I think everything is finally setting in… I woke up at 3am in a panic, went back to sleep or tried (hard to tell), back up at 4am in a panic, chest tight, mind racing, confusion then set in and I sat on the floor in front of the heater for awhile finally trying to read about a Soviet cosmonaut. The ironic part is the story was filled with anxiety and uncertainty, yet somehow calmed me a bit. Then I felt something I haven’t in months… hunger. It was short lived but it actually felt good to feel hungry. The norm is nauseous and never hungry. It was kind of short lived because all I could think about was biscuits and gravy or bacon and hash browns. None of which I have, nor could cook in my current living situation. My hunger was fleeting so I had a toasted sandwich. It was ok and then back to feeling ill… but that’s the norm so I was happy to get food down. That seems difficult at times these days.
Being uncertain about your life is scary. I hope none of you ever have to go through this. I miss the strong me, who rode mountain bikes, hiked and climbed, jumped out of planes. I can’t help but think about the shell of a man I’ve become through these last couple years. Loosing my self worth, battling the darkness and essentially fighting for my life. All to find out the fight will have to continue for an unknown amount of time. Seemingly years…
What do I really want to do… just lay down and give up. It’s the easiest choice. Am I going to do that, no. I don’t have that option. I still have one little guy that depends on me and giving up is selfish and inconsiderate to those who are willing to fight for you. I’m not ready just yet to live for myself but as long as I’ve got such wonderful people in my life I’ll keep pushing forward.
So I’m now left with the biggest up hill battle I’ve ever faced in my life. The question that rings through my head isn’t are you going to make it, that’s simple. I’ll make it as far as I make it. The question is how… what thing, factor, person, situation, information is going to allow you to live with any decent quality of life until the government and lawyers figure out MY life. At the current time I don’t have that answer, it not only extremely scares me but also triggers my Parkinson’s in a major way. Especially with the world being in such disarray. Pandemics, battles in the streets, death counts higher than ever, wild fires raging in every direction around me, the air filled with smoke, trapped inside a trailer that’s not air tight. This makes all the support systems that are in place infinitely harder to get their assistance. Half the places aren’t open, the other half are on restricted schedules / visits. I’m unable to get proper exercise and care for my disease / other medical issues. Not being able to even go outside for a extended period of time to just sit adds even more stress. I could go on but at this point the picture should be fairly clear.
So to recap, I’m trapped in a broken down smoked filled box, extremely ill with an incurable disease, unable to fully care for myself, with no income while lawyers and government officials basically decide if I live or die. This does not make me feel good in any way.
What I am thankful for is the relief friends have given. I’ve found a couple people who are trying to help me navigate. Unfortunately I get overwhelmed and confused easy so that’s difficult. I do have enough food to keep me alive. All the donations are buying me bits of time little by little and that truly means the most. That gives me breathing room to hopefully figure this stuff out. I have medical insurance that pays for 99% off my medical needs ONLY. The biggest thing is finding some form of regular income to get me back on my feet so I can improve mentally/medically to a point I can hopefully return to some form of work.
I think I’ll end this on the positives. Things aren’t all bad and they have improved but my journey is still long, hard and I don’t know if I’ll make it… but I’ll keep trying until I can’t. Also realize that life isn’t all sunshine and flowers. So if you have a hard time understanding my challenges and journey that’s ok… you can move on and forget I even existed. That’s your right and my pleasure.
Until later, much love everyone and be safe ❤️🙏
#parkinsonsdisease