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, November 16, 2012

Friday Tidbits: Blubbering Idiot

Oh heaven help us all, it's Friday and that means "Friday Tidbits," no matter how I feel.  I have a real bugaboo about making promises and not keeping them.  At any rate, I finally had the energy to look at my Facebook page yesterday to let y'all know that I'm still around but that it's been a rough patch I've been going through. And the holidays aren't even here yet!  (Irene bangs her head against the desk surface.)  How DOES the CFIDS/ME/CFS and fibro patient survive the season?  I'm not entirely sure.

But I do have a confession to make about myself: I don't allow myself to cry, though that changed this past week.  I just don't allow myself that luxury.  I do cry every once in a while, especially when I'm really angry about something (which just makes me angrier and then I cry harder, of course) but for the most part I try not to allow myself tears when it comes to being ill.  My feeling is that if I start, how will I stop the flood?  Besides, it feels so manipulative.

I'm pretty strict about the policy too.  In fact, I remember that when the kids were around the 10-years-old mark I'd taken them off to a movie for survival purposes one August day before school started.  Now August truly has the most horrid movies.  I think it's because Hollywood realizes that it's the only time that they can hoist off their stinkers upon poor parents who are desperate for a couple of hours of keeping the kids occupied.  Hollywood's not stupid: it realizes that parents have done every activity known to man by August and everyone is bored silly - consequently, any movie at all will do at that point. Anyway, the movie that afternoon - and who even cares to remember WHAT the movie was - had a scene in it that was funny and sad at the same time and suddenly I looked over and saw three sets of eyes staring at me with mouths open.  I asked what in the world was wrong and they all just kept gasped and one finally said, "Mom!  You're crying! You NEVER cry."  I thought they were nuts but thinking about it for the next week or so (obsessing?) I realized that the little stinkers were absolutely right.  I did try to protect them from the worst parts of my illness and really they only saw the bad stuff when mom was in the hospital and they weren't too sure what went on in there.

But in trying to protect the kids from as much of my illness as I could, I had given off this air of things don't hurt me.  Funny how things can be taken.

The purpose of the story?  I guess I just want someone to know that I've worked really hard on protecting my kids as much as I could, though I often think that THAT has blown up in my face and that they don't REALLY get it.  

And I also wanted anyone out there to know that when I say that I cried more this week than I've probably cried in my entire life, I'm not saying this lightly. The pain has been excruciating but I think I could take it were it not for the fact that I'm just so darned tired of everything going wrong with me every time I turn around.  And you know it's bad when there are two reasons that you don't want to go to the ER: 1) because you haven't bathed in so long and REALLY stink because you've sweat so much and 2) because telling the ER staff what is wrong with you is just beyond what you're capable of doing.  Really?  Are those reasons at all legitimate?

And you know: I should learn to keep my mouth shut sometimes. I had praised our ER in an earlier post.  Well, this time it was a nightmare.  The staff was loud, rude and obnoxious. The lighting was horrid and obviously when the "state of the art" rooms were designed, no one took into consideration anyone coming in with a migraine also in tow.  Actually, my migraine was barely a migraine until I got to the hospital and all the noise - with an empty ER!  I was puzzled for a couple of days as to why my treatment was so night and day compared to the last time I was there and couldn't figure it out. 

And then BINGO!  I got it.  How could I have been so blind?   This time I had come in with an invisible and chronic illness that couldn't be measured.  I was no longer in there with a problem which could be fixed by an operation nor could it be measured by any testing. Ergo, the system which deals so well with acute problems, but extremely poorly with chronic ones, was in full blast mode and then some.  Ah!  Now I realize why one of the nurses that I had during the surgery stay had disliked the ER so much!  

Oh, they were generous with the pain meds - I must give them credit where credit is due.  In fact, they gave me so much that I got to sleep for five hours in which I have NO idea what they did, what all was ruled out, mostly because I didn't make notes when hubs told me and I should have, but really, I just don't care this week.  Furthermore, I do think that if I ask hubby one more question about the ER visit he may choose to risk prison and just shoot me.

But the difference was night and day.  I had back pain, chest pain and breast pain, was nauseated - and fed up with that since I'm the first to admit that I don't do nausea and when it hits I simply can't cope with it.  I always say, give me anything but nausea and a sore throat.  (Do I sound like Forest Gump?)  Actually, I've been dealing with the nausea pretty well, since I've had it almost non-stop for about a year but it's been really hard to control with medication for the last six months and besides, wasn't it supposed to go away when my gall bladder was removed?  And of course, it hurt to talk since the incisions in my abdomen from the gall bladder surgery have gone into full pain mode now.  I guess the part where my immune system has something to fight has given up and decided to turn around and retreat.  So after crying all day, while the painters were in the house trying to be very quiet but it is just so annoying to have anyone around day in and day out and hearing every bit of the sanding that goes on (plus, cough, cough cough!), the pain getting worse each day, by Tuesday I was a blubbering idiot behind closed doors.

And really, is there anything worse than a blubbering idiot who doesn't even know what IS wrong because she has no short-term memory at all?  I had to have sounded loony because it was this and that and this and the other.  Thank heaven hubby was able to give some sort of history - after we debated whether or not we should go to the ER for over 8 hours.  The neuropathy in my foot was giving me a hard time, then my knees would go into a pain where they felt like they'd been glued on backwards then another area would take over.  The anti-inflammatories aren't doing their job and my hand which had the surgery is puffed up all the time and hurts like you-know-what because just think of all the nerve endings in the hand.  It was the entire Civil War going on inside me with several major battles going on simultaneously and with one part of the body going into the off-the-chart pain to another part taking that honored place to another.

After arriving home from the ER we were able to schedule a mammogram (yep - 7 years since the last one) and I found myself almost hoping for cancer.  Why?  Well, anyone with CFIDS, etc will understand: I wanted to be taken seriously.  I didn't want that loud talking from the hospital staff as if I were mentally incapacitated, deaf and/or didn't understand English.  And yes, when I asked if they could please use their "indoor voices," there were quite offended and talked louder - the ER staff, that is.  

After the imaging, the radiologist came in and explained that they found some calcium deposits but nothing else.  Well, I wanted answers.  Where had the pain come from?  I had certainly not imagined it and I wasn't in a mood to be bullied any more.  To give the radiologist credit, he did try to talk to me about that one and he tried to give me reasons for breast pain.  When he mentioned that back pain could be the cause of breast pain, hubs and I were so excited that we both yelled out "Bingo!' at the same time.  The back pain had been so bad that I had even considered allowing my rheumy to give me some trigger point injections - but chickened out.  Nothing else was helping out with any of my meds, so I thought, why even bother going through that "ordeal"?  I have enough shots every day and besides, I was hurting from a phenergan shot that one of the nurses gave me in a very odd place on what I thought was supposed to be my bottom, but kind of missed her target.  No, it was time to go home and continue the tears.

They seemed safer than any hospital or doctor that day and all of this past week.

Hope the rest of you all are doing your best, only better.  It helped to talk.  Thanks for indulging me.  Ciao and paka! 

No comments:

Post a Comment