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...

Hospital stay and random thoughts!

My right arm felt like it was on fire and it was only getting worse. I was falling more and more. I knew I needed to be in the hospital. I packed a bag prepared to stay four days.When I got there paranoia set in. I felt so out of place. The doctor wanted to send me home. As the doctor and nurse came in with my discharge papers my arm flared up. The pain was bad enough to really make me cry. they gave me morphine. They gave me Toradol. They said I would be out. Nope I was still in pain. They moved me into observation. The next day they put me into MRI...told my son and his father I would be out in 15-20 min.

They had to scan my brain, neck, upper back, and lower back. with and without contrast. I arrive in the room and to be honest they try really hard to make it comfortable but if you have ever had an MRI you know it is not fun. They have me lay down. (mind you I have done this before and while it wasn't fun I just knew I would be fine.) I laid down they put ear plugs in, head phones on me, then foam to hold my head in place and finally on went the cage. Blankets were put over my body and I was handed this squeezable call button. She informed me I was going in and need to be as still as possible. In my headphones soft music played but she could also tell me when each picture would be taken and how long it would take. I could still hear The banging and clicking of the machine as the MRI took place. I felt different My brain was not it's usual "relax this needs to happen self" I began to panic in my head. I whimpered but I made it. After a good 45 minute she pulled me out and injected the contrast. then back in the tube I went. I had ripped the call ball off the plastic tube. After another 45 minutes she pulled me out and began taking everything off saying "you did well usually I have to give the patient time out but you powered through" she joked about me breaking the ball as she just popped it back on.

I was moved back into observation. They took more blood and did so through out my stay. I was told that the MRI showed and ms flare and was asked what medication I was on for ms.

The doctor was alarmed to hear about my struggles with trying to get a neurologist and informed me I would be moved to inpatient and would be put on a 5 day steroid treatment. I agreed and signed papers. They moved me and started treatment My sister was able to stay with me. I was placed on the fall risk list but was able to have my sister watch and help me to avoid the uncomfortable alarm. They started me also on a regimen of b12, d3, and one other b vitamin.  They informed me they were going to put me on a 3 day immune globulin iv therapy. so my total stay was extended to 10 days.  I had physical therapy which I detest but went through it anyway. They said I needed to allow people to help me and began assistance with everything. They were super worried about my fall risk. To the point where my biggest rebellion is going pee alone. They are sending me a walker to be honest I am not as scared of falling as the people around me are afraid of me falling if that makes sense. I am afraid in the shower. I get yelled at  anytime I try to do anything alone. I hate being a burden though. I hear it all the time that people know people with ms that have had it longer than me that behave better about it. While the doctor was worried about my condition he did tell me he has seen worse and that now is a good time to have ms because treatment is amazing. I know I need disability but there is always a tiny voice that says I'm fine I can do it. Then there are days where I can't do anything. like even typing or talking is next to impossible. on those days I wonder who even would hire me. I'm unreliable at best, I struggle with basic tasks. anyhow I'm home now I thought it would be great so far I'm manic and have an insatiable need to throw things away  and empty my life.I know this is ending funny but I'll post updates and thoughts later.

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.

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.

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...

Feeling Down

So I am feeling really gloomy today and I am not sure why. It was sudden too, like I was having a great day and now I am just really blah. I am trying to pack and I have new plans and I am really excited but for some reason I am ready to cry... I keep looking for a way out. I am on Twitch plus I noticed I did not give you guys a link to donation page. I could also be down because of the rain which brings me to this my friend started a go fund me.  I am hunting down videos of my son to try and catch up his youtube and I might start a blog about him as well I am just not sure yet. I kind of want him to get into blogging too when he is old enough. He is a ham he makes all sorts of videos now since apparently youtube is life. I should be happy but I feel really icky. I keep looking for a distraction. People expect you to just be in a good mood and if you feel bad they expect you to know why or to perk up around them. I just want people to validate the way other people feel instead of trying to change them. I do not know what that would sound like but I am sure more people would feel good about living...I love my son an most people around me I am a social creature but this ms has changed all of that...

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.

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.

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.