So often taking care of myself means staying home and a lot of time by myself. When I'm home and in my chosen space with Switch, then it's sometimes ok. This week, and through the 19th, I'm housesitting. Not too bad for the money, but it leaves me out of my element, out of my routine, and without access to regular comforts. I find comfort in simple things like my sheets and blanket, my pillow, my art on the walls, and there's no substitute.
I got my diagnosis, for whatever it's worth. I guess it all official or something. I have ME/CFS. I have chronic illness that very few people understand. Someone told me, or perhaps it was on some facebook status, but it was within the past few weeks. To paraphrase, For those of us who learned young to put others before ourselves, Universe will find a way to make us pay attention to ourselves. Yeah. I got that. I'm paying attention now...can I feel better soon, please? So not only did I wind up with 2 chronic illnesses, I managed to get weird ones. At least CD is becoming more known...but I don't think there's a more misunderstood, or a more underestimated or dismissed condition than CFS. No, it's not threatening my life, today. But it is killing me. Every action, every exertion, every expenditure makes me worse. Activities cost more, pain hurts more, and recovery takes so much longer.
This is so difficult to describe. I've found it hard to feel heard and understood, even by my doctor. I was explaining to her all the changes I've made in my life, to slow down, taking an online class, shortening my work hours, building naps into my (most) daily schedule...and she said something like, "wouldn't that be nice, to be able to nap everyday." Fuck, I mean, come on. I've had friends do it to, without meaning to hurt me, I'm sure. I was attempting to explain the very real symptom of emotional lability...in short, when I'm tired I get cranky, weepy, everything hurts more, feels deeper. Yeah, that happens to all of us, I know that. I know I'm not unusual...but does it happen to you after 5 hours of regular low-intensity ADL? Probably not.
And learning disabilities are not uncommon. But do yours get *worse* as time goes on? Daily and over months? Probably not. Do you loose the ability to pronounce words, or to string words together into a coherent sentence?
I save every bit of energy I have. I park as close to a store as I can without feeling guilty that someone might need it more than me. (It used to be my habit to take the second closest spot available...sometimes leaving many closer spots.) I've decided that if I have a flare-up that's anything like last season, I AM going to ask for a gimp parking pass...at least for school. PRN. Dunno how that works, but I'm assuming I'd need at least a Drs note. I take elevators and escalators when I used to take the stairs, and sometimes I rest between my car and class. I arrive early in case I need more time to get there. I will load myself up with groceries because taking more then one trip is more effort. I spend weekends in bed, my feet up with edema...but still trying to get schoolwork done, trying to stay connected with the outside world. The new computer will be helpful and more reliable.
And that thought brings me back to where I started. Taking care of myself means staying home, and friendships and relationships are suffering. I don't feel like I have much support of my community because I am not able to go out as often as I'd like. Yesterday I was wasted, wiped, and I needed to be in bed at noon...but it was 5pm when I crashed in the Whole Foods parking lot for about 30 minutes so I could go to coffee at 7. It was too far to drive home to nap and I needed to see people. I also needed to be sleeping and resting, and feeding myself better. But I couldn't manage to put myself to sleep in the afternoon...and the main reason why? Because I'd be alone.
When I'm "normal" tired, then bed is a relief, but when I'm over tired, wound up, and anxiety levels are high...then I get afraid to be alone. I eat sugar and drink caffeine to try to keep myself going, which only hurts me more. And I'm already alone too much.
And when I'm wound up or anxious, I get pissed off about it. I get angry, I feel denied an active life, I feel like I've been denied the joy that comes from healing others because *I* need so much attention. I feel really sick of myself, and thoughts get uglier...let's just say I dont' practice the most positive self-talk during those times. I seem to get a bit of the teenage angsty "nobody understands me" crap going on. But the adult in me says I don't feel heard or understood. 
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