About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, December 28, 2012

Friday Tidbits: ER & Sleep Survival

No one said it had to be an UGLY duffle bag and you never know: TJMaxx just might carry one!  (And the FDA will spontaneously change their minds about Ampligen tomorrow!)

"It's Friday Tidbits time, it's Friday Tidbits time..."  I'm so sorry I can't write out the music for the musical score (in my mind it's sung to "It's Howww-dy Doody time, It's Howdy Doody time...") but I'm just so thrilled that it's Friday again.  It's been a rough week.  And, yes, I feel as if I'm saying this with more and more frequency each week.  I'll need to work on that: sorry!  I'm hoping that once the holidays are truly over, once the remodeling is done, a cure for CFIDS/ME/CFS and fibromyalgia is found... now THAT'S mighty depressing ... sorry again!!!

But in true, recent family tradition, I made it to the ER yet again.  Old news, right?  But there is some NEW news that I've been holding back until today and that is: this time it went well.  Miracle of miracles, it was as if I had an acute problem, as opposed to the way I usually feel that I'm treated, as the patient with the chronic pain/illness and some sort of murky problems, thus deserving of bad treatment.  Usually, half the time the staff is totally unaware of what fibromyalgia is (or that it's not a made-up illness, as in Kiliwonga Disease, a disease I just made up this very moment) and can't get their heads around it.  Yes, the commercials for a certain medication which features fibromyalgia has gotten us onto the radars of more John Q Citizens knowing about the painful "syndrome," but I am beginning to think that those who work in hospitals do NOT watch TV, so that's not much help.  Forget about them understanding anything about CFIDS/ME/CFS - now THAT is certainly asking for too much. Instead, once the "F" word or the "C" word are mentioned, the staff starts to talk in very loud voices, confusing who is NOT "getting" it.  I feel like telling THEM (and sometimes do) that THEY are the ones with the comprehension problem, not I.  And no, I don't say a word about the loudness until I can see that they could care less about learning anything about these illnesses.  You'd think that after going to the same two hospitals for the past 30 plus years, they'd have learned quite a bit by now, but that is definitely too much to ask for! 

At any rate, the ER visit after the festivities around my bed (because I was too sick to make it downstairs for either Christmas Eve dinner or Christmas Day dinner) we needed to have an ambulance come out to "fetch" me to the hospital.  The men were nice enough, but insisted on seating me in a chair they strapped me down into with the consequence being that my BP kept falling down into the toilet and the men had no way of hearing it at all.  (They didn't see the humor in my "Oh, I must be dead!" joke, humbugers that they were.) They minded me not one iota when I tried to explain that if they could just pitch the chair to at least a 130 degree angle, I wouldn't be getting sicker and sicker with each step and that they might then actually be able to register a BP reading.  By the time I got to the hospital, my BP was on the other end of the spectrum, high out the wazoo (for me) all because of the sitting up part of the adventure.  They've also obviously never heard of POTS or Orthostatic Intolerance.   But they were at least NICE, which is something I always cherish since "niceness" just isn't done much these days, anywhere, anyway, by anyone, or so it often seems.  

But it's time for the Tidbits part of Friday, so on with those bullet points we've all become so fond of (I hope):

