take a long time. I surround myself with people like me. I do this because when I am around people who are not in chronic pain they try to make me feel better. They try to pump me up or relate to me. They mean well I am sure but it really does not help. I am left hating myself for not "doing enough" or "limiting myself". I can assure you I always push my limits. People who are "able bodied" do not see this because to them a load of laundry does not get done due to laziness. For us though things do not get done because we ran out of steam or pain stopped us. Even writing this has become hard. Now that I have made you thoroughly bored  I thought I would share that I cut my sons hair.

undeserving

I have a hard time with the idea that poor people should not have nice things or do fun things. Coming from someone who is not only poor but also not healthy enough to work. I feel horrible when I spend money on anything but food, bills, and other responsibilities. My so is six and he will say mom can I do/have xyz if we have the money?" often the answer is no but he says ok and moves on. Most of the nice things we have were bought for us, given to us used, or the money was what I call lucky money. I do my best to remind myself that happiness is also a responsibility. being as incapable as I am makes me feel dirty when I do anything. I feel like if I cannot work I do not deserve to spend time with my family doing anything. Like going out is a crime. As walking is hard for me and gets harder each day I find myself in need of a wheel chair  for shopping, fun days, etc. I hate it. I push myself to walk hoping it will help me to walk. I still get stared at even though I have discovered that people around me can see the difficulty I have walking. I now have no hair . I tell myself that is why they stare even though they stared before. The only real difference is I care less and less what others think as I waddle to a wheel chair and sit down. If I have to get a push chair I feel like a burden and often try to avoid them. I hate feeling like a burden. "able bodied" people tend to say "if you need anything please ask I will help you" I get it they have lives and thins to do but when I here that I think maybe they over step themselves. I say this because when I ask for help it is often met by them taking their time to do it or them just avoiding it. Of course I feel like a burden. I try to spread my needs out to as many people as I can and I try to make my needs meet their needs. So if someone is headed to the kitchen then I will ask to be fed. However, it almost never works out that way. I often want to live in my own house and have a nice place...telling myself my son helps himself enough and having an open floor plan will somehow make life 100 percent easier. Even though I want those things I know I cannot have them. I feel like with all that I need from others how do I deserve to go out. When I do fun things usually it is me in a chair beaming at my son and whoever is with me. I love to see the people having fun. I often look miserable even when I am enjoying myself. This is probably due to all the physical pains and stuff. However, in my mind I am so happy. I remember in these moments my pepaw in his wheel chair watching us. I never understood how he enjoyed watching me. I do now. often when my family does fun things I get tired and while it makes sense that I want to go home I try to wait until they are ready to leave. This is mostly due to the fact that I want to stay as long as I can to watch them and enjoy them. It is odd how I can be so happy not doing much at all. I get so exhausted in my chair watching them run, climb, jump...etc I feel like they could do more if I could have some kind of income but so far that has proven to be a difficult thing for me. When I try to come up with ways to make money I and quickly reminded that even getting dressed is hard. As undeserving as I feel I went to fun spot with my son and his father I had fun mostly watching and tried to participate where I could.

Auron Wearing his daddy's new hard hat. No it is not really related to my post.

MRIs

So I had to get MRIs I have not finished my diagnosis so they are checking MRIs again to figure things out. I had two days of it which included four sessions. I have never seen my MRIs but I know they found lesions in my last set in the hospital. This time each day was two hours at minimum. For those of you who have never had an MRI they are not fun...at least in my opinion. They put you in a tube and tell you not to move. The entire time you hear the machine. It is like being the paper in a scanner. The first session was my brain and throat without contrast and the second was my brain and neck with contrast. I came out tired and ready to go home and crawl in bed. The next day was my back again one with contrast and one without contrast.

It is not too bad but many able bodied people tell me that they would not do it...Of course they would if it meant finding things out about their illness if they acquired one. So all I get to do now is wait on results. Ironically that is the hardest part waiting on results...The tech are not even allowed to hint at normal or abnormal results.

Good days, and bad days

So, lately I have more bad days than good days. On good days I get up and spend time with my family, I clean, I shower alone, and I leave the house coming back in a happy mood. On bad days I wake up and I feel like there is a blanket of extreme weight on me. When I finally convince myself to move I feel burning and as I walk I want to lay down. I struggle to breath. I get mad about everything. I hate everything and everyone. Later I am left with feeling bad for everything. People around me just say to push through it. If I know I am doing something wrong stop. Trust me it is not that easy. If it were it would be done and my days would be easier. I mean think about it really... People say "just be positive and your life will get better" and I have tried trust me. I did not just wake up and say "Oh I think I will make all the lives around me hard and in the process I'll exhaust myself". I did not wake up and say "you know what who needs freedom I'll have others take care of me". I look around me and I get it life is not fair and people all struggle but fuck instead of treating me like an invalid treat me human and just show extra compassion. When I rage do not walk away to save yourself and others from me. Hold me till I calm down. People do not want to be around me because I get mean, Yes I do, I do not mean to, but I do then, I am alone because of it which really just makes things worse. The screaming that has been going on in my head gets worse and then when it spills out and effects those around me, they split. I hear myself say things mean things and all I want is for everything to stop and for people to understand how scared I am. I mean it is not all bad but on my good days like my really good days I still feel slow and abnormal. I get more joy out of other people being near me and trying to be happy then I do out of just existing. I ask myself how it got here. How it all came to this. I feel lonely even when I am around people. It is funny because even when people come to see me I want them to go away but when they do go away I am alone...and not happy. I cry soo much now, half the time I am not even sure why. When I have good days I just think better, do better, I enjoy things. This should be everyday.

