So, after recently reading about the " Spoon Theory", I've been inspired to write my own blog about my own experiences in daily life. My purpose is NOT to get pity or whatever, it's just to show people what I"m actually thinking and feeling because it's not really something you can " See ".
It's 8:00 AM and my alarm goes off. Half awake, I get Max up and we stumble around towards the stairs. We sit side by side on the step and scoot down on our butts down each one to the bottom. Sleepily, I get Max something to eat and go back upstairs on my hands and feet to find him something to wear to school. Ugh, I'm out of breathe. I need to stop and rest a minute.
I get his clothes and scoot back downstairs to get him dressed. Diaper, pants, shirt, socks, braces, shoes, leg straps. We watch TV a little bit and then get him in the stroller and get his coat on. I take him outside and have to sit in a chair to wait for his ride to school. When the van arrives, I push him to the van and put his backpack in. I sit on the floor of the van to unbuckle him and then use as much strength as possible to lift him into the van. Sit back down because lifting him was tiresome and buckle him while sitting. Stand up, fold the stroller up and put it in, and walk back into the house to take a break from the walk back in.
Now that Max is gone, shower time. Do the whole stairs fiasco again to get myself clothes. I take baths instead of showers, or when I do decide to shower, I do so sitting. I can't stand long enough. Washing my hair is tough but not as bad now that I have short hair. Keeping my hands up like that in my hair gets tiresome. I have to shave my underarms... I HATE this task. It's very difficult holding my arms up for any amount of time, but when Its over with, I get to relax a bit.
Time to get some cleaning done. Ugh. Just the thought of it tires me out! I normally sit to vaccum. Or " crawl" kinda. My eyes are pretty bad and being close to the floor to see, as well as not having to stand to vaccuum makes it a bit easier. I have to do dishes, even if I use the dishwasher, they stil need rinsed off. Time to get the stool and put it by the sink. Its very hard to focus on doing the dishes when you can barely focus on standing there. Now I better eat something, because when I go too long without eating, I get nauseous. There are other daily issues with my stomach, but i'll spare you the details..
Normally I'll sit on the computer a while till Max gets home. I'll then repeat the process of getting him back inside.
Today is a day Max has therapy. I get the stroller and go through the same process, of loading him in and out of the car, the office and back in the car and to the house. Its just easier for the both of us to use the stroller, since he doesn't have the strength to walk the whole way yet either.
Come home, relax a while, do our own thing. It's lovely.
If it's my turn to make some dinner, I'll get my trusty stool again and sit near the oven to make dinner.
Woops, I have to run to the store for something for dinner. At the store, I use an electric wheelchair. I can feel the looks people give me. " There's nothing wrong with her, she's being lazy" I can feel it.. I try to ignore it. It doesn't bother me as much since I moved to a new area. People don't know me. If they talk, it won't ever spread around. I shouldn't be as embarrassed. If I could just wear a sign around my neck where ever I go that says " I'M NOT LAZY, I CAN'T DO THIS WALKING". But alas, that would probably be worse.
Often, I avoid outings when people invite us places. I feel bad, and that they don't understand. I hate being asked to go soemwhere and having to worry about, " Is it going to be hot?" " How much walking is there? " " will I be able to get drinks?" " will there be places to sit or take breaks?" " WIll I hold other people back?". It's not really fun at all.
Let's skip to bedtime. Sleeping is so bittersweet. I love sleep. Its probably my favorite thing to do. Though, I'm a horrible sleeper. I can't lay a certain way for too long or I get majorly uncomfortable and have to move my muscles. Between myself constantly moving and my son, we don't always get the best sleep.
Well, that's a basic day for me. I hope this helps someone understand a bit or at least help someone relate to it. Ty for reading and follow if you'd like :)
