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.

Change

I am accepting that my life will change and that I need it to. It is not easy and I will make some hard choices. I will do things that are difficult. It will all pan out. I will keep some old things though... I have to plan better I think... or maybe I plan too much. I am not really sure but I do know I will be spending a lot more time in a doctors office...When I am done hopefully I will be more equipped to be more efficient and help my family. All I know is I am so sick of feeling useless. The funny thing is People around me are really shocked that this is even happening and that I am or have taken soo long to scrape myself up.To be honest I am just trying to get by. I need to get out of debt and get healthier. Knowing what I need is only half the battle. The rest will take time and real effort. On another note I found myself effected by both Irma and Harvey. If Jose hits VA i'll be effected by that one too... My vacation was not well planned but then I had no way to know hurricanes would be hitting left and right. I live in FL but was in Texas for Harvey, Then income was all but halted by Irma and soon I may have to deal with Jose and the other hurricanes that may hit FL so to be honest I am tired of these hurricanes.