How my chronic illness affects you

Lately I have been noticing that my illness isn't just about me. It affects those close to me but it also has an affect on other people who don't even know anything about me. I get asked all the time if
I am actually sick or if I really need the cart I am in. People pass me quickly sometimes almost knocking me over because I am slow. I cannot for the life of me control my emotions and paranoia and so I get upset and I yell whether I mean it. I cry for no reason so people think they hurt me whether they have or not. My head is so hard to navigate. I feel like because I can do somethings I am crazy but then I am quickly reminded it is not all in my head. I made shirts I would like to order a few to wear when I go out but I haven't.

I am just now aware that I spelled affects wrong and to be honest I am not sure which is correct. I know I was not always like this and every day I wake up less myself.

Liar

I am often accused of lying or exaggerating about my situation. Most commonly from people who do not see me in my day to day life. It hurts to be told that. Especially after I spend my days convincing myself I am not crazy and I do feel these things. When something abnormal occurs I often do my best to take a step back and ask myself what is happening. I ask myself what I am feeling exactly and what may have caused it. If it's back pain for example, I would look at how I have treated my back all day... I'll be the first person to say "well what did you expect when you slouch all day"  If something occurs and I can share it (like if my heart is beating fast or just funny)I do so I can make sure it is not just me. So when these people say I'm exaggerating or lying it hurts.This is where I start a new thing. I am going to start adding definitions. I have been called a hypochondriac (according to called the mayo clinic is defined as illness anxiety disorder, sometimes called hypochondria or health anxiety, is worrying excessively that you are or may become seriously ill. You may have no physical symptoms. Or you may believe that normal body sensations or minor symptoms are signs of severe illness, even though a thorough medical exam doesn't reveal a serious medical condition.) To me when they found the lesions that meant this was not a figment of my imagination.

Confusion

As I kept going I soon realized it was growing harder. My son started Preschool at an amazing local Daycare Lake county prep Academy It's amazing it's in Eustis. I would get him ready do his hair and load him up in the suv my Memaw gave me. I drove him to school. Even then I began needing help. Waking up got hard and my mom would help me. She would drive over help me get him ready and help me get him to school when it started getting too hard. Mrs. Bromfield the director was amazing. I helped them setup their website and loved being around the school. So much that I started working there. One day I was driving and I tried to stop at a stop light...Pretty basic. My foot was in the wrong spot I felt like a deer in the middle of the road. I had no choice, Although I had lived through it I decided it was not worth the chance. After all my sons life, my life and the life of anyone in the car was at risk... I stopped driving. Even as a rider I would forget where I was going or what the daily plans were. I eventually quit working at the daycare because although I loved the kids and my job I wanted these schoolers to have a teacher who could focus. I started forgetting the order of things like days of the week, months in the year, numbers even. I would forget how old I was and how old my son was. I was always confused. I would stutter, stop talking in mid sentence, Lose words in my vocabulary. I always prided myself on having an extended vocabulary. I believed in precision of language and that using less words was easier than using a bunch of tiny words to explain something. When I talk to my son I use big words. I am often judged because people think he won't understand. I believe he knows what I want and the only way for him to learn is to hear words. Why does it matter what words I use to describe the message, as long as he gets it? I mean when I think about it I have used these words since he was born. It is not like I woke up one day and changed my vocabulary. As such,  my son shocked and continues to shock people around him when he uses big words like vulgarity, exasperated, and so on. I beam every time I hear him use big words. Since, I suffer from confusion though My vocabulary is fading, my processing speed is lower than most. I often feel like when I look in a mirror I do not see the old, intelligent, confident, witty me anymore. My stories often run on and lack a beginning end and middle. Despite all of this I push on...

Auron at VPK

From the Top

Hey guys,
    I am hoping I will not make people bored. My name is Corrie. I am 26 years old and I have a 6 year old son.

Me and the baby before I changed my hair

I am creating this blog because even though I have an epic amount of support this journey is still hard. I am hoping that by sharing I will not only be able to express myself but I will also be able to help others in their journey. I have a lot wrong with me. Mentally I am sure not much is right and physically it seems a new part of me begins to fail each month. I was not always like this. So, where do we begin? Let's just start from the top. I grew up in a pretty loving home my parents did divorce but it was not horrible. I was always so clumsy... broken bones, burns, cuts, and if it's sharp and on the ground you bet I will find it. I don't remember the pain. From any of those incidents. What I do remember is being rushed to the ER and surrounded by people I loved. I figured I would grow out of being clumsy and figured it was all normal. When I was 6 I was playing at a construction site while my dad was working. I slipped and hit my back on a rock. I peed myself from the fall... I had my friend Justine walk home with me and I never told my dad. I had back pain after that and still have back pain. I am not entirely sure if my herniated disk is related to that...but I have a herniated disk. I remember being obsessed with babies. I always wanted as many of them as I could have and I looked up to my Memaw for her brilliant mothering skills. I was smart growing up I hit a few gifted classes and got noticed by Johns Hopkins University when I was in elementary school. As I got older I was punctual, caring, and well learned in Adulting. Or so I thought. I worked hard on my credit and did my best to ensure that things would go well in as many controllable aspects of my life. I had my son in 2011 when I was 20. It was a rocky start but I was overjoyed by his existence. I managed to get My Associates of Arts in Business.  I am now struggling through my Bachelors of Science in medical administration. Why is it all the sudden a struggle? Well about three or four years ago I started getting tired much more than normal. I also began having crazy periods. then two or three years ago I started losing sensation in my feet which is now working its way to my chest. My face went numb on the left side and I could not control the muscles in my face. I went to the ER they thought maybe I had some sort of stroke. I was there for four days. they ran all kinds of tests. At the end of it they said there was a high chance I had Multiple Sclerosis as they found lesions during an MRI. The issue with my face was most likely from complicated Migraines. At least that is where it all started.