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.

Wednesday, April 3, 2013

Catching Up....

Soon, I hope!!!

I've been on a bad streak in the last two weeks, to put it mildly. Nausea, migraines, my fibro beyond the pale, the CFIS/ME/CFS kicking in all at the same time.  I had thought this last bad streak had finally culminated. Ah! But that wasn't the case at all.  By 4:00AM Thursday hubs found my head not on the keyboard - oh no, that would have been too simple.  Instead he found me on the floor, having fallen sideways off a rather substantial upholstered chair.  

Yes.  Falls: my life, it seems.  I was left with a hint of a black eye, abraded hand, swollen lip, swollen inside the mouth with a front tooth that hurt whenever my tongue would touch it or I attempted to eat, plus a few other goodies I've forgotten, thanks to short-term memory problems.  So, basically not to disturb my tooth, I'd given up on food for a few days.

But did my adventures stop there?  OF course not!   Yesterday, hubs found me on the sofa by my bed. Evidently, I wanted to write a post (can you imagine the gobbledygook??) and to make it "easier" to get to the computer, I thought I'd get out of bed via the foot board.  (Yes, because getting out of bed via a wooden foot board would be SOOO much easier and faster than getting out of the bed the conventional way!)  I hated to call hubs at work.  However, I didn't know WHAT was going on with me.  (And how I got to my cell phone is beyond me!)

I must say that I'd really done a great job of it.  That left leg of mine is completely unreliable thanks to my compartment syndrome surgery: I must have hit a nerve in my hip which was untreatable.  Unfortunately, having used that left leg for so many decades, I'd learned to rely on it, quite a bit in fact.  Ditto my left hand, which was damaged and underwent emergency compartment syndrome surgery.  Therefore, it's rather easy to misuse that foot and hand, and thus get myself into a FINE pickle.  At any rate, I fell hard, having hit my eye (again) and increasing the slowly developing "almost" black eye, with beautiful abrasions on that eye.  Cheek, yep.  Forehead, yep.  Left hand abraded and it looked like nice black and blue marks might appear, yep, with some abrasion on the right hand as well.

What's a girl to do?  I have no idea.  These past two weeks it seems as if I have been living on migraine meds and painkillers with very little relief, if at all.  The migraines are so bad that the ONLY reason I won't go to the ER is because I fear the treatment I'll receive because migraines are "invisible."  You get there and the TV blares, staff becomes rude because they assume you're a drug-seeker.  Going through a repeat of my history is daunting.  Lighting there is a nightmare and too many of the staff were never taught to speak with their "inside" voice, not shout as if I'm deaf - or perhaps don't understand English  - not quite getting it that loud talking won't cure anything at all.  Worse, upon having hubs politely explaining that I have a migraine and could the person please speak more softly, only gets taken as an insult and the voice inevitably gets louder.

The nausea is almost non-stop.  And I've also developed a couple of crazy symptoms: upon eating I get pain. Not, a stomach ache, but huge pain all over.  Doctors have told me that this has been described in medical literature, but no one knows what causes it.  You'd think this would stop me from chowing down everything in sight, but nope, I still consider that food is going to makes things better. Plus my appetite is completely out of control! I tried to stop eating for a few days but no joy!

So, those of you who are followers of my blog, followers on Facebook, and my twitter family, you can see why I've been mostly out of commission.  I think the video below expresses my sentiments MUCH better than I can. Besides they're cuter!

As always, I hope everyone is feeling their best, only better.  Ciao and paka!

For those who can't get this on their mobile devices, the short song is here.  I'm not quite sure how it works with YouTube: hope giving credit to the person posting it is kosher!delboy85017  The song you want is "Gloom, Despair, and Agony on me...:


  1. Dear Irene you totally amaze me :0) xxx

    1. I'm not sure why, but thank you nonetheless, Sophie! xx

  2. I can't believe how much you've been through recently. It's good to see you still have a sense of humor. I, for one, know how easily that goes away when you're body is determined to kill you slowly. As my friends have lovingly said to me (my doctors too)...you, friend, are a disaster. I obviously hope you get MUCH better soon; by 'soon', I mean in human terms, not in terms of astronomical time scales.

    I went for Botox 2 weeks ago. The neurologist gave me a significant dose, especially in my forehead and the back and sides of my head. Then I saw the rheumatologist this week for Lidocaine injections to relax the upper trapezius muscles which overtightened due to the Botox. Here's my determination: if not for adrenaline that's raging through my body thanks to stress, I would be bed-bound from the nerve damage pain flare-up and the migraine (the migraine has literally been non-stop - as in, no real migraine-free days until the last few days). My dog has to go to the vet today to see if he's diabetic - why not? He and I have been up the majority of 2 nights while he goes out to pee and then drinks A LOT of water. I upped his protein via plain meatballs and removed any carbs (whole wheat toast is a snack for my dogs). The vet is fairly certain it's diabetes. If it is, my dog will start on insulin immediately.

    For you and others who have chronic illnesses AND have children - I don't know how you function. As someone living with constant pain, I understand you go minute-by-minute and sometimes second-by-second but, still. Summoning the mental and physical energy to be a parent when you're ill has to involve super-human strength. I bow my imaginery hat to you. Being a mom to 2 furry kids is stressful enough to last me several lifetimes.

    Sorry, I haven't been around. At some point, I hope to buy a tablet so I can go online from bed. As of now, I quickly go online to pay bills, check my email and very quickly peruse sites.

    Okay, I'm done. My dog is up again. Off for pee trip #57 (or so it feels) and then I need to make the 2 dogs breakfast. Feel well!!

    1. Hi Melissa! I'm so happy to see you're still around! I was trying to figure out how to private message you on FB but no luck!

      Sorry, I had to laugh when reading parts of your latest, but only in the way of, "I can't believe this!" My son's cat has diabetes! (I have 3 kids. One son in Malaysia, the other son across the street, daughter down the street.) And the lidocaine injections, migraines...we're living each other's lives, only differed by time here and there a bit.

      I am really sending positive thoughts your ways for the migraines to get better...I REALLY am!

      And thank you so much for the understanding of how hard it was to be a mom of three kids: you are always so supportive and that is appreciated beyond anything I can say. I feel guilty about having, eventually, been a phantom mom but as one kid said, "But we always knew where to find you: you were always in bed and a captive audience. Most kids didn't have that." That's why I miss the one in Malaysia!

      PLEASE keep in touch as you can as I do wonder and worry! Thanks for writing in. Fingers crossed. xx