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.

Tuesday, June 12, 2012

I DO treasure that which remains behind....

...That though the radiance which was once so bright 
Be now for ever taken from my sight, 
  Though nothing can bring back the hour 
Of splendour in the grass, of glory in the flower;  
  We will grieve not, rather find 
  Strength in what remains behind....
     ~William Wordsworth  (from "Ode to Intimations of Immortality")

It may seem absolutely ridiculous to some out there that a person who is supposedly so sick that she's bed ridden and, for huge stretches of times, is in bed 24/7, who can no longer cook for herself, who can't eat sitting up, who has a hard time talking/dealing with more than one person in the room at a time thanks to sensory overload, should be so interested in such trivial subjects as eyebrows. When I wrote part 1 of the miniseries, an hour after I hit the "publish" button, I was so embarrassed, thinking, "Good grief [actually my real words have been cleaned up], if someone stumbled onto this site right now, they'd wonder how and why someone so supposedly ill would go on and on about such trivia?"  If she's THAT sick, the thinking would probably go, shouldn't she somehow be out there participating in the name change of this awful illness?  Shouldn't she be using her time, and the energy she does have, more profitably on patient advocacy...or any number of other lofty issues/problems?

My answer is that I'm tired of living in that world of only going into the noblest of discussions and activity.  I've now lived with an illness that has so devastated me and robbed me of the "core Irene" that I am an Irene my husband never really knew, and my children don't remember, the more energetic, albeit already sick, mom.  It breaks my heart when I find out that my oldest often tells the stories to the youngest (and they are only three years apart in age) of what mom was like when she wasn't AS sick as I've been for the past twenty five years of the thirty seven years I've had this DD.

Just for a while, I'd like to live in a world not dominated, every single moment, by CFIDS/ME/fibro and its many parasitic hangers-on, as in severe insomnia, pain, light/sound/smell sensitivity, falls, swollen lymph nodes, migraines, tinnitus, BP craziness, neuropathy, IBS, the daily shots...the list goes on and on.

Furthermore, I think that for most of us, we generally DO feel better around beauty.

The other day, I happened to test out a new nail polish.  Given my limitations with "the Claw," I decided I'd paint only my left hand's fingernails.  After all, I just wanted to get an idea of how the color looked on me, the way it goes on, would there be a streaking problem.... I told myself (yes, I often talk to myself and hubby is always saying, "What? What?" not, altogether sounding much different than Ozzie Osborne - oh sweetie, you know I love you!) that I needn't give myself a  perfect manicure. I knew that trying the perfect manicure at that time would only lead to frustration because my left hand is still a huge problem, now, six months post-surgery. I told myself to just slap it on and then take it off after a day or so, and that later, when finally in the mood (come on!  It COULD happen!) I would then go the "perfect" manicure route.

And so last night as I was actually reading a book (yes!  Hallelujah!) and holding my Kindle with my right hand but clicking those pages forward with the left while lying on my customary right side, I suddenly noticed how pretty the nail color was, how perfect it looked on my hand and that this color has the potential of being a "really good" buy.  It put me in a great mood for a few moments, much better than a host of psychiatrists, psychologists, or life guidance coaches could ever hope to achieve, including my GP, my hubby and even my kids.  It's because I saw something pretty, with the same reaction that I feel WHENEVER I see something pretty...be it a daffodil, a vacuumed, dusted and sheet-changed bed and bedroom (MINE, of course!) or a pair of cool boots (though we won't go THERE for a while!)

I know it's superficial to to be hung up on one's looks too much.  And despite all appearances, I really am not crazily so.  Yes, I may be a bit of a beauty product junkie, but we all need to have a side of us that's not always focusing on the bad, nor problem-solving the world, nor the awfulness of this illness and what phase we're in with this DD.  A long time ago, decades actually, I wrote that it's not right to compare the CFIDS/ME/fibro suffering to any other suffering because ALL SUFFERING is suffering and it all hurts.  What we need to do is find a way to live with it, to minimize it.

I've found that in my life, I'm always looking for ways of improving my condition.  If I can, for example, eliminate carbs from my diet and see a .05% improvement, then another .15% improvement from massage therapy, then you know what? - I'm going for it!  It's all a matter of good old arithmetic and common sense.  If you add all the tiny bits of help - this, that and the other - soon you have an improvement of 5%.  And that 5% can make you or break you sometimes. Add more little improvements, and soon you're doing 7% better, add another "successful" med... I think you can see where I'm going.

