Who Has Time to Be Sick?
“There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.” Henry David Thoreau
Last week, I completed and released a new video, Fairy Tale Love. I had three phone/skype interviews surrounding the release of the new album. I dealt with icky website problems. I made a new splash page for the website. This week, I packed up and mailed 50 CDs and rewards packages for my Kickstarter Angels as I refer to them. (Dave, my other angel, graciously went to the post office and filled out all that paperwork to mail each one-especially overseas customs forms!) I released a new album on Tuesday. I updated my website to reflect all the changes. I started planning for an event to release the album. I just finished and sent out my monthly museletter. Next week, I will be going to LA for an awards show as Aoede was nominated in 3 Folk categories… Who has time to be sick?This is what is running through my head as I fight and prolong my daily nap, wanting instead to focus on what brings me joy, choosing to put all the energy I have into my music and staying connected. It takes a toll. I know some days, especially when I am up late nights-sometimes due to Prednisone, sometimes due to very late/early evening naps-I should do less, rest more; that it will all be there when I wake… or the next day. I’m sure some of you can relate. This quote about the work you do while you procrastinate resonates with me and my path. My path is a labor of love-and I suppose I am instead procrastinating naps, feeling crappy and all that accompanies DM… not bad things to procrastinate!
I am feeling positive and encouraged at least. I have been receiving so much positive feedback on the video and the album so far that it makes me truly believe I am on the right path. I have heard from some of you that my story inspires you and your children, gives them hope for their future. Here’s a perfect example:
“Take care and thanks again for giving us some more hope that Eldon will also be able to accomplish amazing things in his life. We look forward to seeing all the great things you will continue to do! There are a lot of moms in the support group commending you on your amazing accomplishments and you have given a lot of moms a lot more optimism for their babies’ futures 🙂 xoxo”
I am beyond humbled to give moms and others optimism, and just pleased that I can be a muse to those going through this; that I can support, inspire, offer hope, and connect with you.
“There are no limitations to what you can do… except the limitations of your own mind!”
My most pressing question or issue right now is how much is too much? I remember walking this road before, when I thought I was managing the DM best I could in June 2010, or perhaps then I just didn’t know that my body was even capable of rebelling to the point of quitting. It used to be that I could just say, “O.k., I overdid it this weekend. I need to take it easy and rest a lot this coming week.” I’m at a place now where I am just not sure what my body will do if I continue to push it. How many days can I put off taking that nap? How far can I walk outside without feeling pain later in my hips or legs? For how many hours can I be “in the world” without being exhausted? As I noted before, in February, I started a new treatment, Rituxan, and just this week started reducing Prednisone, but oh so slowly: 1 mg a month. This will take many months as the rheumatologist wants to be conservative. So while I want to keep doing the things I love, I need to recognize that there are limitations (are they in my mind and my body?). The difference is now I’m not living in fear of them anymore. I choose to spend my energy now and don’t constantly ask myself, will this bring on a flare? There’s a fine line, and I hope I don’t cross it… again…
So far my body answers these questions for me. It is pretty simple. Extreme fatigue or depletion hits and then that’s it. I realize I’ve done too much and then need that extra rest. Sometimes too late. Would I change anything I’ve done? I don’t think so. I’d rather spend the energy I have and know that this is not just my joy but also my healing path. A friend suggested one idea for me to consider: taking one day off a week. A day that is just for reading or playing or watching movies or spending with a friend. Novel idea. I think I will start with a few hours and eventually work up to one full day!