About Me

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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.

Thursday, July 11, 2013

Orthostatic Intolerance and POTS


The other day my orthostatic intolerance and POTS reared its ugly head again - not so unusual - but at a most inconvenient time.  I had a dental appointment for a good cleaning and then another meet with the dentist, to go over the plan of what we'll do over the rest of the time we have left.  As I've written before, my dentist and I have agreed that no work should be done once flu season starts because I always end up getting sick from a visit - and when I get sick, I really do it right!  One year, after a tooth extraction (with an oral surgeon) I caught a bug that lasted two years.  At the end of this awful period I was left with blotchy legs, all purplish and red.  Anyway, there are just too many germs involved with waiting rooms, etc.

I've been going to the same dentist for the past 25 years and he's seen how sick I can get.  I hate that I end up canceling appointments right and left so we've decided that any work I need has to be done between April and September - minus an emergency of course. *Meekly looks up from under her bed covers*  Ugh...I started a bit late this year!  

And I do so love my dentist.  He never lectures me about anything and just says "Do the best you can and don't worry about it," or some such, with a comforting hand on a shoulder.  Whenever I get this "treatment" of kindness and encouragement, I want to cry because kindness always brings me to tears - much more so than any sort of meanness and callousness does. Oh boy. Am I off track or what?

Getting back to the POTS and orthostatic intolerance, two weeks ago I wrote about my abbreviated makeup job in going to the dentist.  I thought that was a hard getting-ready-to-go day.  And mind you...this is a really important thing for later in this post.  Getting out the door is the hardest part of my going anywhere.  Once I've taken a bath and washed my hair, dried my hair, put my clothes on .... Whoops!  A mistake: need to backtrack and undress because I forgot to put on deodorant.  Need for it to dry, to wait and then put on a second deodorant because I perspire just that easily.  Yes, so put clothes back on, see what shoes or boots will fit me that day. I'm entirely too exhausted to do much more to my face than apply some sort of serum, finding it too hard to even think of putting on an SPF, a BB cream or my CC cream.  

And so, as I got out of the tub my body thought it would remind me that it wants/needs to stay in bed and not go anywhere whatsoever, for whatever reason.  Hubs and I thought differently, fools that we are.

I started collapsing, I couldn't sit up in order to breathe, I couldn't breathe because I had no energy to do so. I've only had one major panic attack (that I remember) and it was a doozy, causing me to end up with bronchitis which turned into a pneumonia that was so near-fatal that I got a pneumonia vaccine - a big step in "those" days. This was worse than that panic attack and frankly it scared me. Yes, I'd noticed in fleeting that I was getting awfully light-headed too often in the three or four days before this happened but I didn't need to be anywhere so it wasn't too much of a concern.  There were enough squeaky wheels (symptoms, disorders) to address and the blacking out bit was just a minor inconvenience.  

Hubs, who was getting very upset with what was going on, was trying to be as encouraging as he could be but now I was in the cruddiest of moods.  First I felt "he's in my way, under my feet every time I turn around," yet moments later I was exasperated, thinking, "where the heck is that man?"

"That man" was pumping really cold water into me, gave me OJ, all hoping it would work.  I was collapsed on a chair, bent down and slinking off, which reminded me of my daughter's graduation from university.  I kept sliding off my chair as the new graduates were making their way to the stage, being plucked right back up again by hubs, my mom completely and totally oblivious to everything going on around her but that her beloved granddaughter was about to receive her diploma.  That her daughter was having a side show of her own, slipping and sliding away, she didn't see!  (I hate to think how many people must have thought I'd had too much to drink!)  And once I starting passing out on top of the slip and sliding away, there were medical people around to help carry me out.  But that's another story, as in "Why I didn't see my daughter graduate even though I was there?"

Back to the dentist day.  As I was (so melodramatically) finding it hard to breathe, move, think and other (superficial) activities, I thought to ask hubs to take my BP.

Like many of you out there with CFIDS/CFS/ME and/or fibromyalgia know, our BP can be very low for all too many reasons.  I usually concentrate on the top number without giving much thought to the bottom one but I was now concentrating on the bottom.   It was 80/50 sitting down.  When I said that I wanted to have my BP taken standing up, he tried to put his foot down and said it was just too dangerous at that moment to do anything but sit there for a while and let the liquids do their job and to get a bit to eat to stabilize my BP.  He was right. (Moan! Groan!) 

It was a tricky little period.  The getting-ready-to-get-out-the door is always the hardest part for me.  Once outside, my adrenaline can kick in and I can go into emergency mode, but there is always a huge price to be paid in the end.  And it doesn't seem to matter if I've been out for 8 hours or 2 hours.  Weird!

When the dentist said that the next phase of fixing my teeth would take a bit of work he was concerned. Finally, he magnanimously proposed that we split that job into two days, two appointments for 90 minutes each.  Goofy me said, "fine!"  I always think it's fine UNTIL I have to do it and I realize that I am indeed a sick person.  Why is it that I have such a hard time getting around that little "fact"?

Hubs spoke up and explained that after my one and a half hour appointment, I'll be so ill that I won't be able to come back another day anytime soon.  After much discussion, we decided that it would be a better tactic to go just the once for three hours vs. the two appointments for 90 minutes each.

What would have been your decision?  And do you find that getting out the door is the hardest part of anything you do?

Anyway, I hope everyone's doing their very best, only better!  Ciao and paka.

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1 comment:

  1. Oh that made me giggle! You have just described exactly what I experience.
    Having a good laugh sometimes is the best tonic as we seem to have so many health problems.
    keep up the good work..