I suppose this is where I get the most frustrated and upset and even angry: when I'm told by ANYONE, be it dietitians, doctors, "friends," family member outside of the immediate family circle, that I should try this and that.  I meaning I've had this illness for thirty seven (expletive!) years.  How stupid do they think I am when I'm told I should do this and that, by some very rigid people who have, when all is said and done, absolutely no idea what is happening to me internally.  They may see some symptoms, but not all.  My close ones, the immediate family, however, know when I've gotten too sick, be it from the blue to colorless lips, the slur that appears in my speech, the balance problems, the difficulty I have finding a word, the sweat covering my face and scalp and then the rest of me, the dry mouth which makes my teeth and tongue stick to my mouth so it's almost impossible to talk, the croaking sound that comes out when I'm so exhausted or under such pressure that my throat constricts.

Case in point and wow, this is a huge bugaboo of mine: exercise and pacing do NOT work, for ME!!!!  (Boy!  That felt good to say!)  Normally I do not advocate violence but sometimes I just want to smack someone "upside the head" when I hear the THEORY of exercise and pacing.  Been there, done that, long before many of those propagating this advice were even born!  What's more, I've come up with coping mechanisms which I thought were what anyone would give a try, only to find out that no, they're quite unique.  My daughter calls it being an actress and says I should get an Oscar.  I don't mean to employ dozens of tricks that make me appear "normal" to most...it just happens.  It's been evolving for decades and I can't even begin to explain them to you, just as I could never begin to explain how it is that I breath, I eat...it just IS, it just happens.

And understand, that I'm in no way saying anything negative which anyone here reading this blog has offered in the way of help.  I've started on my evening primrose oil, made as a suggestion by my old HS friend reading my blog and I think I see an improvement, though I can't yet be sure because I only got to it a week or so after the suggestion was made and then I forget half the time.  I've called my doctors and questioned the histamine angle only to be told that yes, that's been ruled out and often.  These observations and comments are made by those who don't just blithely say, "honey, if you'd just get your Be-Hind out of bed, you'd be healed!"  I feel no judgement on their part, as I've felt no judgement on any one's part who has offered suggestions here.

Besides, presumably, anyone giving me a suggestion here on this blog has actually read enough of some of my most deepest thoughts regarding CFIDS/ME/fibro and has read enough of my history to at least make a suggestion that makes sense.  It's the out-of-nowhere suggestions that are depressing and frustrating.  It's the rigid suggestions, like the ones that claim anyone and everyone who has CFIDS/ME/fibro will be helped by exercise, because it just isn't so with me...and I know it's not so for a lot of people out there.  I get so angry sometimes by that old chestnut of "You must do this," "you can't do that."  So many of us already experience so much guilt and on so many levels: do we really need more?  And God save us from those who think that if we tried things with more effort, we'd be magically cured.  I don't even want to go there!!!

I mourn the loss of the old Irene.  I hate all the things that have been taken away from me, a bit at a time, like baking bread a few times a week, gardening every day, visiting with friends and so on.  But I still have a lot of good things happening to me and I try to keep those things in mind.

And yes, I want to be more than this illness.  I hate that illness defines me in so many ways.  Sometimes, I admit, I do things I probably should never attempt, but really, how much can one be caged, even in a gilded one?

And so, knowing that beauty helps me cope - beauty of all sorts: the beauty of a wonderfully phrased paragraph in a book I happen to be reading, the beauty of flowers in bloom, the beauty of the hills around the town I live in, the beauty of a clean and organized, dirt/dust-free room, the beauty of the engineering of a particular product...well, I'm going to go on with trying to appreciate those things as long as I can, because for me, it adds to the quality of my life.  This seeing of beauty in what remains behind makes me usually realize that life is good and pursuing the good things in life is often what keeps life worth living.


  1. I loved this post Irene. I agree with you completely about so much that you said. I think it's so important to appreciate those small things that put a smile on your face, not matter how trivial they seem to others. I went for a haircut yesterday, and I was smiling all afternoon because of it, despite the crash I was experiencing.


    1. Thanks Ruth! And I'm so happy that you enjoyed getting your haircut the other day. You'll have to post a few pictures one of these days. Hope you're doing well today!
      Irene xx

  2. I too loved this post. I can identify in an indirect way with what you are saying about other people's "suggestions." As I have said before, Pete has had diabetes for 40 plus years and probably knows more about it than most doctors - and yet sometimes people will tell him what he "should" be doing!! His reaction is similar to yours - don't tell me what to do, I've already tried it and it didn't work!!!

    1. Thanks Martha, and it IS frustrating! Thanks for leaving a comment about it ... it's great to have a bit of validation.

  3. Great post. It's true our illness does take up or take away so much of us that people forget we're people too. We need things to get us through this. Illness doesn't take away your interests it just takes away our ability to do them as much as we would like. Your tips and suggestions are fab and probably what more people want to hear. We certainly won't get that from our doctors.

    You'll have to forgive my comment trail as I work my way through your blog. I love it.

    Sian x

    1. Sian, I LOVE your "comment trail," as you put it. Thank you for reading oh so many posts! And it feels great to know the tips I give - or the experiences I mention - are of some help to others. xx