"Fool!" my muse said to me "look in thy heart and write." Phillip Sidney
And now that I've written that quote my mind goes blank as it often does with this illness. I need to write. I find it helpful to give voice to the many things that get stirred up living with this. When I start to blog I often have an idea of what I want to write about but I find I have trouble holding onto thoughts so I often miss getting at the essence of what I want to talk about. I've decided to get a notebook to dedicate just to taking notes from books I read, or ideas I have.
I also have to get over the fact that my writing skills have changed. I hope this will change but I used to speak and write using a lot of metaphors. I've lost that ability since getting sick. I find that when I blog I have to write really fast so I don't forget the things I want to talk about but it doesn't work-I forget anyway.
Something I've been reminded of these past couple days since feeling so bad physically is that when stressed or ill its very normal and natural to regress emotionally. I noticed the past couple weeks when I felt a little better and could handle having visitors, getting out in the world, etc...that I didn't feel so affected by things. I felt more a part of the world. Since feeling so ill these past couple days I find its harder to feel positive about things.
It is difficult to return to this state of being after being able to be out in the world like I did. I just hope the depression doesn't return. I worry about winter coming-I seem to do worse in the winter. It's like I've been ill long enough to know what's coming (which is frightening) but not ill long enough to develop a good tool kit. What I do when things get really difficult emotionally is focus on my breath and stay in the present moment as much as possible. I also turn to music and reading other people's blogs, or poetry, or a book.
I need to figure out a good system for tracking my symptoms along with activity levels, the starting and stopping of various treatments, etc...If I was computer savvy I might be able to set up a database but I'm not computer savvy. I think I need to use this blog more to track these things. It's the original reason why I started this blog.
These are some themes that have come up for me since getting sick and I'd like to write about them over the next few months:
Getting hit with a debilitating chronic illness causes most people to fall into the Abyss. It is a very difficult time but depending on how its handled, tolerating the Abyss can lead to rebirth, and creativity. I think this is why many people with me/cfs write books, poetry, etc...But its hard to tolerate this place and not want to numb oneself.
Memory-Mnemosyne-Muse-Orpheus-Now, when I think of my old life it is with fondness rather than grief but the memories I have are precious to me and sometimes I just savor the memory.
Making the invisible visible.
Living with chronic illness and the Underworld
I've spent the day in bed except to take medications or use the restroom. The past two days I've had absolutely no appetite-I'm having to force myself to get anything down, smells make me sick to my stomach, I'm lightheaded when I stand up, my eyes burn, the hair follicles on my head hurt, I can't focus for very long, I've had a severe headache (unfortunately my lidocaine and ketamine expired)-luckily the headache has eased up quite a bit, my brain feels swollen and full of junk, rotating muscle aches.
I think I'm going to follow my doctor's advice and have him write me a prescription for medical marijuana. He said it helps with sleep, nausea, appetite, etc...
I've decided I need to have some fellow me/csf sufferer's on my Facebook page but I don't know anybody's last name to send an invite to. If you are on Facebook and want to connect you can find me using the following email address: cfswarrior(at)gmail.com.
In peace and Wellness-