And I'm back.  One of my doctors' recommended a support group for me and I've been getting support from them.  Hence the name, support group.  They meet once a month and have a secret Facebook page.  I've posted there a few times.  There are two main moderators and one quasi-moderator.  Good people.  They all have home support though, people who live with them to help out, that they can talk to about things.  Everyone has a unique set of medical conditions - we all share the fibro and most have chronic fatigue.  No one has the neurally mediate hypotension though.  Not one.  


     I asked the doctor who specializes in fibro about it, if it's common in people with fibro.  She said that it's more common in people who have fibro than in people who don't have it.  Apparently the constant pain causes changes in the central nervous system so people with fibro are more susceptible to a lot of different conditions.  Yay.  


     My regular doctor has been researching it since I called him Obi-wan back in the fall.  There's not a lot out there, even in the medical world.  A lot of the Rx meds mix with the other things I'm taking or are pretty nasty.  I've got one pair of special stockings (surprisingly comfy but way expensive); I'm getting more when I can afford them.  I get to drink a glass of salt water once a day, it helps keep the veins open which helps keep the blood pressure raised.  I'm on extended release sudafed twice a day and phentermine, they also raise blood pressure.  I SHOULD be flying around bouncing off the wall.  And I should be seeing a difference.......


     My toenails are light purple when I get up in the morning and the arch of my feet are purple.  I'm constantly cold, always and my hands are usually cold.  I have to wear gloves outside, and when I take them off most of the time my hands are still freezing to the touch and my fingernails are purple too.  I'm still dizzy most of the time, and have had some serious "episodes", scary ones.  It's not getting better.


     I'm still twitching up a storm too, and have stuff cramping, the big cramps like Charlie horses.  All the stuff that's been kind of ignored.


     I got home Friday night and faced my entire place that needs to be cleaned.  There was no way I could do anything on Friday night.  Not procrastinating.....I didn't have the energy to make dinner so I had Ritz crackers and an apple.  The fatigue is all-encompassing and unless you've had it, it can't be understood or believed.  Honestly, when I'm not in the middle of it I kind of forget how it is.  


    Saturday, I got up at noon.  The shower needed to be cleaned.  I had been at the store on Friday night, and was looking at shower cleaners.  They are so flipping expensive.  I had come across some Clorox shower cleaner and when I looked at it I thought, "I have a bottle of Clorox cleaner at home.  I remember it...it doesn't spray right, the nozzle is messed up.  I can just get an empty spray bottle and put it in there."  So I got an empty spray bottle, problem solved!     After I got up on Saturday I thought I'd tackle the shower before the energy wore out.  I poured some cleaner from the Clorox from the bottled to the empty spray bottle.  I didn't read the directions because I know how to use it.  I went into the bathroom and opened up the shower door and started spritzing away.  The cleaner was pretty goopy and it was blue, which I didn't remember but quite honestly, it's been awhile since I'd used that cleaner.  Last time I cleaned the shower I just used the Comet powder.  The spray bottle I had gotten wasn't a full-sized one so it ran out before I finished spraying the shower.  I went back to fill it up again, and after I filled it up I thought I'd close up the Clorox bottle.  I went to put the cap back on and realized it wasn't a spray cap.  And the bottle wasn't a spray bottle.  It had an odd angle to it, and the cap screwed on in a different way.....it was TOILET CLEANER.  *sigh*


     I can confirm.....Clorox toilet cleaner does a great job on showers.


     I have very little brain left when I'm tired.  That was pretty much it for the cleaning yesterday.  Today I did clothes laundry and dishes, and I'm exhausted from it.  I need to do so much more.


     I've had my first person pull back from me since I've been sick, someone who I thought was a good friend.  I hadn't seen them in quite awhile.  When I saw them my body was doing pretty danged well.  The pain level was pretty high, but I'm really good at ignoring that, or hiding that it's there.  I was having good walking days - even on my bad days I can walk, and on my good days I can go for pretty long distances, and most stairs or hills are ok.  But I had no short term memory, and was pretty flighty.  When that happens, it really bothers me and I think it probably IS annoying to other people.  I'd hoped that my friends would understand that it's not something I do on purpose though, and the same with my body.  You're right....I don't "look sick", and some days I CAN do things.  Those days are few and far between though.  Most days I live on the couch.  Anyway......I guess the mix of my mind/personality being fucked up and my body having some good days was too much.  All I can do is hope they come back.


     It's now 8:30 and I haven't eaten dinner.  I should do that......