What bad days look like for me...

We have discussed average days and good days. Now, let's discuss bad days. It may get dark I feel like I should warn you. Like any day my bad day can begin any number of ways. I can sleep for days in a row just not able to really do more than take my medications. Or I can stumble out of bed and do my best to avoid falling often my family walks behind me even if I have my walker. I am not really hungry and if I am, I don't have the energy to eat. I tend to think or say dark things about not wanting to live or continue the struggle that is often my life. I struggle to read, write, type, or communicate verbally on these days. I have blurred and/or double vision. I am weak lifting a half a gallon can be hard. Aiming to sit on the toilet can be hard. I cannot focus and become frustrated easily. I talk to people who are not there, forget who I am, where I am, what I am doing. I forget how old I am, how old my son is, what day it is. It is not just hard on me either, It is hard on my family too. I see all these positive stories about people who have MS and get better... How I'm not supposed to give up. It is so hard not to. MS is not all I have to deal with. I have MS, PCOS, Complex Migraines, multiple herniated discs, depression, anxiety, gird, and, I'm obese. I feel like the last one is a stretch but anyway. My point is it gets dark and I know people around me are trying to help but sometimes when people are being nice it hurts...I don't know why. I feel bad that they can't help me and I feel like I am not doing enough. I feel like I'm lost and it's my fault. I whine a lot I know I do I try to make my posts focused on becoming healthy and doing things to be better but I just want people to understand it's hard. I love you guys for listening, I love you guys for seeing me, and I love you guys for trying to be nice and trying to help and even though it hurts it would hurt even more if people did not try.

Trip with the family!

So, we took a trip it was ok but it was hard. We were gone for a little over a month. I am not sure if it is my medicine or my ms but my brain is ridiculous. I forget where I am, what I am doing, what day it is, what is going on, what I have said and done. Things change for me in seconds and time is crazy. sometimes it seems like I lose so much time. During our trip I found a fascination with asmr many different types. It made me want to start vlogging and perhaps start an asmr channel. My son wants to start a game channel and take over his original channel to vlog. Anyways, My son enjoyed himself we went to a few campsites and he got to make friends. It was hard for me and my son knew it he is more aware of what is going on with me and I think it maybe a bad thing. I hate it when he wants me to play with him and I do not have it in me to do it.

 These are at one of our first campsites and I even included a rare picture of myself because I was resting and someone snapped a quick pic of me. 

 Some picture of how my son enjoyed himself on the trip he had tons of fun!

After his haircut on the way home!

How I feel on a good day

This blog is about how I feel and behave on a good day.On a good day I get out of bed and still feel plastic on my feet. I am able to read better and type better. I do budgeting, laundry and clean around the room. I plan and take care of shopping excursions. I buy things we have likely needed for a good while. I do research on many things blast through my sons school and feel great. I am still tired and often my back still hurts but I am able to ignore many of my issues. I am in a relatively good mood and often stay in a good mood. I take a shower and am able to wash more and may try to shave. I laugh which is not something I do often. I tend to laugh in a hysterical way when I do not feel well. It is not common for me to just laugh around my family. They can tell I feel quite normal. It is hard for people who are not around much to see the difference. Anyways, I wake up much earlier and tend to not have to worry about energy so I do not really have a routine. I see things more clearly and hear things more clearly. The jungle in my brain just sorts itself out.While much of this seems better it is important to remember I still have to use my walker, I still cannot run or jump. Those activities scare me. I am afraid to move to fast, jump, or move too far without my walker. I still have depressive thoughts they are just easier to push back. This post will be short mostly because I did not plan this post at all.

How my sister sees my life

My name is Jessica. I’m Corie’s sister. I am 2 years older than her, but she has taken care of me most of my adult life. Even before she knew she had MS, she was clumsy and prone to moments of forgetting. She was able to play it off, though.

When she had her son, she was an amazing mom. He was on a great diet, learned at an amazing rate. She recorded him every day.

Corie managed a website for our crafting business and made most of our products better than any of us. She has always been a perfectionist.

Over time, she has lost sensation in most of her lower body, as well as her hand-eye coordination. I have to check her feet regularly, as she cannot do it herself, to make sure she doesn’t have any sores. I help her with her son, as she has trouble waking up in the morning. I also have to make sure that he doesn’t take advantage of her.

