Something that a lot of us chronically ill people have in common is that we have limited energy. A lot of us can only do a small fraction of the thing that “normal people” do. Personally, I only have a couple of good hours each day where I can get out and meet with people, or do work for the SPCA, or even have lunch and shop with my Mom. And if I do that one day, then I’ll probably need to rest the next. And maybe even the one following.
For me, I know a lot of the reason I need so much rest (and have so little energy, a.k.a. “productive time”) is because of the side effects of my meds. I take seven different meds each and every day, and fatigue is a side effect of at least four. Another side effect that comes from individual meds, and the combination of meds that I take, is that my mind is sluggish. I often feel like I’m pushing my way through quicksand when I try to think, to process. That is pretty exhausting, too.
I sleep a lot. I mean, A LOT. I used to sleep for twelve or thirteen hours at night, be up for two, then nap for four or five, and stagger through the last few hours of the day. And when I was awake, I was so foggy, so mired in the quicksand, that my “awake” hours were not really awake, in an aware and able sense of the word.
Now, I have a new med (fairly new, I’ve been taking it since the spring) that helps to banish some of the murkiness and feeling of slogging through quicksand. It doesn’t take it away, but it allows me to have at least a couple of hours a day that I can write, or go out, or do housework, or whatever. And I don’t need to sleep so much: about ten hours at night, and I usually go two or three days without needing a nap. It might not sound like much, but it’s been a huge improvement to the quality of my life.
When I first had my breakdown, I didn’t sleep at all. I rested a lot, and I did probably fall asleep for wee catnaps, but I was desperate for sleep. Psydoc finally found a combination of meds that let me sleep (forced me to sleep) on a regular basis. My sleep today is not particularly restorative, despite how much of it I do. I think that my need for ten hours of sleep to be able to function is like the “normal” person having five or six hours of sleep a night for a protracted period. They can manage, they can get through their routines, but damn, what they’d give for a good night’s sleep. For me, a “good night’s sleep”, in terms of quality and not quantity, is hard to come by.
I’ve also found that I resent having to sleep so much. Not so much at night, but I fight and rail, tooth and claw, against having to nap. Another issue for me to work on. It’s a struggle to accept, especially when I was always on the go, constantly, before my mind finally forced me to stop.
It’s hard for many people to understand that I don’t have an unlimited well of energy to draw upon. My well is rather shallow, actually, and I have to save up the energy for a lot of days to be able to spend five or six hours at someone else’s house, or at a fundraiser, or wherever. And then the well is dry, and I have to spend a number of days letting the water rise again so I can do even the basics, like have a shower or cook a nutritious meal.
Anyway, something that I found immensely helpful, not only for my loved ones, but also for myself, was something called The Spoon Theory. Christine Miserandino of www.butyoudontlooksick.com is the one who created it. It is a way to explain to people who don’t have a chronic illness what life is like when you have one. It is a fantastic story, and I would really, REALLY encourage you to go here and read it. It will truly help you understand, and is better expressed than I could ever hope to do. So go. Now! Read it!
A former lawyer, Linds of The Muse Asylum spends her days carefully. She balances chronic depression and anxiety with her love of written and oral advocacy. Her passions include promoting animal welfare, preventing the abuse of children, and using her own experiences with mental illness to educate others.Read Full Post | Make a Comment ( 7 so far )
Are you enjoying Invisible Illness Week so far? We had over people at our workshops LIVE today so we are pretty enthused. You can also head on over and join our Invisible Illness Week “Hub” in the Sunroom, Rest Ministries Social Network, where you can blog, post discussions, mingle with others with illness, and even post photos or your favorite song.
Here is one thing to think about… what do you want to get out of the conference this year? First of all, go register so we have some idea of about how many people may be joining us for different seminars. It’s not mandatory… but you get a few goodies if you do.
One is this cute little card to print out and place on your desktop, that says, “My hope for this week is…” Think about what it is you are hoping for and place it on your desk. You can write notes on the back or on the downloadable stationary too. And the desktopper also has the URL where you log in to hear the conferences, so it’s always easy to find.
Secondly, what questions do you have for the guests? If you go to the speakers page, there are some guests who are taking questions in advance. You can just email them straight to them. If the guest you have questions for doesn’t have a link yet, that’s okay. Write them down so you have them handy. Each presenter will be taking questions at the end of the seminar, so you can send them to us then. Or… you can even call in like a talk radio show and ask them.
We may have more questions than we have time for, but we hope to have some of our speakers answer them in future posts here at this blog.
Christine Miserandino, founder of butyoudontlooksick.com (and the “spoon theory” gal as also fondly known…) joined me (Lisa Copen) to kick things off on Monday morning, September 8th, 2008.
This was a casual, fun time to chat with us gals who have lived with illness, are coping with the challenges of motherhood, who have used our illness to build very unexpected career paths, and who know what it’s like to be told, “but you look fine!”
Leslie Vernick gave us a wonderful presentation on dealin with hurt feelings and how to discern what relationships are healthy and what are toxic.
Maureen Pratt tried to join us at 3 p.m. but neither Lisa nor Maureen could get into the Blog Talk Radio line. Evidently the phone number was “so new” AT&T didn’t yet realize it was a real number yet. We’ll be rescheduling her soon, so watch here for details.
Jacqueline L. Jones gave a great presentation on alternative treatment options and how to pay for it if you find you want to use that option.
Thanks so much for a successful first day! Looking forward to tomorrow.
Click here to listen. All programs are archived!
LisaRead Full Post | Make a Comment ( 1 so far )