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.

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 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.

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.