Guilty Confessions of a Disabled Person

So when I think about not being able bodied I honestly hate it. I have taken to complaining. When I say complaining I mean to anyone who will listen. At first I could not make sense of it. I know now it is a defense. I feel a need to defend myself because I always hear people say "oh your fine" or "it must be nice to not have to work". So I thought we could discuss some of my confessions. I am young. I get stared at a lot using my walker, wheelchair, scooter etc. I hate my life. I usually feel like I am a waste of space and a burden to my family. I do not have the luxury of working and yet disability feels it suited to fight me. Thus I am left feeling empty and worthless. I used to be active and useful now  I feel lazy. I cry when I spill things, break things or burn myself because I want to be independent I feel stupid and like I added to the burden. I envy old people who walk faster than me. I blame myself for being the way I am. I feel like even the people who care for me think I am in the way. if you don't use it you loose it does not apply to me I loose things anyway. I cringe when I remember I should be grateful. I beg God to tell me why even though I know better. I get through my day because of God but I do not pray enough to deserve it.

Relapse Triggers...and Other Cause and Effect Situations That My Medical Conditions

There are so many variables when it comes to my MS and other conditions. Heat causes me to shut down depending on how hot I get  I can go from needing to sit while I talk or carry on to not being able to keep up with simple conversation and lift my head or sleeping without waking until I cool off. Energy exertion like physical activity any repetitive movement has the same effect on me. In any of these situations I can get upset over the tiniest things and really fly off the handle. I start getting warm at 75 and Extreme heat is anything in the 90s or above. I get it that everyone has hard days  and I try not to act like my days are harder because I feel like that statement is relative. My Anxiety is a barrel of fun too. I cannot seem to enjoy much of anything. I try to ignore it but it drives me nuts. I tend to organize excessively. I get going and have a hard time settling.  I cannot handle talking on the phone. Hearing the phone ring is enough to upset me. The Problem I run into trying to clean or organize is I have herniated discs which hurt. Cleaning of any kind leads to over heating and physical exertion. Sleep is another variable if I get too much or not enough it can ruin my day.  In either case I can be groggy and easily upset. Naturally with any of my issues I struggle to do things on a daily basis. from simple tasks and daily chores to working outside or at a job or any kind.

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.