Much of this cancer game is about learning to live with limitations. I realize that for some people that is a lifelong process, but this is a new issue for me. I retain ambitions that it might not be permanent. (from http://jaylake.livejournal.com/2002667.html)
I think the biggest problem I have is that my mind has not until recently been impacted, nor have my senses of smell, taste, or touch. Pain isn't easy, but it's something I can fight with, work through, and somewhat placate with medication, exercise, heat, tens, etc.
Not being able to eat enough even though I'm forcing myself, running outside for air and ginger during dinner with friends, and nearly passing out at the grocery store due to the smells is infuriating. I've mostly adjusted to the uber low carb diet; but this isn't right - and because of the dietary limitations things like Ensure aren't options even if I could get them down. Thankfully cheeses are almost always ok, otherwise the alarming weight loss of September/October would be continuing.
I'm used to sleeping six hours a night, waking completely rested and energetic, and charging into my day. Let me tell you, I can get a lot done in eighteen productive waking hours per day. Day jobbery. Writing. Parenting. Household chores. Pleasure reading. I'm down to about fourteen or fifteen waking hours right now, and losing about two or three of those to spoon management. It's like losing a freaking hand or something, in terms of impairing my productivity.
This is something I struggle with too; although at least with adderall I'm only sleeping 10-12 hours/day rather than 14-16 without. It appears that isn't going to get any better, so I'm constantly behind on one or more things.
But mainly, I'd like the Candidia to go away now (seriously - it's back in my throat/esophagus again), and I'd really like to know what's causing the memory lapses and blanks. I am beginning to relearn how to cook and sew and type when I can't feel my hands; I can work around the hip and shoulder pain; I can take replacements for the Thyroid/Adrenal stuff; I can be cautious about contact with people and supplement my immune system with meds and healthy eating. But my mental acuity is not up to snuff, and I'm having a hard time learning how to handle that.
One day at a time. Keep writing and thinking. Be thankful for the wonderful friends and family who help me when I need it. Remember to live life, not my illness.
Call Doctor on Monday re: other options for Candidia, ask about Lyme test results. Try to be patient while you recover from the Lyrica reactions (the smell and taste problems should go away in time). See Neurologist next month.
And one more thought from jaylake In other news, I'm mulling a post on cancer, stress and my atheism. It seems to need to be discussed — even my clinic is advising me to support my spiritual side through my faith, which seems to considerably privilege religious belief. I'm not planning to make an issue of it there, not at all, just wanting to answer the implied question, which was explicitly voiced by an acquaintance who recently commented, "I just don't understand how you can do this without faith in God." (from http://jaylake.livejournal.com/2003874.html - note this post is NSFW if your work frowns on writing about sex)
I too get similar comments and questions; I appreciate that you may chose to believe in God or gods or whatever belief system you practice. I, however, do not believe. My faith is in myself and my fellow humans; that science and logic, research and medicine will help me. I believe that the world is what we make of it, and that our time on earth is all we have.
Some days I've been failing myself and those around me by not making the most of that time. I am striving to do better. Eventually I will know what's wrong and how to treat it, which will no doubt make all of this seem like a waste of time. For the time being, this is one way in which I live.