She has MS that is going untreated. Most people, at her stage, wouldn’t be moving. With all of her problems, even her doctors are amazed she can still move. In my opinion, based on the fact that she shouldn’t even be able to move, even her bad days are a miracle. She’s an amazing and strong woman.

That doesn’t make her condition easier to watch. Actually, that makes it harder. I want her to see how amazing she is, but she doesn’t feel amazing. It is difficult to see the emotional pain she is in. She thinks she’s a loser. She cannot see just how much strength she uses every day.

Instead, I watch her cry and hate herself because she cannot do the things she used to be able to do. She cannot play games like she used to or crochet like she used to. Her biggest problem is that she cannot do all of the special projects, theme parks, and holiday pictures that she always did for her son and family.

Some days, she can barely move and needs help even going to the bathroom. Other days, she can do it all and takes advantage of it by doing projects with her son. He absolutely loves it. He knows his mother loves him, even at 7 years old. He acts like a child, but he is also growing up faster than most in this generation. I do not think that is a bad thing. He can actually handle the same responsibilities that my 11-year-old daughter can do. He can clean his own dishes, make his own food, wipe up his messes, and even helps with the laundry and sweeping.

Through it all, I am my sister’s body, and she is my brain. She does all of the things that my mind cannot, while I do all of the things that her body struggles with. Every day is different for her. Each day, she helps me to be able to do more and more on my own and I use that to be there for her more and more. She is my world.

How I see my life on an average day

Before I fully get into this we need to go over a few things. First this post has taken me a few days to plan, write, type, and post. Then we must have small amounts of knowledge of my current condition. I have MS this post goes over how I feel on an average day. I have very few good days as of late. Good days are the days I feel as close to the old me as I can. Next we need to go over the spoon theory. Rather than look it up and provide an exact definition I will explain it as I understand it. Imagine each day people wake up with a set amount of energy (spoons) and each action no matter how little has a cost. If the person runs out of spoons no action can be done without the collection of spoons. Basically, during this time the person is essentially out of order. Finally it is important to have an idea of who I used to be. I was super active. I drove or walked everywhere I needed to go. I took people where they needed to go as well. A lot of people  depended on me. They looked up to me for advice, and help with things. I was a mom, nanny, and friend to many. I was strong and very independent. Many of the people around me could attest to this big change. The first change came in the form of a personality change. I had long hair I did my best to be polite and share knowledge. Soon after I acquired MS I began to feel unlike myself. I became too tired to care for myself so I buzzed my hair. I buzzed my hair not because I liked it but because I could no longer care for my hair. Soon people started to notice I needed help with pretty much everything. I became the new me a me I am still getting used to it. On with my average day, starting my day is hard no matter how good, average or bad my day will be. Even though I am young at only 27 I wake up tired and stiff. I roll onto my side and use the bed to sit up. I start my day with 20 spoons just sitting up takes at least 1. I look at my sons empty bed because at this point he has left to be cared for by my sister. I put my feet on the ground my feet feel like they have plastic socks on or like gloves are on them. I stumble to the bathroom grabbing things that are tall enough along the way. My head is foggy and my body is stiff. For this explanation I will say that today is a laundry day. I get help bringing my load into the laundry room. I cannot do my own laundry when it is too many loads. I hold onto the washer and close the toilet next to it. I also hold the washer as I load it and add detergent this takes about 4 spoons leaving me with 15.  I sit down to wait on the load. While I am seated I call for my son. I unschool him so he grabs his school bag and we begin our learning process. As I am teaching him I gain spoons and use spoons leaving me with my 20 again. I grab laundry and move it from washer to dryer using 3 spoons leaving me with 17. I send my son back to my sister to work on his math. I sit to gain spoons until the laundry is done I gain back my 3 spoons. It's time to take out the dried laundry my someone helps me bring it all to my bed and I begin to fold it. On an average day I put a bit of it away and collect up toys and stuff off the ground to clean after my son some. At this point I have to sit and have someone help me put it away. I face plant in my bed and struggle to the top. I do my best to clean it off  for sleep.

me helping little man play before I got sick

me at my second hospital stay
I know it does not look like a huge change but that is why I share how I feel through my day.

gaming/crafting rant

When I game I feel like a kid. I move like badly. I know where I want to be and what I want to do but it just does not happen. The same goes for my crafting. It is upsetting when I have to ask for help. I mostly stopped twitching because of our internet but the other reason is I am embarrassed. I cringe watching me play so I do not want other people to have to see it. When I craft I cannot craft alone. I am so unstable and to be honest I hate it. I stopped crocheting because my stitches look weird and bad. I am a crazy perfectionist. Which is hard since having ms has made doing anything accurately very difficult. Although I feel unstable doing anything. So I know this is short but I am working on a really long post that I plan to make into a three post series. It will be about what it is like dealing with my ms before I get treatment. I just recently received my first paper that officially says I have ms I still have tons of tests to go through before I can receive treatment. I may work on a vlog and try to get back into twitch, etc. I am hunting a picture of me and my sister with our fist playstation but this is me and my little man way before I got sick...

