05/02/2024
First, I’m at home and doing well. This picture is a week old but it’s a pretty accurate description of what I have to deal with lately. I had an issue with my bladder, but I’m much better…
Anyway, I’ve worked hard to not lose myself during the shredding of my life this last 6 years. It hasn’t been easy.
Just a quick recap for the new people: I lost the love of my life to colon cancer and 8 months later I received my diagnosis. Since then I’ve lost pretty much everything. House, career, cars, pets, and even friends and family are long gone. I’ve had to move halfway across the country. I’ve spent so much money to slow my progression it’s ridiculous. If it wasn’t for my love of my daughter, and my brother’s love for me, I probably would’ve checked out years ago.
So here we are…
I’m pretty much a quadriplegic. While I am still able to move some body parts I’m unable to do anything except drive my wheelchair into and out of my van (on a good day). I’m a rag doll although I feel like I’m made of stone. I’m not in any physical pain. You should know that.
I haven’t spoken in a year. I can still say a few words or make a noise in an emergency but otherwise my tongue has atrophied and is useless.
I eat through a tube 95% of the time. The other 5% is me playing choking/aspiration roulette with food because I’m stupid. I drool so much that I have Botox injected into my salivary glands every 2 months, and it hurts like hell. My digestive system is probably operating at 50% because muscles are required to p**p and mine don’t work. We don’t need to get into that. Oh, did I mention the catheter? Yep. That was my parting gift from the hospital. I’d like to tell you that you eventually get used to having a tube shoved up your business, but nope. Maybe it’s time for another podcast?
I have absolutely no idea how I’m still breathing independently. Maybe it’s because of ? I use a bipap when I sleep but never during the day. So that’s a good thing, but I know I’m pushing the limits. I’ve thought long and hard about getting a tracheotomy. I’m not ready to die but I don’t know if I want to live like that. It’s a lot to consider. For now I’ve drawn the line at that.
I’m still very cognizant. At least I think so. I’ve definitely slowed down. The muscles in my eyes are getting weaker and I have a difficult time shutting my eye lids. Unfortunately the default is to want to stay open so my eyes get terribly dry. As a bonus, my tears burn like acid if I cry. Double bonus is something called pseudo bulbar. Basically my emotions are crossed up and overcharged so little emotions are amplified and I cry when I should be laughing. It sucks.
After 5 years of this, I’m pretty burnt out. February doesn’t help matters either. I’m not sure exactly how things will wrap up but it’s safe to say that Happily Ever After just isn’t in the cards for me. Fortunately, I’ve lived a pretty incredible life.
When you have such a vicious disease like ALS, you hear a lot of words thrown around like warrior, inspiring, don’t give up… I understand everyone cheering for me. But I also know that I’m a cautionary tale. If this can happen to me, it can happen to anyone and that’s scary s**t. I think what I’m trying to say here is that I’m starting to suffer, and I’m not up for that.
Am I depressed? Hell yes I am! It’s hard not to be. I’ve tried antidepressants and they just create a fog. Yes, THC is great for helping my muscles to relax but I don’t like being stoned. It’s a difficult balance and ALS being a neurological disease, THC and everything else affects me differently than most. Micro dosing psilocybin has been the most effective therapy so far. That and caffeine keeps me going and smiling while being somewhat stable.
Alcohol is a thing of the past. Of course I probably drank enough for two lifetimes, but as a restaurateur I felt obligated to make sure that everything we served was up to your standards. Yeah, quality control… but now I I’m just a cheap date.
No, there’s nothing anyone can do to change this. It’s a lot of mental fatigue and frustration. As I was saying before, I’m not in pain but my body continues to simply shut down. Also, I’m bored to tears. I have plenty to keep me occupied but I’ve never been one to sit still. I don’t want to be busy. I never planned to be retired because that’s not my style. I dunno. I’m sure I’m rambling a bit…
I don’t know how things will play out. I don’t like the word “quit” but I’ve definitely moved to a more go with the flow attitude lately. Maybe things will change but I’m pulling back from the “fighting“ mindset and just enjoying the ride I suppose.
I know this is hard to read. I promise to go back to sugar coating things but it was time to pull back the curtain a little. It is what it is.
I love you too 😘🍻🏴☠️
