As I have described in details my challenges being in-between deaf-blind in this blog, a new added dimension of challenge has been added. Although I have had kidney disease for 32 years, I was at a low toxic level that the affects were minimal. I couldn't become a professional athlete, but I was still highly functional that it didn't slow me down. About two years ago, my kidney function took a nose dive to a scary level. I just hover above being put on a transplant list. The zone where you are not bad enough, but your health is affected greatly. I am fatigued and in a fog most of the time, I had thought if I just ate better, took more iron pills or rested more, it would go away. Not quite that easy. I had to find something to keep me going, a focus that could make the challenges be in the background. Ironically, it was something that was with me all along. They had more to give to fulfill my life.
Kidney disease is complex. Your life changes drastically and even when you finally understand this, the daily management of your life needs to be micromanaged to the day, the hour, or to the minute. Life is managed to every single item in my day. I need to carefully watch what I eat. If I decide to deviate from that, with the mindset of "oh this one time won't hurt," I pay for it dearly. I have to watch my activity level. If I use a muscle, joint or even a bone too much, I'm in pain for a few days. Pain, nausea and fatigue are nearly daily. I live in a fog that I have to use a lot of mental power to overcome. My clear thinking fades in and out. Any mental energy left over is used to overcome my barriers in my vision or hearing. Creatinine, one of the toxins that builds up in your body with kidney disease, causes memory lapse and focus problems. Every day, frequently at work, I have to redirect myself to get back on task. It is micromanaging myself. This never was an issue before since I had a talent to focus before. Concentration is difficult. I get burned out daily trying to over come these additional obstacles from kidney disease. I keep going. Where I find the drive? I have no idea, because my performance at work isn't that pizazz I once had. I have always thrived to be an over achiever. Today those efforts are not apparent to people. I'm putting out more energy now, but my results are not what they once were. This is hard, very hard on the psyche. Life and social acceptance is about performance and how well you socialize in the politics. I just don't have that ability anymore. That's hard to swallow when you were so use to impressing before, as I no longer stand out. It is crucial that I find my own joy, find my own world and I have found it, it has been with me all along.
When you solve one issue, one comes right after quickly that you don't have time to rest or put it aside, you must deal with it now. This means you prioritize your life. This also means you will irritate others around you. When you had the energy and focus before to fix things or smooth things over, it now has to be tossed aside. Your focus now is survival. No longer can you have social graces anymore.You have to watch your energy meter.
Cover up becomes a default behavior. This is social survival. You can't let people know how bad off you are or they start patronizing you, judging you or demeaning you. They see you look fine, and think you are trying to milk it, or gain more attention. The attention I want is to feel normal. I'm trying hard to regain what I had and it is falling apart. I learned how to cover up, unknowingly as a disabled child to fit in to the world. People expect you to act or perform a certain way, and when you don't, you are labeled socially inept, or someone that isn't apart of the "in group". Even though we think if "in group" as in middle school or high school, I find adults still follow these social patterns of their rules of accepting or rejecting you. Adults can be brutal. So with this adversity, I must seek joy. I need to create my own life and my own haven.
It sucks I can't hold myself together. I have a full-time job, that for someone with my disabilities is really challenging. I need every impulse of energy to focus on trying to be productive. I come home exhausted. This exhaustion is met with despair as my house has so much clutter, I become overwhelmed. I can't keep up with regular maintenance of my house. I remember how in college, what a neat freak I was and kept everything in order. Now I can't.
Doing nothing isn't apart of my nature, but when you are this spent, it starts to become apart of your life. This vicious cycle of feeling horribly guilty for not doing, not cleaning a house that is so overwhelmingly messed up, and the need to sit and rest. I now have to accept doing nothing as apart of my life now. Getting over this reality took a long time. Admitting this enables me to manage myself better. So many times I would get up to clean, to only have fatigue set in and I wanted to sit down. Sit down in a house so messy I dissociated from my life.
My life right now has changed drastically that I have to carefully plan enjoyment in my life. Most enjoyment has been sucked out of my life. I'm burned out of life because I need to put even more effort in extracting joy in my life. With the combination of vision and hearing loss along with Kidney disease, I now feel like a handicapped person. I've had to learn the meaning "work smarter, not harder" to feel life is worth living. It is sad that my life now is about "is it worth living"? Oh no worries, I'm not thinking of suicide and far from it. I just have to work harder in finding joy than ever before. Joy was easy to find before, now I have a mange myself appropriately and plan carefully for joy in my life.
Some days I'm not with joy. Finding and managing joy is exhausting work. I give myself a rest. During these times I noticed people tend to be a bit distance or judgmental of me. I have no energy to tend to them to smooth things over. I'm spent and because I'm human, I'm cranky and my tolerance level is low. This means I have a very small pool of friends. Before, I could over come barriers, I could find that extra umph to connect to others. I had the energy to please other people. I don't have the energy to please other people anymore. Sadly, if I am to connect to others, they need to come reach out me. Which very few people are willing to do. They think I'm "normal" and how dare I expect them to do the work, but they have no idea how spent I am.
My social life is predominately on-line. Some would say that is sad, but when you fight fatigue, it is a blessing to have it. Sadly, my writing suffers more and more each day. I also notice that I'm becoming more of a social outcast. When I think I'm writing a certain way, people are taking it another way. Editing is exhausting for me now. It is a state of exasperation of I don't have the energy to read or write well, but I want to socialize. No one understands, they just make judgements. Then I'm in isolation again.
I keep trying to find light. Something to keep me going, something to look forward to in life. I have had dogs for 27 years, and they have been a big part of my life. I never realized they could give me more joy I had been seeking. While everything around me was falling apart, they were there to give more. My activities with them in nose work, is so meaningful. I tried competition obedience, but it left me frustrated. Mostly the precision and perfectionism got to me. I needed a sport to enable me to measure my progress. A dog sport that I like and my dogs love. I found Nose Work. A civilian sport that simulates drug or bomb detection dogs. The dogs search for an essential oil of either Birch, Anise or Clove. Each competition level has a level of hides and problems for the dogs to sort out.
Doing Nose Work makes me feel I can do something when the rest of my life feels like it is falling apart. I post often about my Nose Work activities on Facebook because it is the one thing that makes me feel I'm not completely handicapped. It gets me out the door and moving my body with purpose. It enables me to feel I still have a life and something to live for while I struggle with kidney disease. This focus enables me to over come travel, over come my vision, over come my hearing, and over come fatigue. My vision does interfere with how I work with my dogs in Nose Work, but I truly believe there are ways around this, I just have to find that right magic. I know it is there and I will feel that i have tapped into something marvelous. My dogs are my life. They enable me to feel the joy that has been robbed from me. Being successful with them enables me to feel less handicapped. It makes fighting kidney disease easier, that life has meaning again. There is hope and i found my life.