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.

Trying to conform

In order to accomplish something anything really... I have moved in with my aunt to be close to my dad. Hopefully I can get somewhere this way. I am afraid of the pain in my arms because I recognize it to be nerve damage. I use my arms a lot and cannot imagine them being like my legs. I am doing what I can as fast as I can to get treated but it seems like a lot to me. I suppose the fact the I am no where is my fault. I try really hard and get tired of people acting like I do not try hard enough. I get tired of being told what to do and how to do it when it comes to my son. I am in an extensive amount of pain and because I hide it to the best of my ability people refuse to take my word for it. I do not whine and cry because my pain is my pain and I refuse to let it be an annoyance to those around me. This is probably why people do not understand I am not sure how to make them understand either. I assume I will sort it out.

do or do not

Everyday like many others I am faced with things I have a hard time doing. For me leaning over to grab something can be a huge mistake or closing my eyes in the shower could lead to leaning forward. I get scared when I do really simple things but I try hard to not allow that to stop me. I whine and complain a lot and I know I should not. I feel really bad when I ask for help and sometimes get upset when I cannot get help. I know it is not the right way or the best way to handle things. It is really easy to fall into the self pity train since so much has changed so fast. I went from being an able bodied, super confident, capable female to feeling like I cannot have any alone time. Although to be honest being alone scares me and makes it hard for my brain to know what to do. I tell myself at least 100 times a day that I am ok and there is not much I need to do. My brain says I need to be doing something all the time to be productive. (being productive can be laughable for me) I make myself clean, budget, attempt school, and generally try to be a human without the help of other humans. A few times I have fallen and had to call for help. When I have I often get the question "why did you not just ask for help before you fell?" to which I rarely have an answer. I suppose I do things that lead to falling because at 27 I really do not want to have to ask for help all the time. I have seen this to be a common thing as people age they need more and more help and instead of asking they test the boundaries. Mostly because let's face it no one wants to not be able. I remember seeing older people nod off and I would think "must be nice to be able to just nod off" now I nod off and I get upset because I lose time and it is not ok. I have to learn to accept all these things even though I feel like a massive failure who never accomplished anything in the 9 years I have been an adult. It is like someone decided since I was not successful soon enough they would just stop it in it's tracks. I look up at the glass ceiling and I cry as quietly as I can screaming in my head that I know who I am and this is not her. I see me and I know I am not looking at me. Yet each day I wake up and legs burning I sit at the edge of the bed and I tell myself do or do not...there is no try.

Follow the leader even in sickness

Growing up I was always so clumsy breaking or hurting myself in some way. As a result, I spent a lot of time in the hospital emergency room...when I was pregnant I ended up back home because I had trouble getting the care I needed. Once again my health is bringing me home. I feel bad  because I would like to care for myself. I also feel bad because as low maintenance as I try to be I always end up being high maintenance. Really high maintenance at this point. However, good leaders lead by example and when they cannot do so physically they can continue to lead from wherever they are emotionally. A long with these thoughts of leading I have been considering the position of the follower. A good leader knows they are nothing without their followers. Followers make the leader. they affect the leader and have more power really. As a follower it is important to remember you are important and that the leader only holds the position they hold to help the followers show their full potential. Followers must realize nothing in life is simple not even the leader has a stress free life. Leaders are no strangers to stress and behaving silly due to stress. Followers and leaders need to remember no question is silly. Confirming ones thoughts is a great way to prevent yourself from being silly. Any true leader will welcome questions. A leader that dislikes questions is faking their leadership...If a true leader is asked a question they cannot answer it is best they admit that they have no answer. I am unsure where I am in my life leader...follower...etc.

