I’m going to try to get back to daily or bi-daily blogs. I know I’ve been slacking a bit. There’s no good excuse but like today I feel terrible. I work up hurting extra bad and a bit confused. After getting my mind together, I realized I must have slept wrong. My right side is killing me right now. My tremors are kind of bad and my darn nose won’t stop running ever (bad allergies I think). Yeah go see an allergist but before I start stacking on more meds I’d like to get mine worked out… Mentally I feel relatively positive but the pain, tremors and rigidity are dragging me down hard.
I personally think the problem is my medication. I don’t think my current regimen is working well or as well any longer. I truly feel the need for a change and think that’s going to make a big difference. My mind still feels fractured and scattered a lot. I still go through days where I just don’t feel right mentally. I guess you could blame it on the disease, trauma, other… but no mater how you look at it. My mind needs as much help as my body. I’m getting care for both but everything seems to just come so slow these days.
Speaking of slow. I’m so tired of having the feeling of forced movement back. These past couple weeks have been terrible. To explain, every motion I make, it’s like I have to make my mind force my body to complete the action. It’s horrible, frustrating and painful. Although I think the pain is just a constant part of my life now. I just remember the days when I could move 100x this fast. I’m only 41 … I can deal with a hard life but sometimes this goes beyond what I can push through. I do have break downs but eventually I get back up, dust myself off and keep moving forward. Lots of effort, tears, pain, frustration, stress and more. That’s life for me so my only choice is to keep trying, keep pushing and keep moving forward.
I’ve been talking a lot with another artist who’s had a difficult time with his health. His positivity and advice have been wonderful. We come from different worlds, different backgrounds but I feel a real connection. The determination and positivity he shows is extremely motivational. His story, the little I know is a compelling one. Through it all he continues to battle life with a smile. Every time I see that smile followed by his voice, it just brings me joy. I so very much appreciate that and hope he knows how much I appreciate him.
I’ve reconnected with a couple local friends. I’ve also made some new local friends. So I’ve had some actual human interaction. It felt strange and wonderful. Even though I didn’t get to leave my box. It was nice having some people over. Although I do get a little worried by my living situation. It’s small, cluttered, hard to keep completely clean. Spacious for an RV, but there’s truly not much space. I have a hard time keeping up with doctors, lawyers, insurance, other random official stuff, house work, trying to keep folks updated, trying to clear / clean out my storage while selling off things left from my previous life to survive, finding any way I can to bring in a little money to live each month, etc, so on and more… I wish I had more help. I have a little from time to time but it all mostly falls on me. So I have to pick and choose from a normal days works what I can get done and what will fall further behind. Again frustrating.
That’s a good word for my life… frustrating. Can’t get my medication right. Can’t get the proper assistance. Can’t get the proper exercise. Can’t find an steady income or get approved for disability (yet), Can’t Can’t Can’t… but I keep pushing forward through the can’t and keep doing the best I can with what I have. The vast majority of what I have has been donated to me at this point. Two years with no income, surviving off peoples kindness is not only frustrating, it’s humbling and to a point will maddening. I think through all the frustration, even though I slip… I still do a darn good job at maintaining this hellscape of a life. There are the short wonderful moments still in life that do help! It will get better I know, it just takes time. I’m just tired, want some normality and security.
On a positive note! I have tons of people that care about me and have helped me along my journey. If I ever have the opportunity I’m going to dedicate my life to helping others like me. In bad situations with little to no outs, desperate and relying on others to survive. It’s no way to live. I know I’m not the first to go through this horrible stuff and I for sure won’t be the last. So in that thought I’m going to do everything I can to get well enough so I can help others.
With that, I’ll call this one done. I’ve got a call from the head doc coming in 10 minutes so I have to get ready for that. Until next time, thank you for following my journey. It’s means the world to me that you’re reading this and care. I truly appreciate you all, MUCH LOVE and Happy Holidays to EVERYONE!