NICIAW Post 6: The Spoon Theory

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!

NICIAW Post 5: Anxiety and Facing the World

I’ve written mostly about depression this week. It’s hard to write about my anxiety, especially at a time when I am at a really high level of anxiety, which I am right now.

My anxiety adds a whole other dimension to everything else I’ve written this week. Anxiety is an energy waster. I’m going to write more about energy tomorrow in The Spoon Theory, but for today, I’ll just use this analogy: Think about a big pot of water on the stove. Imagine that this is your water for the day, for cooking and cleaning and bathing. You turn on the burner when you wake up, and you leave the burner on all day. Even if you never take a drop out of that pot, at the end of the day, you will end up with less water than what you started with. That’s what chronic anxiety is like. A constant simmer of worry or dread, that is always happening in the background, wearing you down. Even if you’re not conscious of being anxious, you are still wasting energy.

Which is not to say that there is any fault or blame to be attached to a person who always has a low level of anxiety simmering away. Everybody knows what it feels like to be anxious about something; imagine if you had a feeling very similar to that, but ALL THE TIME. Trust me, if people who have chronic anxiety knew how to make it go away, we would give all our fingers and toes, and maybe even an organ or two, to do it.

So there’s this constant level of anxiety going on. Then there are the specific things / tasks / people that cause a spike in anxiety. These can be anything. For me, hearing the phone ring provokes panic. If I have to make a phone call, I will often have a panic attack. You will never know that when I call you, however, because the Mask will be firmly in place when I pick up the phone. Which will make some people sceptical that I am truly phobic of the phone. But I am, and whether they accept that or not, it’s the way it is for me.

Other things that provoke anxiety for me can include having to leave the house, thinking about having to interact with people. Or even the thought of having someone look at me. If ebay sold an invisibility cloak, I’d buy several. Sometimes it’s a clutching fear that something bad will happen to my dog, that I’ve poisoned him with the bug spray I used the other day to ward off the spider invasion, that I’ll never be well again, that I won’t have enough money to get groceries at the end of the month, that my parents will die and I’ll end up homeless and alone. Some of these fears are not rational (some are, though); knowing that they are not rational does not make them go away.

Again, in some people’s reaction to chronic anxiety, there can run a thread of “well, just get over it already!” or “that’s a silly thing to worry about, so why don’t you stop?” As I wrote above, if I could do that, I would.

I’m not going to write much more about chronic anxiety. Just imagine, if you would, how all this background static of anxiety adds to the effects of chronic depression and the side effects of the meds and the mind games we all play with ourselves about expectations and what we should be doing and accomplishing and being. And then, suddenly and often out of the blue, there is a big explosion of fear and anxiety that is right in the forefront of everything. And imagine that this happens many times a day, sometimes. It sounds debilitating, no?