When u feel like a teenager again

This phrase is always regarded as a positive thing. Like to feel young again...or better.  For me it's not that at all. As a teenager I was always depressed an angry... I chased my boyfriend because I always felt like my world was ending. I didn't want it to end with me alone... I had a big fear of being alone. I feel like that now I feel like all I want before it ends is a place of my own where I can feel like I had a family. Its like my world is ending and I want something I can leave behind I can't leave things undone. So I woke up this morning my stomach felt like someone had forced acid into it...my legs were stiff like I had sat in the Indian position all night... I was up most of the night tossing and turning. Thinking I want to do what is best for my family but not knowing what to do trying to figure out what I could do even. Looking at bills but wanting a simple weekend...I am alone...but my mom stayed up with me at least until I let her know it was ok to leave me around 2 am....I feel so helpless...useless even...

Trying to human at the mall

At the mall watching my son bounce around. I am so thankful for indoor play grounds. He can play I can sit and watch it is in the air conditioned mall. It is great and free fun unless you count gas...at least I'm not exhausted after a few minutes of play to the point that I want to just go. He can run energy out in a safe environment. At the regular parks 5 minutes in I'm hot and exhausted just ready to go home. Then I'm sitting there trying to look like an active mom you know the moms who thought to bring water and follow their child from afar and call their kid down for water breaks etc. At the mall as long as I look up every now and then I got in just fine. Also blogging from my phone is 10 times better since my screen is smaller and it makes my posts look longer. On another note my son I super smart and super helpful he has decided he wants to help with taking care of me. He makes me lunch and makes sure I take my medicine. He insists on holding my hand because he thinks he can help if I fall (lol). He is so cute but I worry he will grow up faster because of me.

Flying Jitters

So, I am going to Texas soon to see my family. I have been flying since I was 12. I have never been nervous about it all of the sudden I am. I am afraid of not being able to do it and embarrassed about having to have help. I thought about just doing it myself but that scares me. I fall at home all the time...falling with my son at the airport would be scary. I am trying to focus on packing but i'm worried my carry on items will not be enough. I have four, two for me and two for my son but I only have three bags so I was trying to get another bag. I found a few super cheap but then I noticed a few clerical errors so my my bank was shy...aside from this my printer stopped working and my son uses it for school. I feel like I am drowning in debt every time I get somewhere I end up back at square one....whatever. My son seems happy I have picture from his summer camp he is having a blast and when I get to go on this trip he will have even more fun I'm sure...

What I have been up to

I have been trying to think about jobs I can do. Standing is hard, walking, sitting, thinking, and communicating all these every day things are not as easy for me. So I was trying to think of something I could do. I saw they needed a crosswalk person... so I thought I could do that and just after this I got up to walk towards the car and I felt myself walking. I felt drunk I teetered to the car  and decided maybe helping children cross the street is not my thing... so I thought maybe I could work in a call center. I was then called by a debt collector and my words were slurred I couldn't think fast enough I raised my voice and to be honest I  felt really stupid. I decided against the idea of a call center. Basically I just cannot seem to work in this society If I fall they assume I would sue if I even look unstable I am sure to lose my job...so when people think I am able bodied it upsets me because I can clean at home without being judged... If I do anything outside of my home society will assume I am drunk or something. I want a t-shirt that says I am not drunk I have ms. Change of subject though I have been trying to find a way I can bring money into the home and not just add up medical bills. As a result I twitch  I do not have a subscribe button but I do have a donation program as well... Twitch is a great way to ask me questions I can answer right off the bat. I don't talk much because a lot of people just want to watch me play. I will aleays answer any questions though and be active on the mic to talk with the people in chat. Making twitch a great place to get to know me.

New Ideas

So, I have some ideas to try and make a little money. Of course I cannot do it without followers. I have been using twitch. It is a place where I can game and get paid for it eventually. I would like to be able to make a separate blog for it. I also thought I might go back on youtube one for my son, one for me and maybe one for my gaming. However, this is a lot for me to handle so I am not sure how well I will do with it. I also have a great ides for an app for people with health problems but I want to get a patent first and I have no idea how to make the app. I am trying hard to make working at home a thing for me. This way I can support myself, stay at home with my son, not waste what energy I do have working away from my son, and if I get healthy ever again somehow I can do a better job at being a mom and maybe make more money. I eventually would like to get a camera for my ps4 and more games to play. I would also like to get some medical bills paid off, and fix my credit. It is not all gloom and doom I do have plans, goals, and really good days. The only thing is what I call a good day most people wouldn't. I think that a good day is a day where my son is having fun and my mate doesn't get beyond upset. I hope that my followers will check out each of these places here is my twitch: https://www.twitch.tv/shaionriswaifu my sons youtube is a bit out dated but here is a link anyways: https://www.youtube.com/channel/UCdUiToEtbJZQPZVT66fGFXw I still have to work on things but so far this is what I have so far...

