Someone asked me to write about my typical day, I thought about it and decided to do so with a little twist. I will detail a typical day, but include my thoughts and challenges I experience.
My day starts between 1am - 5pm when I wake up needing suction of mucus from my trach. I push my call alarm that shrieks, waking up Wyatt and my mom. This can occur 1-5 times during the night, which sucks for my mom. In the near future I will hire a night nurse so mom can sleep better. I then use an eye gaze computer in bed until I sleep. I usually doze in and out, I also have wild dreams during this period. Fun fact: in my dreams I always have ALS but I am walking and physically unaffected.
At 8am my morning caregiver arrives and we start with my morning meds and supplements. It all gets mixed together and given to me through my feeding tube. Next step is Wyatt's favorite, she takes him for a walk and he pees on every bush, literally. If he poops he gets a treat. When they come back, I will do range of motion exercises and stretching. I still can enjoy coffee by mouth, so half a cup goes in by mouth and then the other half goes in the g tube. We then wait for my stomach to say “ I’m ready to poop.” When this exciting time comes we use the hoyer lift to transfer me to commode. If I have a good poop I am happy for the day, small or no poop I am usually irritable for the day. When I’m done and cleaned I get transferred back to bed.
Once situated in bed I will need cough therapy and heavy suctioning to clear the mucus from the evening. I get my teeth brushed, face washed and my skin products applied. I normally let the caregivers choose my clothes and socks, it's fun because I never know what they will choose. Before I get dressed they will clean my g tube and tracheostomy sites, apply a skin barrier cream and put new gauze bandages. Then i get dressed, transferred to my powerchair, ears and nose cleaned and my hair combed. After all this activity i get my pc set up on my chair and I finally can relax. By the way it’s probably 11:30am.
At noon I take medicine for neuropathy and muscle spasms, and depending how I feel I may take anxiety meds. I eat lunch at 12:30, sometimes real foods by mouth or prepared formula food through my g tube. Always a crapshoot of how I’m feeling at this time, but typically I will go for a walk outside with wyatt and say hello to neighbors. I take Lexapro daily at 1pm and then my caregiver goes home right after 1pm.
From 1pm on I will listen to podcasts, audiobooks, read articles on the Internet, emails, texts etc. I try to get a nap in, and not bother mom too much. It’s basically free time to go or do whatever we need to do. At 6pm the night caregiver arrives. She will prepare my night meds and overnight feeding. I try to eat something by mouth between 6:30-7:00. Then I just hang around with my family, watch sports until after 8pm when I get tired. Then when I’m ready for bed, we start the night time routine.
Using the hoyer lift i get transferred to bed, will do cough therapy and heavy suctioning and try to get me comfortable in bed. I am weird, I feel all the wrinkles so my shirt, boxers and sheets have to be tight and perfect. My favorite time of day is next, foot and hand massage. We use a cbd cream for pain and relaxation. It really does help relax me, and reduce the pain in my extremities. I will receive night meds around 9pm, and watch movies until I fall asleep. Around 10pm I have skin products applied to my face, and get my cbd tincture with melatonin, and my Papa & Barkley cbd/thc tincture. I usually stay awake until at least 11pm so I don’t wake up too early.
So that’s the outline of a normal day. I have daily caregivers from 8am to 1pm, and 6pm to 11pm. We adjust the routines as needed for doctors visit, going to other appointments etc. My days are very routine, and that’s the way I like it. Visitors always brighten my day, so make plans to visit me :).
When I was diagnosed, communication about my future with friends and family was difficult. Of course we cried, got angry, asked every crazy question you could think of, and researched different treatments. We eventually determined we would walk this path together, and adjust life as needed. It all sounded acceptable to me, and 4 years later we are still walking this path together.
I want to talk about managing relationships. Everything has changed physically, emotionally and mentally. If I was upset, I could go for a drive, a run, go outside for a cigarette and beer or just walk alone. Now I just sit in my chair unable to do any of those things, heck I can’t even yell. If I wanted to show love, a kiss, hug, or well you know, I would do it. Now I just use my eyes and smile, which is fine but it’s obviously not the same. So the way I manage my relationships with other humans had to change drastically from my life pre ALS.
I’m not going to lie, I have turned into an asshole and now I do my best to not be one. I communicate only through my eye gaze computer, which is much slower than talking. Somewhere between 15 - 25 words per minute. I can’t participate in group conversations, even a one on one conversation is tough. And sometimes people don’t even let me finish my sentences. All of these challenges are so taxing on any person in a similar situation, and there is really no way to prepare yourself. You just learn and adapt as you go.
What I don’t want to happen is for myself to slip into isolation, where I can’t experience these emotions. So I have to learn different ways to express myself, and it’s quite a challenge. I truly feel that love is the greatest gift that God gave us. Love for your family, your friends, your significant other and ultimately yourself. Without love, I don’t see life being purposeful.
I guess my main thought here is, I want to be a better person. I will work on being a better human daily. I will become a better human. If I have caused you harm or agony, I apologize. I love you all.
Been a while since I’ve written, I've been depressed and stressed recently and it caused me to lose motivation to write. Tonight I decided to pull my shit together and write about something, anything. So here we go, a summary of my last five months.
Right out of the hospital I was dealing with a blood infection that required a two week course of antibiotics, and the antibiotics caused havoc in me. Tore up my stomach and caused diarrhea, on top of getting used to tracheostomy this period was so difficult for mom and I. Some days I didn’t get out of bed and just kept myself sedated. I asked myself every day, what in the hell did I get myself into? Needless to say, I went into a very dark place. A place I never have been and never want to go back to.
In June we went to Dodgers stadium for Lou Gehrig day with my mom, her first time ever. I was so happy for her. The next day we went to angel stadium and was honored to be a part of this special day for all people living with ALS.
In July we went to the movies a few times, and I was finally getting used to my new normal of life with a trache. My birthday was in August and what a special week that was. I had been scared to eat or drink anything since surgery, and I figured why not try on my 40th. Pasta, meat sauce, salad and wine. I was elated to taste again :). My friends and family threw a kickass surprise 40th for me, what a special day that was.
Lately I have been very involved in fantasy sports, watching and researching all the statistics. I find that if you don’t keep your mind constantly busy, you will think about ALS and that can lead to bad thoughts. I also started meditation daily, it helps calm the mind. I can honestly say I am very happy with my life right now, and am glad I decided to have tracheostomy surgery. My body barely functions anymore and it’s getting scary thinking of the future, but I have an awesome care team so I don’t worry about it too much.
My favorite meal is chopped cucumbers, tomatoes, croutons and Italian dressing. Weird right? Not to this guy, smiling from ear to ear! Life is beautiful. I will get back to writing again, I enjoy jotting my thoughts :).