undeserving

I have a hard time with the idea that poor people should not have nice things or do fun things. Coming from someone who is not only poor but also not healthy enough to work. I feel horrible when I spend money on anything but food, bills, and other responsibilities. My so is six and he will say mom can I do/have xyz if we have the money?" often the answer is no but he says ok and moves on. Most of the nice things we have were bought for us, given to us used, or the money was what I call lucky money. I do my best to remind myself that happiness is also a responsibility. being as incapable as I am makes me feel dirty when I do anything. I feel like if I cannot work I do not deserve to spend time with my family doing anything. Like going out is a crime. As walking is hard for me and gets harder each day I find myself in need of a wheel chair  for shopping, fun days, etc. I hate it. I push myself to walk hoping it will help me to walk. I still get stared at even though I have discovered that people around me can see the difficulty I have walking. I now have no hair . I tell myself that is why they stare even though they stared before. The only real difference is I care less and less what others think as I waddle to a wheel chair and sit down. If I have to get a push chair I feel like a burden and often try to avoid them. I hate feeling like a burden. "able bodied" people tend to say "if you need anything please ask I will help you" I get it they have lives and thins to do but when I here that I think maybe they over step themselves. I say this because when I ask for help it is often met by them taking their time to do it or them just avoiding it. Of course I feel like a burden. I try to spread my needs out to as many people as I can and I try to make my needs meet their needs. So if someone is headed to the kitchen then I will ask to be fed. However, it almost never works out that way. I often want to live in my own house and have a nice place...telling myself my son helps himself enough and having an open floor plan will somehow make life 100 percent easier. Even though I want those things I know I cannot have them. I feel like with all that I need from others how do I deserve to go out. When I do fun things usually it is me in a chair beaming at my son and whoever is with me. I love to see the people having fun. I often look miserable even when I am enjoying myself. This is probably due to all the physical pains and stuff. However, in my mind I am so happy. I remember in these moments my pepaw in his wheel chair watching us. I never understood how he enjoyed watching me. I do now. often when my family does fun things I get tired and while it makes sense that I want to go home I try to wait until they are ready to leave. This is mostly due to the fact that I want to stay as long as I can to watch them and enjoy them. It is odd how I can be so happy not doing much at all. I get so exhausted in my chair watching them run, climb, jump...etc I feel like they could do more if I could have some kind of income but so far that has proven to be a difficult thing for me. When I try to come up with ways to make money I and quickly reminded that even getting dressed is hard. As undeserving as I feel I went to fun spot with my son and his father I had fun mostly watching and tried to participate where I could.

Auron Wearing his daddy's new hard hat. No it is not really related to my post.

MRIs

So I had to get MRIs I have not finished my diagnosis so they are checking MRIs again to figure things out. I had two days of it which included four sessions. I have never seen my MRIs but I know they found lesions in my last set in the hospital. This time each day was two hours at minimum. For those of you who have never had an MRI they are not fun...at least in my opinion. They put you in a tube and tell you not to move. The entire time you hear the machine. It is like being the paper in a scanner. The first session was my brain and throat without contrast and the second was my brain and neck with contrast. I came out tired and ready to go home and crawl in bed. The next day was my back again one with contrast and one without contrast.

It is not too bad but many able bodied people tell me that they would not do it...Of course they would if it meant finding things out about their illness if they acquired one. So all I get to do now is wait on results. Ironically that is the hardest part waiting on results...The tech are not even allowed to hint at normal or abnormal results.

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...

What I am up to

Right now I am trying to be a part of society and maybe bring in an income to help around the house. I sell crafts when I can and sell random things I get my hands on to try and make money. I was thinking about doing a vlog as well but I do not know how well it will be received. I also do not know if it will be too much for me to handle. I always feel so silly because when I think about doing thing it is like my brain is so used to just doing things. When I try to do things my body is quick to reminds me that I cannot do them anymore. I struggle with video games sometimes. I struggle at typing, remembering how to read...and spell. Often I think I can clan and do things most people do. It gets exhausting just trying to do the simple things. People around me tell me I should do things even if they are hard. I run out of breath and have to take a break on the way to and from the shower. I try not to let other people bother me. I try to remember what I was like when I could just do things so that I do not get so upset. I find myself getting upset and not being able to communicate like I could before. I like this blog though because I can see what I am saying and I do not feel so lost. I can stop and come back and just keep going. You may notice my posts can be short sometimes and other times it is longer. I feel like other blogs are so much more than mine at times. I am worried about vlogging because people will see me and I am not as put together as I might come off sometimes. I suppose if I did not want to be judged I would not put myself out there as I have. I complain a lot. Lately I have just been trying to get through each day. I have my son doing Virtual summer camp and VBS to keep him as busy as I can while doing my best to be apart of it. I feel like I am not as big of a part of his life as of late...like maybe I  push him away. I am not sure how he sees me. I often worry about me being upset so easily.  He seems happy though. I would like to vlog with him and twitch with him. I dunno we will see.

Good days, and bad days

So, lately I have more bad days than good days. On good days I get up and spend time with my family, I clean, I shower alone, and I leave the house coming back in a happy mood. On bad days I wake up and I feel like there is a blanket of extreme weight on me. When I finally convince myself to move I feel burning and as I walk I want to lay down. I struggle to breath. I get mad about everything. I hate everything and everyone. Later I am left with feeling bad for everything. People around me just say to push through it. If I know I am doing something wrong stop. Trust me it is not that easy. If it were it would be done and my days would be easier. I mean think about it really... People say "just be positive and your life will get better" and I have tried trust me. I did not just wake up and say "Oh I think I will make all the lives around me hard and in the process I'll exhaust myself". I did not wake up and say "you know what who needs freedom I'll have others take care of me". I look around me and I get it life is not fair and people all struggle but fuck instead of treating me like an invalid treat me human and just show extra compassion. When I rage do not walk away to save yourself and others from me. Hold me till I calm down. People do not want to be around me because I get mean, Yes I do, I do not mean to, but I do then, I am alone because of it which really just makes things worse. The screaming that has been going on in my head gets worse and then when it spills out and effects those around me, they split. I hear myself say things mean things and all I want is for everything to stop and for people to understand how scared I am. I mean it is not all bad but on my good days like my really good days I still feel slow and abnormal. I get more joy out of other people being near me and trying to be happy then I do out of just existing. I ask myself how it got here. How it all came to this. I feel lonely even when I am around people. It is funny because even when people come to see me I want them to go away but when they do go away I am alone...and not happy. I cry soo much now, half the time I am not even sure why. When I have good days I just think better, do better, I enjoy things. This should be everyday.