(Not so keen on the term “little people” but as I don’t have any condition of restricted growth i am not really qualified to say if it is ok with them)

That said, as someone with CFS, I read so much that I relate to in your whole eloquent post. I also have secondary lymphedema as a result of a surgery 2 years ago, so several days a week I have to wrap my leg in 7 bandages and several other layers of foam or over/under wraps. If I’ve not planned ahead and pre-rolled my bandages, it can take more than a half hour just to get my leg wrapped.

Then I put on my clothes, and not only is my CFS invisible, but now the bandages that keep my leg from swelling are hidden, too. But there are a lot of spoons used up just getting dressed. Faced with the long walk into the office to my desk from the nearest available parking area, some days it takes longer to drag my leg and fatigued self to my desk than it did to drive to the office in the first place. And I arrive at my desk exhausted and aching, to be greeted by a co-worker or boss (I have 2 bosses) asking, “Feeling any better today?”

I’ve found that “hanging in there” is about the most honest reply I can muster that is suitable for the office. But some days I’m so tempted to just tell them that I’m NOT feeling better, and that I’m not going to be feeling better no matter how often they ask.

And how maddening is it when people who mean well find out I have CFS, and try to be helpful by saying, “Oh, well so-and-so (insert famous person or person once known to them) had that, and with therapy they eventually got better. “

All I can say is How On Earth Do You Manage Motherhood On Top Of This? Mind boggling.

I have to plan things in advance too. Changing the bedding has to be done -with- my husband, because it’s too exhausting on my own. Even “making” the bed is something I rarely do.

Showers are my “biggie.” Not only is it vertical time (even with the shower chair, which has been a HUGE help to me) it’s a long ass time being vertical, under hot water (cold = PAIN) which makes you drowsy, and it’s a LOT OF WORK. Washing my hair is a LOT of work, arms over my head and pushing, pushing. Washing my body is a LOT of work, pushing, pushing in awkward places. Then after I get out of the shower I have to get dressed (such a task, bending and pulling), dry my hair (holding my arms over my head again…) possibly put on makeup, and then go wherever I meant to go. Only now I never shower before leaving somewhere anymore — I’ve learned better. I only shower twice a week during my healthiest times. I’ve been down to twice or thrice a month in the past, during my worst times.

So, showers are planned. I have Shower Days. I do NOTHING else that requires any physical effort those days. If I’m feeling well maybe I will, but I don’t plan on it, because chances are I won’t be feeling that well.

And the pride. Pacing is key. It took me years to learn pacing. Which interlocks with spoon theory in pretty neat ways. It’s true, life is a daily battle plan. And I don’t mean that in the watered-down way it’s come to mean. I mean, you actually feel like you are micromanaging a WAR, a war against the world, fought with your body. Surveying your resources, plotting a path, assigning resources to different activities, counting your “spoons” and trying to account for when you might be able to count on have a few more and when (such as after my showers, when my legs are visibly shaking and I can’t stand anymore) you know you can’t count on having any, in fact have to -schedule- recharge time…

And the pride is hard to get over, realizing I CAN’T DO THIS ANYMORE! I can’t live the life I used to! (The water is muddied here for me because I’ve had it my whole life — it was never “triggered” — so I never had the wild youth some people are at least able to look back on…) And you have to realize: I can’t do everything I want to be able to do anymore. I’ve given up on a BA myself — it’d take me 10-15 years and I’ve just decided it’s not worth my energy. Not that I don’t want to learn (oh how I miss my time in college) not that I don’t feel these things are incredibly important and useful, but I have to concentrate on things like making myself lunch. Washing my hair. Feeding my cats.

And the depression thing! Ugh. I was once dismissed by a ob/gyn (male, of course) (he was filling in for my normal gyn, a true saint, who was sick that day) as having PMDD — primarily mood-related (and DEFINITELY a legit disorder, but not what I was complaining of in the LEAST!) — when I complained of severe, disabling (in the fetal position in bed all day) menstrual pain. Oh, I still want to slap that man.

Wow. Thanks for linking back to this. And for listening to the rambling. ;)