My daily life is pretty easy to explain I wake up around 8 AM. I drink a huge glass of water then I eat a low-carb breakfast and two big cups of coffee with these I take my medicines that will hopefully keep me living one more day. The coffee has caffeine which supposedly kick starts my heart into a normal rhythm (who knows if that really truly works...Mayo says it does??) I have to eat low carb in the morning because my body doesn't like carbs…well…I should say the give me tachycardia and I get heart palpitations, which means I pass out.
I eat my breakfast and I watch TV. In the morning and watch ABC. Good morning America and live with Kelly and Michael are my favorites. While I do that I look at Facebook, catch up on my emails and just basically hope my body will kick start itself into a working function for the day. I know by about 1045 if it's going to be a good day or if it's going to be a real bad day. Every day around 930 I get up and I attempt to walk to the bathroom to brush my teeth and wash my face- if during this initial attempt at walking my body is successful then I have hopes that it will be a great day but, as is most days, my heart and my brain not being friends and have an argument- I usually end up on the floor.
At around 1015 I start my recumbent exercise program. It's called the Levine protocol- but I've been through the Levine protocol 3 times now and so now I'm doing the ELLE protocol which is 70 minutes of recumbent biking. I come and hop on my little bicycle and do my preprogrammed track of varying resistances. I say I know by 1045 if it's going to be a good day or not because those first 15 minutes of bike will either kill me or I push through and make it to the end of the 70 minutes.
After my biking I chug two things of bottled water and then go bathe. I can no longer bathe by myself because I've had multiple concussions. My body doesn’t like getting in and out of the bathtub. Supposedly there is something about passing out in water being dangerous (SARCASM.) I guess they don't mix…SO I have to make sure somebody is around while I bathe. It’s either I text people or I have my PCA here (which is 99% of the time.)
My wonderful joyous PCA is with me 6 hours a day. Without him I would literally be dead. He finds me on floor all the time. I love him. He saves my life. He dives after me when he sees me pass out. After my bath I drink more water- this time I put salt in my water because I need as much salt as I can physically consume. At noon I take more meds and I have a snack which is usually an apple or maybe a graham cracker if I'm craving carbs. I love carbs. I haven't had that Coke for three months now. I haven't had any artificial sweeteners for three WHOLE months and I'm incredibly proud. I was addicted. The reason I say this is because I used to always have a Diet Coke at noon, but alas no longer. So, now I drink sparkling water which cures the carbonation fix .
My afternoon is usually spent in my recliner with my legs elevated and my heated blanket over my cold limbs. My feet and hands get incredibly cold and turn white my blanket helps me majoprly. My recliner has a heated function as well and is amazing!
I hate afternoon TV between noon and 2 PM there is nothing on. At 2 o'clock I watch “let's make a deal” 3 o'clock “Dr. Phil” and 4 o'clock I watch “Ellen.” CBS has my afternoon. Finally at 5 o'clock is when I can even think about going to bed… you see all day I can barely keep my eyes open. My fatigue is so overwhelming that I can barely function. I often forget what I'm talking about, I completely space out and more than once I've drooled mid-sentence. I will not let myself go to bed before 6 o'clock- no matter how horrible I'm feeling. No matter how many times I passed out during the day- I will not go to bed for 6 PM!! It seems inhumane, lol.
I watch my news from 5 to about 630 when “Wheel of Fortune” comes on. That is my favorite. Then at about seven I'm able to have a snack and then go lay in my bed to watch prime time TV. I'm really happy the season because there's a lot of shows that I actually enjoy…the problem… a lot of the shows that I like the most come on at 9 PM! For me to stay awake to 9 PM is almost like asking me to fly. It's nearly impossible. Sometimes I can do it and it's totally worth it!! Yes I live for TV.
So to end my day, I lay in bed. I am usually uncomfortable because both of my hips hurt and my head is typically throbbing by this point. I have no idea why I still get horrible headaches at night. They have been here ever since my second concussion. As I lay in bed, I am lucky if I sleep all night. I often wake up from pain, or I get awoken having to get up go to bathroom…I then lay in bed praying to fall back asleep. Every time I step out of my bed I also pray that I don't pass out and hit the floor and injure myself!
That's my official day. I do that at least six days a week. Once maybe twice a week I get to get out of the house. I’ll do my shopping or go run errands with my friend Rachel or sometimes during the weekend Jill will come and go to lunch. Sometimes even my mom or my dad come visit, but each time I do some little activity like that I usually spend the next day completely and totally exhausted. I spend the next day recovering.
That's my life that's my reality