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.

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.