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.

MRI results

so on the 19th which was my birthday I went to my follow up and I learned nothing new. I need a neurologist for all of the actual info. However, I was given a few medications to make my life easier. I no take meds twice a day for my complex migraines and my nerve pain. I take medicine also for my twitching or spasms. Unfortunately they all make me tired as well. I am also going through the potential loss of my mate right now...it is really hard for me I feel like I am grasping at straws. I hate to be alone...and yet I often am alone to please people or because people can't handle me. I get mad for no reason or I over react an yell even when I am not upset. I do not understand much of what I say, think, or do. I am trying to figure things out. Like how can I be an actual part of society, how can I make some form of income. The issue is I am unreliable....sometimes I am awake at 6 am and sometimes I just cannot seem to get up. Then another issue is I have a hard time sitting for too long or standing for too long. so I watch other people work and sometimes I think I can work or do something and then I am reminded that I just cannot do the job good or bad, easy or hard. I get so desperate for a job I have been to the good will. I know I cannot work I just feel bad because I feel like a bum. This feeling often makes me do more than I should. The next day I hurt I'm tired and really useless. I cannot work for even an hour straight without being tired or in pain to the point that I cannot keep moving. I am doing my best to work with what I have for as long as I can. I look at my son and I feel like a bad mommy... Even when he insists I am a good mommy. I look at my family and feel like I make a bad sister/daughter. I know better but somehow knowing is not enough. I want to tell you guys things are better...I want to tell you guys I am headed for a better life...I want to be soo much different no one spend their child hood thinking they want to deal with chronic pain or chronic illness. I look in the mirror and feel like I am nothing. I feel useless.

I recently buzzed my hair...

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.

Zero Value

I am up late because, this blog was meant to help me clear my mind, share what I am thinking with others, and hopefully help people deal with some form of chronic illness. I often feel drunk, or high even though I am not. I have a hard time balancing and my day can start off really well and end so badly. I wake up and struggle to move. I take a bath and brace myself because closing my eyes under the water has become a nightmare. I forget what I am doing while I am doing it. I struggle with spelling and many other basic things like dates, time, etc. I look at my 6 year old son and often question my ability to teach him. I try really hard to be logical and to show my intelligence. I often fall short of myself. I know I am no longer me. I used to feel so empowered just being me. Now I feel lost and often alone even though I know better. I tell my hand to make things happen and sometimes nothing happens or they seem to do what they want. I tell myself to get up and move but my legs fall short in their ability to hold me up. My cognitive ability is super low. I smile often though and struggle through each day thinking one day I may not smile. I look at my son and ask myself how far gone I am and how much further this will take me. While I can do anything I am focused on doing all I can to get as better as I can get. At the end of the day I am scared. Scared one day I will hold no value. Right now I have limited value. I cannot help with an income. I cannot help put food on the table or pay off debts. I know trying to get a job means I am asking for the employer to accept me on so many grounds. At the end of the day I know they will not be able to. I look for other ways to bring in money and always fall short. I never feel like I am doing enough. Like I am not enough. I feel like a huge burden and a waste of space. Which is funny because I have so many people who love me and say none of it is true. If it is not true then why do I feel this way. I was not always like this. I worked...and hard too. I took care of everything I could. I did my best to be a good mom and wife... and if I was why am I so alone now? Why do I value at zero. No one goes through life thinking they will have no value. I had so many desires, hopes, dreams. I wanted to be someone and to do something. In all of this somehow my family, friends, and even strangers seem to love me. They seem to want me in their lives. So the point in this blog is so people can see that even when life is hard...there is more. I will be ok. I may not ever be the old me but, I can embrace the new me. I can make this work. I cry sometimes but it's ok to not be ok. I just have to keep going. A wise man once told me that the only real difference between sane and insane is perception. Mind over matter. It is what you do with how you feel that hurts or helps. Of course he said it in other ways but to be honest I cannot remember how he said it. the meaning behind it stuck and I am sure he could say it 100 times more perfect. I like to put pictures up with each post this time I have no real lead on what to put here so I'm wingin it... A wise woman once told me "fake it 'till you make it" so here is a shot of me and my dad.