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.

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.

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...

MRI results

so on the 19th which was my birthday I went to my follow up and I learned nothing new. I need a neurologist for all of the actual info. However, I was given a few medications to make my life easier. I no take meds twice a day for my complex migraines and my nerve pain. I take medicine also for my twitching or spasms. Unfortunately they all make me tired as well. I am also going through the potential loss of my mate right now...it is really hard for me I feel like I am grasping at straws. I hate to be alone...and yet I often am alone to please people or because people can't handle me. I get mad for no reason or I over react an yell even when I am not upset. I do not understand much of what I say, think, or do. I am trying to figure things out. Like how can I be an actual part of society, how can I make some form of income. The issue is I am unreliable....sometimes I am awake at 6 am and sometimes I just cannot seem to get up. Then another issue is I have a hard time sitting for too long or standing for too long. so I watch other people work and sometimes I think I can work or do something and then I am reminded that I just cannot do the job good or bad, easy or hard. I get so desperate for a job I have been to the good will. I know I cannot work I just feel bad because I feel like a bum. This feeling often makes me do more than I should. The next day I hurt I'm tired and really useless. I cannot work for even an hour straight without being tired or in pain to the point that I cannot keep moving. I am doing my best to work with what I have for as long as I can. I look at my son and I feel like a bad mommy... Even when he insists I am a good mommy. I look at my family and feel like I make a bad sister/daughter. I know better but somehow knowing is not enough. I want to tell you guys things are better...I want to tell you guys I am headed for a better life...I want to be soo much different no one spend their child hood thinking they want to deal with chronic pain or chronic illness. I look in the mirror and feel like I am nothing. I feel useless.

I recently buzzed my hair...

My Pepaw

I know that when I was a baby My Pepaw was thin and able to walk. I do not remember it but I see pictures of him. What I do remember is when I would sit on the floor next to his wheel chair and play games. It is a pattern of course gaming was a big part of my life I was a 90s baby so games were the up and coming. I remember oreos and Dr. pepper. At a very young age Dr.pepper was also a big part of my life. I remember visiting my grandparents and my parents did not seem to like the habits I picked up. I remember sneaking out of bed late at night to a light nudge at my feet. It was Pepaw with his finger to his lips beckoning me to get into the Dr.pepper and Oreos to bring them out while he got the t.v. ready. We would stay up really late and wake up really early to spend as much time as we could alone together to play. I also remember him chasing me through the house in his chair doing his best to scare me with his teeth. To be honest during this time my Memaw was not as vivid a memory. My Pepaw was the only thing I could see. I loved him with all my little heart had. When I was 10 I was visiting my mom and something told me he was not here anymore. Sure enough my mom came in and did her best not to tell me what was happening so that I could fly out calmly. I knew though I was not upset. I took it rather well. It hurt but in my mind he was happy and able to walk again. I have never responded to death like most people and I still do not grieve with tears. I did it my own way and in my own time. I did many times in my pre-teens and teenage years cry but mostly because the house was so quiet without him. I cannot imagine a life without these memories. Seeing him and loving my Memaw and my Pepaw gives me strength to push on. Life is not easy for anyone. The best thing my grandparents showed me was not to judge people. Having them has opened my eyes to so many things and helps me with my son and him having grandparents.

My Memaw

My Memaw had so many illnesses and functioned well enough to care for my Pepaw (who had a seizure and was in a wheel chair. She is someone I look up to. I loved her with all of my heart and she always seemed so proud of me even when I made mistakes. She had 3 children and lost one at a young age. To me being half the woman she was would be a feat. I miss her very much. I remember her watching me play games. She would buy them and set them up and watch me play. It was a big part of my life. Christmas was her favorite holiday. She would decorate her yard so well and always went overboard. She always sent us home with a vehicle full of stuff. I saw her twice a year and enjoyed every minute of it. When I got my GED she gave me her SUV it was a God send and I still remember how it felt driving it home. My son called her MiMi and she loved it. I remember when she bought me my clarinet and sent me to private school. She made me feel so special. She would not have me going to the local schools.

She had Lupus and diabetes and may have had other issues I was not aware of. I never saw her cry and I never saw her not want to push on and live. I loved food at her place and enjoyed cakes and she always made sure no one went hungry or left without eating. She was great with technology and always wanted the newest thing. When she died I started getting sick...When I feel like I can't do it anymore I think of her and it helps. The best thing in my SUV is a recording that holds her voice. I love listening to it. Sometimes it hurts but it makes me feel closer to her.

Home school and Home school

So, I am in school as I believe I have mentioned before. I have an AA in business and I have 4 more classes till I have a BS in Medical Administration.  It can be really challenging because understanding what I hear and read is often difficult. My son is also home schooled. This can be difficult and some people become perplexed that I am willing to do this. I have a lot of help and my son does not like being away from me. We went to sea-world for a field trip. This is another good reason him and I are home schooled. It gives us a freedom to spend time together. Real talk: (I'm scared one day I won't be able to do these things. As it is I had to use one of those motorized carts.) He had a blast and it was nice to watch him enjoy himself. I took a lot of pictures and at the end of the day Auron, Geega, and I were more than done. I felt like I had walked the whole day. I enjoyed it though. As for my school even though it is hard I do it in hopes that the VA will pay me due to my GI bill which they rarely do. I will be done soon though. I love being able to spend all this time with my son and watching him learn. sharing his milestones with other people.

Support group

I posted saying I have an Epic support group and I do. There is no lack of moral support and often physical support in my life. My mom is amazing she knows when I feel bad and does her best to be here when it really matters. My little brother (1 of 2) who never fails to make me smile with his shenanigans and trouble making. He still respects me and that makes me feel good even though I know I'm not all here.  My sister (3 of 3 ) helps me with everything that is hard for me to do (it is a lot laundry, school, my son, and whatever else I need) . My sister (1 of 3) helps me stay updated on all the gaming stuff and puts my crochet obsession into reality. My sister (3 of 3) works hard and always gives me the most logical advice. My relatively new best friend always has my back, does her best to get me where I need to go, helps me with my room and does my hair. My mate who sits with me and holds me when I can't control myself. My son loves to help and care for me when he can (he also refuses to leave me much of the time). That is just immediate support!  I have a best friend whom I have known since I was 11 or so who always answers my calls and I get to leave it all and go see her from time to time. I have her mom who also always answers my calls and treats me like I am hers. She loves my son and treats him like a grandchild. That gives me support group here in Florida, in Virginia, and in California. I also of course have my dad, Step mom, Aunt and(2 of 2) Little brother, they are always following me on facebook and liking my things. My dad understands that my anxiety keeps me from the phone and loves to hear from me every chance he gets. My Aunt never fails to tell me she loves me as often as she can. My step mom does a lot of research when I have questions (reading is actually hard for me so it helps a lot) My little brother is a teenager so he goes through a lot but never fails to hear me out and makes me feel needed. I have another best friend who never fails to remind me that I have a getaway there and that she loves me. Giving me my support group in Texas. Somehow I forget from time to time that I have them. I know it seems crazy but then again my brain does not really work like most brains. Much of the time Someone in support net is there to catch me. I still get sad like really sad though and still feel alone. I know better but it never fails. I get to the point of crying and honestly not wanting to be here. The issues I am going through  are often hard to understand. This leads to people trying to understand. My thoughts often do not sound logical to others.  This leads to people thinking I am crazy. I often talk about my support group because I have remind myself they are there...trying to make my life easier. They love me and want what is best for me. I am not pleasable and yet they try often and hard.

Easter 2016