  • In trying to reason out why things went so well on the ER front, I finally figured it out, though it took me a few hours once I got home. (The brain's always the first thing to go!)  The very first nurse who attended me was a guy I used to know, the carpenter who'd done quite a bit of work in our house decades ago.  He's always been very quiet and reserved and I think that this new job suits him well and vice versa.  Anyway, he was my first nurse when I arrived and didn't insist on taking my history, seeing how ill I was, willing to wait the two minutes necessary for hubs to park the car and get to us.  Sooo refreshing!  Upon seeing him, I said, stupidly and goofy enough, "are you my G?" and I think he might have been the charge nurse for the early AM hours.  I absolutely believe that he set the tone of the visit.  He didn't yell as he spoke, but was quite quiet and would kindly ask others to lower their voices (gasp!).  
I think that just as a nurse can put a negative spin on how and what things happen as a result of their reportage to the subsequent doctors who see you, while others put a positive spin in their report, G must definitely have put a positive spin on things.  He most certainly knew that I was sick even back when he worked in and around my house and knew that there was no "game" or scam going on.  It's a bit hard to hide or fake illness if you have the same people coming to your house on an almost daily basis for a year plus.  So, I was very lucky with the ER this time around, no snippiness or outright hostility going on by any parties involved.  And I was given pain medication which helped me A LOT.  For the first time, getting a CT Scan was a problem, until they pumped me of something that made me sleep very nicely, thank you ever so much!  Oh boy, how I wish I had access at home to whatever they gave me: it worked well with giving me pretty refreshed sleep, certainly better than I normally get with my very best sleep.  Anyway, onward...
  • I've resolved that from now on, we are going to be realistic and understand that my ER visits can happen very quickly and, truly, with little warning.  So, I'm packing a small duffel bag (or some such) to be put in the front hall closet along with a few necessities.  Now, what kind of necessities could possibly be needed for an ER visit?  Ummm... earplugs and eye mask are definitely on the list, because if you don't go in with a migraine, you'll certainly  have one well within 30 minutes of appearance, absolutely guaranteed!  The blankets and towels we kept putting on my face to shield my eyes from the light (and why is it that staff has no clue that light hurts like heck when you have a migraine?) made little difference.  I most definitely need earplugs to protect my ears from all the noise that everyone seems compelled to make.  And what IS it with the noise?  Do they think it is their God-given right to make as much noise as possible, thus making anyone sensitive to sound feel as if they are living in one of Dante's rings of hell - and I know that I can't be the only person in the ER sensitive to sound!  When I remarked that no one there could ever work in a library, hubs proceeded to tell me that it's been forever since I've been in a library as libraries appear to be as loud as malls these days.  So again, what's with the noise everyone insists on?
I also always forget to pack shoes (I DO have more important things on my mind if I need an ambulance to drive me all of five minutes away!) and when we arrived at the ER door in order to leave for home, it had started snowing.  So, shoes are a must-have for that bag, as well as Dove soap.  Anytime I wash my hands or indeed any other part of me besides my face, I break out in a rash, so Dove has to be taken with me.  (We're not talking big bags, but enough to also hold my Kindle and iPad ... you never know when I might be inspired to write a post!  Haha!)
  • And finally, I happened to mention lamps with toggle switches last Friday (see link here) for easier access to turning off your light at night, especially if you are an insomniac. (Plus see one viewer's comment for the touch pad after the aforementioned post).  Hubs actually found the lamp I needed once he read my post and so I'm happy on that score, blissfully so!  But now we have the whole nightstand issue.  I realize that if you're in bed 24/7 and get out very rarely from that sumptuous bed, then there's often a problem with the nightstand.  Mine was beautiful but completely impractical, so I'm borrowing the guest bedroom's nightstand, which IS perfect, until I can get one that goes better with the furniture in my bedroom.  But  after huge consideration and thought, here's what I think makes the "perfect nightstand":
  • Drawers not too wide as then it's difficult to pull any out one of them from any angle when you're still lying in bed.  I like a nightstand about 24" wide.
  • Drawers need to be tall enough to able to hold a box or boxes of your prescription bottles and other tall necessities.     
  • Drawers should not be too deep or you often lose half the paraphernalia you need to slippage alone, to the back of the drawer each time you open it.  (Can we spell "frustrating"?)
  • I like a nightstand that can hold two lamps.  One lamp is for a higher wattage for seeing things in the room.  The second lamp is only 40 watts and I turn it on as a signal to my brain that we are now preparing for bedtime.  Of course, the signal doesn't usually work, but it gives me a fighting chance at least.  Without it, I'm doomed. 
  • I also like having more than just a small clock on my nightstand, but a radio/CD player/thermometer so that when I start sweating (many times daily) I know if it's me that is hot or cold or if it's the room.
  •  Finally, I also like to have a pretty, opened box on the stand where I can put my lip balm, floss, notebook and pen, as well as other little necessities.  When I figure out how to deal with the cell phone, numerous pairs of eyeglasses, drinking glasses and the TV remote with any amount of success, I'll let you know - in other words, when pigs fly....there IS no solution that really works! 

And so it goes.  I hope that everyone's doing their absolute best, only better.  I hope everyone has a wonderful weekend.  And finally, I wish everyone a Happy New Year, with all the best of everything.  In case we don't get a chance to "speak" before 2013 comes around, I wish every single one of you out there ever so much great health, success in all you do and, most importantly, much love in your lives.  Ciao and paka!

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

No comments:

Post a Comment