Wednesday, August 5, 2009


"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)

In peace and Wellness-


Jeanne said...


Writing really is therapeutic. I know I get frustrated when brain fog slows me down but I love it when writing things down helps me feel better and simultaneously helps others. I have found that sharing my experiences can help others and that is very rewarding.

Would tape recording your thoughts help you capture them to be transcribed later? I know I can speak far faster than I can type. Just a thought. I know I get frustrated when I think faster than I can write it down. I hate the feeling of forgetting things that were important.

It's nice to be more active but it is hard to go back to less activity, isn't it? It's like cabin fever sets in or something.

It's natural for it to be harder to think positively when we're sicker. It takes lots of time and practice to be able to focus on the positive more.

People with decades of chronic illness under their belts still struggle with this but it does get easier. I have been chronically ill for 27 of my 40 years. The more coping skills you get, the better you'll feel.

You are right that the sooner you get that "good tool kit" assembled, the more comfortable you're going to be. The winter months can be tough for many people.

It's good that you already know the importance of proper breathing and being in the present moment. That's awesome! Do you do acupuncture? I LOVE acupuncture!

Like you, I use music as a coping tool. (Just check out all the music references on my blog). :) I find reading other blogs helpful too.

For tracking your symptoms beyond the blog, you might want to check out the CureTogether site (see link in my blogroll). They have tracking options there that might help you.

You have already figured out that tolerating "The Abyss" can lead to positive things like creativity. This is huge. You have obviously been busy working at all of this stuff.

Savoring memories is great. My friend Stacy guest blogged for me recently and she touched on this very concept.

Sorry you have no appetite. Know all about smells causing trouble. I relate to many of the symptoms you mentioned... even the hair follicles hurting. I'm sorry you're in so much pain. :(

I hope you get some relief soon.

I wrote you a comment back on my blog (thanks for visiting!) re: the Facebook issue. I think I can help you find some people.



Jenni Saake (a.k.a. InfertilityMom) said...

Jeanne from chronic healing sent me your way. I've lived with CFIDS for nearly 19 years now - basically bedridden for the first 2, slowly working my way back into life over the next several (including a season of contemplating suicide while also facing the anguish of infertility on top of the daily pain and frustration of CFS), leading a "fairly normal but careful/ quiet" life for several more years after that, then a hard crash again in the spring of 2007. That relapse put me almost totally down in bed again for 5 months and we've fought a very slow, up-and-down-again battle, crawling back into a "new normal" life since then, still very sick these past two years.

I'm also a writer and am working hard with my doctors and also researchers to kick this illness for good. My killer T cell count is nearly non-existant now, so I'll be starting IVIG treatments this coming Sunday. I haven't posted a lot about my current testing/treatments yet because I'm just trying to process what I'm thinking/feeling to get it down, but you can read a lot of the "back story" at and I'm also on facebook - Jennifer Saake - and on Twitter as InfertilityMom

Jo said...

Ouch! I feel for you. It's only a year since my diagnosis but I've been ill for much longer. It messes with your sense of self as all the things we build our identity on are taken away.

A couple of days ago I became a rebellious teenager for a day. I couldn't help myself. I was difficult, unreasonable and demanding. It was still me, just an aspect I hadn't seen in a while.

This is hard. There's a great deal to process and these are early days. Jeanne's right, it gets better as you build a cognitive liferaft.

I'm going to email you later with my own tracking device which I do in Excel.

Remember - This too will pass.

At Home on the Rock... said...

Terri...I sent you a friend request on facebook...I hope I did it properly. I sent it through your email

Renee said...

Hi terri
I find writing very therapeutic too. It not only helps me see where I am at but is a release for a valve has been opened and the release of pressure balances me.
I have thought alot about using a tape recorder as I have difficulty rememember what I want to say if I write for awhile and then have to stop and go back. SOunds like a good idea.
So sorry you are feeling rotten again. Hope and pray it leaves quickly. You do amaze me with your persistence to keep finding all you can to help you.
And you write with great depth I think Terri. Your intelligence is very obvious to me in what you say.
Gentle hugs

Daphne said...

So proud of you in so many ways. You are my inspiration and a truly magical person. I hope today is better for you!