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May 2011

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I recently heard of the Spoon Theory regarding living with a disability, especially an invisible one. For me this means ADHD, depression, IBS, insomnia, sleep apnea, degenerative disc disease, and chronic jaw pain. Although in a recent meeting with a psychiatrist (BTW the psychiatrist at the WSU counseling and testing center is AMAZING!!!) she's considering a form of bipolar and is really concerned about my early onset of sleeping problems.

I used to look down on people with "chronic"/invisible illnesses especially young people, although in my defense my best friend growing up was a pathological liar so that definitely colored my attitude on the subject. As I've developed more and more health problems I've come to understand how tiring, painful, and isolating having issues such as these can be! While mine are certainly not terribly high on the lists, the combination of them all is pretty bad. I really really feel for people with more serious issues than mine.

My favorite quote is "Nobody realizes that some people expend tremendous energy merely to be normal."- Albert Camus. This is my life. I'm not going to try to explain the spoon theory as I think it's best understood by reading the article. I don't think it's a perfect analogy, but I feel that had I been presented with this idea when I was still terribly judgmental, I would have had a much better idea of how hard life can be for some people. So when you see the state of my house, notice I never wear jewelry or do my hair, skip out on an event, cancel plans, drop my classes, am always late, forget things, etc etc.... just remember, I'm probably low on spoons.


I really like spoon theory. I first found that site while looking up info on CFS and fibro after I was finally diagnosed. It's a good way to explain things without getting to melodramatic.
I actually brought this up to someone recently, while trying to explain chronic fatigue from fibro.

Even after being chronically sick for years, and dealing with fibromyalgia symptoms for the last 9-10 years, I have been... hesitant to believe people about certain things, simply because it's over diagnosed, and it seems like a lot of people use these things to excuse abhorrent behavior (like mental illnesses mean you aren't responsible for your actions) or laziness (I have chronic pain and fatigue from fibro, on top of a slew of other things. I homeschool an 8 year old, run a rocky cast, feed myself, and try desperately to have a social life.)

Mostly because when I've been sick or seen people who were really sick, that is the one thing they play down. People with the worst chronic illnesses tend to be the people who complain the least about the little things.

I hate explaining my group of illnesses to other people. (While I hate laundry lists, Bipolar NOS, IBS, Fibro, PTSD with anxiety, chronic tension headaches, allergies and chemical sensitivies, GERD, a structural problem with my back I'm just now getting fixed (yay phys therapy) bursitis and post-cholycystectomy-syndrome (think I spelled that right) which is a long word for "took your gallbladder out, now your liver is being a bitch, congrats on the explosive poo!" and the whole single kidney thing, which mostly means I have to do certain things to keep my kidney happy) when I talk about these things, I like to first explain a GOOD day for me, IE, "The best day I've had with PCS since they took my gallbladder are the few days I can go to Walt's, have a big, greasy burger, and go to the park, because I don't have to worry about being sick." then I explain the WORST it's been. "Once I took my pill 30 minutes before eating a salad with non non-fat dressing, and then got stuck at the restaurant 15 minutes after eating for 45 minutes because I couldn't get off the toilet" and then explain that most days are an average of the two.

I'm still functional, I appreciate that. I'm on disability, but I can usually take care of myself/my daughter. Seeing other people with worse cases of fibro, I know I'm lucky. But it took a long time for me to be okay with leaving the house with no makeup, or making walmart runs essentially in my pajamas. However, it turns out I can have more energy to have a better, more normal life if I let myself off the hook more often for acting like a tired slob. I tend to think of it as my mana bar instead of spoons, but the idea is the same- I have to decide how to spend my energy.

Also, I bought cuter pajamas. People are more forgiving of you in public in your PJs with mickey mouse all over them than if you wear a tshirt from a casino and some cutoff sweatpants.

Hehe, I LOVE the mana bar association!!

I just went to see someone about testing for ADHD (I can't get coverage through school without a full battery of test, i.e. 6-9 hours, rather than just a diagnosis) and apparently I need to change my laundry list I guess. We're going to focus on depression, anxiety, and try to rule out bi-polar now. Yay.

I think sometimes I give myself too much slack about things, but everyone else tells me I'm way too hard on myself so I dunno. Stressing about if I'm a hypochondriac or not just puts me on an anxiety cycle.

I'm glad you're doing pretty well!! I really didn't mean to drop out of sight, I just kept forgetting to respond and then it turned into a guilt/anxiety spiral so I never did. :(
Listening to NPR the other day: It was a guy discussing bi-polar what it's like to be crazy. Some woman called in and said something like "it's not that you have rational moments, it's that when they come all you can think is 'How long will this last this time?'."
I do get tired of being crazy, but I always remind myself that it could be worse, I could be schitzo-affective and I'm very much glad I'm not. I could be worse than an alcoholic, I could be a crack fiend. I say, we do the best we can and hope that our friends and family understand.