TennCare called today and requested a new PAE, and it got me to thinking about my daily needs.
On social media, I tend to be very positive and encouraging or funny because I know how depressing being disabled can be, especially during the quarantine. I wonder if people see my social media and get the wrong impression of my reality? Do they know that I published my autobiography and assume that I make money from book sales? Do they see the videos I post, and assume that I don’t need help with everyday life?
The cold hard truth is I need help every day with everything I do!
I have grown used to people assuming things because I am capable of putting on a smile at a moment's notice. As a trauma survivor, the ability to put on a fake smile becomes apart of your personality. As a mother who had to fight to keep her daughter, I learned to shut my mouth and obey the system.
I want to use this blog to make it clear that I need help with the necessary daily tasks. I forget to eat, drink, take my medication. Below is a glimpse into my reality. If I push the limits or I get overly stressed, then I have crash landings where I end up in bed for days.
I live with my daughter, and my sister is paid by TennCare to provide caregiving services 32 hours a week. The rest of the time, I am on my own.
#1. My mind is constantly racing. Even when I am sleeping, I dream. It doesn't matter how fatigued I am; my mind is working. Many times my thoughts are foggy, but I still have constant thoughts.
#2. My daughter got me a cellular phone last year for Christmas, and I have a laptop and a desktop computer that I can use when I am able. I also have note pads so I can scribble down ideas.
#3. A program called Grammarly helps me with my many typos. I am a horrible speller, and I tend to forget what I am saying in the middle of a sentence. My hands are shaky, so it sometimes takes me hours to type something that would take you only five minutes.
#4. Google assistance reminds me of appointments.
#5. I do not drive, nor do I own a vehicle. If I go somewhere, my sister or daughter will drive me.
#6. Walgreens has my prescriptions on auto-refill, and my sister picks them up when I get a text that they are ready. Janna makes my pillbox and reminds me to take my medicine.
#7. I have an app on my phone for Walgreens, Walmart, Kroger & Amazon. If I need something, I can order it, and Janna will pick it up, or it gets mailed to my house.
#8. Janna prepares all my meals, and I have snacks next to my bed and in my purse, so I never go without food.
#9. Janna helps me with bathroom, dressing, and bathing needs. I have a shower chair and a handheld showers head.
#10. In all of my social media posts, I am sitting down or laying down. My legs rarely work. I have canes and a wheelchair.
#11. Janna does basic housekeeping and laundry for me.
I do try to live a private life at home and have fun on social media with my friends. I enjoy doing outreach and awareness for disabilities and trauma survivors. It is the only social time that I have other than playing with my grandchildren.
I refuse to give up! I do the best I can to live a meaningful life while respecting my limitations.
When it comes to David, we are friends. We are divorced, and he is disabled due to Diabetes, Lyme Disease, and Degenerative disc disease. He does good to take care of himself, and I can see when I ask him for help that he gets aggravated. Alexandria has a three-year-old and is eight months pregnant. Right now, I am the only income in the home, and my sister took me to get commodities at the fairgrounds this morning. I haven't made any profit from my book, and sales are zero right now. We are doing the best we can to get by as a family.
I would appreciate it if people didn't assume they knew everything about my life when they haven't walked in my shoes or asked me.
I do have a blessed life full of love from my children, sister, grandchildren, nephews, nieces, and cousins. I have plenty of good times chatting with friends online. Life could be worse. I am thankful for having food, clothing, and shelter. I am very grateful for my sister. Just know every day I fight a battle inside my body, and I am doing the best I can do!
On social media, I tend to be very positive and encouraging or funny because I know how depressing being disabled can be, especially during the quarantine. I wonder if people see my social media and get the wrong impression of my reality? Do they know that I published my autobiography and assume that I make money from book sales? Do they see the videos I post, and assume that I don’t need help with everyday life?
The cold hard truth is I need help every day with everything I do!
I have grown used to people assuming things because I am capable of putting on a smile at a moment's notice. As a trauma survivor, the ability to put on a fake smile becomes apart of your personality. As a mother who had to fight to keep her daughter, I learned to shut my mouth and obey the system.
I want to use this blog to make it clear that I need help with the necessary daily tasks. I forget to eat, drink, take my medication. Below is a glimpse into my reality. If I push the limits or I get overly stressed, then I have crash landings where I end up in bed for days.
I live with my daughter, and my sister is paid by TennCare to provide caregiving services 32 hours a week. The rest of the time, I am on my own.
#1. My mind is constantly racing. Even when I am sleeping, I dream. It doesn't matter how fatigued I am; my mind is working. Many times my thoughts are foggy, but I still have constant thoughts.
#2. My daughter got me a cellular phone last year for Christmas, and I have a laptop and a desktop computer that I can use when I am able. I also have note pads so I can scribble down ideas.
#3. A program called Grammarly helps me with my many typos. I am a horrible speller, and I tend to forget what I am saying in the middle of a sentence. My hands are shaky, so it sometimes takes me hours to type something that would take you only five minutes.
#4. Google assistance reminds me of appointments.
#5. I do not drive, nor do I own a vehicle. If I go somewhere, my sister or daughter will drive me.
#6. Walgreens has my prescriptions on auto-refill, and my sister picks them up when I get a text that they are ready. Janna makes my pillbox and reminds me to take my medicine.
#7. I have an app on my phone for Walgreens, Walmart, Kroger & Amazon. If I need something, I can order it, and Janna will pick it up, or it gets mailed to my house.
#8. Janna prepares all my meals, and I have snacks next to my bed and in my purse, so I never go without food.
#9. Janna helps me with bathroom, dressing, and bathing needs. I have a shower chair and a handheld showers head.
#10. In all of my social media posts, I am sitting down or laying down. My legs rarely work. I have canes and a wheelchair.
#11. Janna does basic housekeeping and laundry for me.
I do try to live a private life at home and have fun on social media with my friends. I enjoy doing outreach and awareness for disabilities and trauma survivors. It is the only social time that I have other than playing with my grandchildren.
I refuse to give up! I do the best I can to live a meaningful life while respecting my limitations.
When it comes to David, we are friends. We are divorced, and he is disabled due to Diabetes, Lyme Disease, and Degenerative disc disease. He does good to take care of himself, and I can see when I ask him for help that he gets aggravated. Alexandria has a three-year-old and is eight months pregnant. Right now, I am the only income in the home, and my sister took me to get commodities at the fairgrounds this morning. I haven't made any profit from my book, and sales are zero right now. We are doing the best we can to get by as a family.
I would appreciate it if people didn't assume they knew everything about my life when they haven't walked in my shoes or asked me.
I do have a blessed life full of love from my children, sister, grandchildren, nephews, nieces, and cousins. I have plenty of good times chatting with friends online. Life could be worse. I am thankful for having food, clothing, and shelter. I am very grateful for my sister. Just know every day I fight a battle inside my body, and I am doing the best I can do!
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