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.

Friday, September 21, 2012

Friday Tidbits: Fibro-Brain

And it's Friday yet again!   How, I wonder, can the time move so quickly and yet so slowly, both at the same time.  It's been a heck of a week!

Since this is a bit of a potpourri, here are some of my (very) random thoughts and experiences.

  • The hypothyroidism is about to send me over the edge.  Honestly, I thought I was finally getting a bit of control over my life, despite the fact that I knew that there is and has been something majorly wrong going on with me.  Good grief, I'm in bed almost 24/7 and had more or less resigned myself to this stage at this time, despite the increased pain and all the other symptoms that are driving me batty.  But the awful thought: I know that the thyroid problem (and the symptoms associated with it) are just the tip of the (new) iceberg.  But, as usual, in "Irene-land," I messed things up, just to make life a little more interesting.
I was to have blood testing done again last Monday to see what my thyroid level was, along with a few other goodies. Even at my best, I have trouble remembering to take my thyroid med.  I'd finally decided to take the new med in the AM, afraid it may interfere with the bane of my existence, sleep, or the lack thereof.

Well, I'm the first to admit that I am really awful about taking meds.  Fibro-brain at it's best.  Sunday afternoon I remembered I'd not taken it and since I was in the middle of something - probably looking woefully at the pores on my face? - I asked hubby to get me the med.  I was actually shaking so much that hubby insisted that he put it in my mouth - I'd been dropping meds right and left all week.  Trusting soul that I am not, I felt with my tongue that there was only one pill and chastised hubby for his mistake.   A suddenly rather pale-looking hubby asked, "what do you mean?" - clearly realizing what had happened.

When I'd started the thyroid med, we soon doubled the dosage.  For some reason (what? I have NO idea) I continued to take two pills after the prescription was refilled with the new dosage ... so I'd been taking double the amount of medication I should have.   Fibro-brain at its finest!!! :)  Oy vay!

  • I'm getting a bit annoyed with the whole ME vs. CFS fight and which is worse and who has it worse and all the nonsense involved.  It is EVERYWHERE!!!!

It's not rocket science, people. If it looks like a duck and acts like a duck, it's a d*mn duck!   The term "Chronic Fatigue Syndrome" (CFS) is insulting.  I absolutely DESPISE it.  Why not just go back to calling it "The Yuppie Flu" and get it all over with!!!!   "Myalgic Encephalomyelitis" (ME) is better but not accurate either, plus it's hard to spell, a definite consideration with those who have this illness!   I, personally, prefer "Chronic Fatigue Immune Dysfunction Syndrome" (CFIDS) and it's the term I use in life, but that's not accurate either.   As long as you don't call it CFS, however, I don't really give a darn which name is used, CFIDS or ME.   But give me a break: stop the fighting and arguing!  It is all the same animal, just different politicians!   Full stop!  Period!

  • On a lighter note - and don't even bother trying to figure out how I got here - after all, everyone in my family says they would never want to live in MY brain, even for a second.   But if you get a bad haircut, turn it around: it's Murphy's Law.  If you get an awful haircut and color, highlights, etc., it means that something wonderful will happen.  I got my worst haircut ever, as did hubby, for our son's wedding in Malaysia.   Just saying.... think about it - or not.

Finally, I hope all have a great weekend, and I hope everyone is doing their best, only better.  Ciao and paka!


  1. You know the human condition quite well. I like the variety in the "Friday Tidbits" section.

  2. I haven't been able to read your blog for quite a while - my Fibro and migraines have been in a nonstop flare-up. I wanted to ask if you use one of those weekly medicine holder things. I started using mine several years ago. I'd forget whether or not I took a med and would either not take it at all and go through a horrendous withdrawal or I'd take a double dose and feel even worse.

    Fibro fog just plain sucks - my spelling is awful (lots of spell checking is necessary), my vocabulary consists of a lot of 'you know', 'the thing', 'what's the thing that...' It's as though certain words never existed, like they're WAY beyond the tip of my tongue. My family and friends are used to me trying to describe what I want to say and are fairly good at translating.

    I came to terms with the loss of my verbal and written abilities but, there are still times that it's extremely disheartening. I hate Fibromyalgia because it not only affects my body but, it also affects my mind. Thank God it didn't develop until after I received my Master's Degree or I wouldn't have been able to earn it. As much as the pain and my craptacular immune system are debilitating, the apparent loss of my intelligence is much worse.

    1. Everything you wrote: agreed and understand. From the pill containers to the migraines that just won't stop to the spelling, grammar, etc. (You would be shocked if you knew how long it takes me to write a post! And there is no end to all the mistakes I find and keep correcting: it's like who IS this person, me?)

      Every move is an effort. OH! I must try to do a post of all the people that I get wrong and call by the wrong names...now even I think that's hysterical.

      I know what you mean about your Masters. Without a lot of help from so many really great friends I could never have handled taking my orals...I was still so ill from that infamous flu. Yep. The loss of intelligence is a killer.

      But please, just hang in there. Read if you can...even if it is crud. You need to exercise the brain if you can. One day great reads, the next week the worst things on God's Green Earth which you'd be too embarrassed to ever let anyone see. But keep that brain muscle as active as possible without overburdening it is my personal advice. You gotta use it or lose it! (BTW: I used to live in NYC and in NJ too!) xx

  3. I love the way you write Irene so true about the name on boys notes that's all that is ever written CFS/ME. The thinking is if boys are pushed to do things it will get rid of their fatigue what a load of bs if that was all it took everyone would be better. Such a misunderstood dd and like you said people can get quite offensive about the name I find it quite intimidating at times when you see it on Twitter I even changed my BIO for that reason. I prefer ME but as I said all notes have CFS/ME on them who am I to argue can't win damned if you do damned if you don't.

    Lewis is suffering today after passing his on-line exam bless him no one realises unless they have ME or have loved ones who do just how debilitating ME is dd. People are so patronizing make me so angry, where we live have a steep hill car parking is terrible so put in for bay for the boys outside the house (has to be put in for medical proof has to be given to get one not give out willy nilly). They have a hobby with dad and at weekends after conserving energy they go out and fly their remote control aeroplanes if well enough and the weather is fine. They sit in their chairs and just fly they love it so much something they can do that takes little energy. Anyway last weekend I said to my neighbour ow you managed to park outside your house for a change, yes she replied and then said of course you need to park right outside yours so you can transport the planes and laughed. How hurtful, if it wasn't needed it wouldn't be their people are so cruel and really get on my nerves.

    Love and hugs Sophie xxx

    1. Hi Sophie! I think that no one really understands how painful those sorts of remarks are. I know we need to develop a tough skin, but that is easier said than done. An added problem is that some people speak without thinking while others know exactly what they say. They see the outside and never suspect the inside and find that they just have to be mean.

      The boys are so lucky to have a family such as yours to help them. I know it's tough for them but I always have to smile when I see how fiercely you defend them, protect them, nurture them and so forth. And what a lovely picture you paint of their flying those planes! xx