Change in Perception

     Yesterday I downloaded a scientific dissertation to read about fatigue and PSC, the lovely liver disease I have. I'm reading and reading and learning that more women than men experience the fatigue, that it comes with depression-like symptoms but doesn't respond to antidepressants and on interview with a psychiatrist doesn't add up to depression either. I also read that sleep for the fatigue is not "restorative." Now I snagged onto that idea and put some time and thought to it.
     My naps don't really make me feel better. It's not like I jump out of the nap-bed and think, "Oh, gee whiz, now I can do ..." or that I run out of the house and exercise or anything else that would indicate I really felt better after napping. Huh. So, last night finally I asked myself this whopper question, "Why nap?" It just subtracts from my waking hours and doesn't accomplish anything positive.
     Keep in mind also that I have trouble sleeping at night and that goes with what they term "daytime somnolence." Hmmm. I may nap now and then, but it's not part of my daily plan anymore.
     So what's the change in perception? I am no longer putting PSC at the center of my life anymore. There's no need to – now, and perhaps there never was a need. It's difficult to have a disease for which there is no treatment except for transplant. And to be eligible for transplant, you need to be really sick. It's easy to make the goal "oh boy, let's get sick!" But that proves to be a rotten way to live your days.
     It's daily life I am concerned about. The quality of each day is what adds up to a life. I want more creativity, more writing, more love, more fun, more happiness every single day. That's what I choose right now.

Being Tired

      I've been incredibly tired in the past week. I finally remembered I'm taking a new medication (to reduce my chance of recurrence of breast cancer) and it has added a layer of fatigue to my usual fatigue from liver disease. Last night I decided I had to have some concrete goals for this morning or I'd never make it out of bed. So I did it and it worked. I accomplished some tasks, even did some housework, and got my hair shampooed. Little things. But big when I feel this tired.

     I'm signed up for an online writing challenge for February. It doesn't involved much time and just a daily commitment to write – not so hard, right? Wrong! I'm  discovering just how much energy creativity requires. I'm so far below that bar, and I can't remember ever being this low. What to do? I keep writing twice a day. I write what I can to the level of energy I have at the moment. And I have this grand plan to build energy by exercising every day. Build on that. Use it. Set myself up to be creative by reading good books, going to good movies, visiting art museums and galleries. And hang out with other creatives.

     Creativity exists in so many places. A great business idea. A new way of organizing to see a new perspective. Seeing a new perspective and feeling it. Childraising methods that are new and fanciful, whimsical. Writing your own blog. Posting a creative, thoughtful status on Facebook. Lots and lots of places and methods. What is your form of creativity? Everyone has one...or more.

     Back to reading on the couch. Send me a little juice!

Being Proactive

     I'm going to hire a very part-time secretary to help me with all my paperwork. Especially with setting up a new file cabinet I'm getting soon. I have too many bad days to be able to keep up. I'm also hiring my handyman Dave to help me set up my office. I still have boxes to unpack, and pictures to hang, including some big ones! It's just too much for the amount of energy I have. I don't really understand it, but I've had this increasing fatigue for a few years now – a "gift" of the liver disease. I have to get proactive.

     Last week I had a very good week but this week I've already been down two days in a row. I don't get it. Oh, I think I said that already. I have learned this lesson over and over, though: be kind, be gentle to yourself. And that's a message I want you, my readers, to hear, too.

     That's how we should all treat ourselves. I'm not promoting laziness and not fighting back when times get tough. But there are times to "buck up" and to fight back, and there are times that those terms mean something else you should be doing. Like being nice to Number One. When you're hurting for a long time (grieving, in physical pain, worried about how best to help an elderly parent or a child having problems at school), you need breaks now and then to build yourself back up mentally, physically, and spiritually. Sometimes it leads to being able to see a new perspective, recognize a solution you had overlooked.

     I've very happy to report that I found a dietitian on my wavelength who will coach me to be the most well-nourished and happy vegan in the West. When I told her that I tell people that I am a "vegan today," she said that was perfect. She believes in following your intuition (like when I get a hankering for broccoli-cheddar soup at Panera) and checking out how it makes me feel. (Wonderful!) She also told me I need B12 and some other stuff. And she's just so upbeat and friendly.

     I still believe that a vegan diet can help improve my health. Primary Sclerosing Cholangitis (PSC) is not a lot of fun. I have special itch lotion loaded with menthol and camphor that I only put on at night because I smell like a walking ad for BenGay. I have nausea with too much frequency. I take candied ginger for that. It works but I still lose my appetite. I haven't been in the hospital for an infection of the bile ducts (cholangitis) in close to two years, so that's good news. And then there's the fatigue. I'm going to get some help so I don't feel so overwhelmed. Maybe then I can write more, rather than having to do paperwork when I'm feeling well – and that's all.