Thinned Skinned, Moon Faced, Bloated and Down in the Dumps

Uncategorized
Nude Woman with Necklace 1968 by Pablo Picasso 1881-1973
Nude Woman with Necklace 1968 Pablo Picasso 1881-1973 Purchased 1983 http://www.tate.org.uk/art/work/T03670

Let me be the first to say (so that you don’t feel obliged to) I have the tendency to feel and sometimes express, the very human emotion, of vanity.  

I don’t think this necessarily makes me a bad or totally shallow person… maybe just a bit of a cliché.  It’s not vanity in the sense that I believe it’s overly unhealthy or self-destructive… but more of an honest, evaluative, examination of my physical self.  One that is usually humorous and a perhaps a little self-deprecating.

Okay… so maybe, a little bit unhealthy. 

I think it may stem from the era I grew up in, as I was right on the cusp of the “Fab 50’s,” and the “Turbulent 60s.”

Women’s perceptions of themselves were changing at warp speed and as a young girl of 12-13,  it was hard for me to keep up with what my perceptions, about myself, were “supposed” to be.

My early 1960’s role models (mostly the “wanna-be-girlfriends” of my two older brothers) were all about “looks.”  Pointy boobs, tight sweaters, lots of make-up, tiny waists, no opinion and BIG HAIR!  They chased after both of my handsome brothers, continuously.  And I had an endless supply of 15-16 year old girls, who wanted to be my “big sister.”  Oh yeah, sure, their motives were about as pure as “yellow snow,” but I got taken downtown and out for ice-cream, in exchange for some innocent information about who might be calling/coming to my house.

As I got older (15-16) and grew bored with my high school classmates, because we didn’t seem to have a lot in common. {I was interested in the politics, the Vietnam War and social injustices, oh, yes, and smoking pot; many of them were more interested in shopping, dating the most popular jock and what to wear to the football game, Friday night}.

I sought out, older, more well-rounded and cerebral, women of substance.  I found them them and they were fabulous!  They were awe-inspiring, intelligent, insightful and innovative…  but if I’m totally honest, they were also almost as insecure as the rest us.

It makes total sense, really!

They were the “trailblazers,” single handily trying to change America’s chauvinistic, stereotypical, perceptions about women while (they themselves, still quite young) were  grappling with their own self-confidence, sexuality, body image issues, desirability and their ultimate value to society. (Regardless of the radical social changes taking place in our country, they were still expected to get married and have children…  soon!

It was all new. Cutting edge. There was no rulebook. We all played it by ear.

I exited that wonderful, crazy, exciting, chaotic time…  and came out the other side with an incredible sense of self; a strong, capable mind, an independent, fearless spirit and overall a pretty self-sufficient, self-confident woman!

I, like many of my “sisters” however…  still looked in the mirror with a critical eye.  One that I would never wholly abandon.

If you’re not there yet, you will find that growing older (especially if you’re a women) will present you with a whole host of distinctive and contradictory conundrums!  It’s a freakin battlefield, filled with the undetonated warheads of our sisters, who came  before us.

I won’t go into the detail here, as I have written about it previously…  (Well, of course I’ve written about it!!!!) the inevitable, invisibility that we as women face in our “golden” years.  If you’re so inclined, you will find that particular rant, HERE  

…but as if growing older weren’t hard enough, growing older with one (or in my case two!)  auto-immune diseases (that are running rampant through your body; while the only treatment option available is slowly, but surely poisoning you!) is complete and absolute, bollocks!

We are forced, to helplessly watch, as everyday something else fails or deteriorates.

We try not to be critical.  Tell ourselves, “Beauty’s only skin deep,” “All that glitters is not gold,” “Appearances are deceptive,” “This is only temporary.” etc.  but all the time knowing (KNOWING) that our very own body, is totally fucking us over!

POW! BANG! KA BOOM! ZAP! BLAM!  …you can almost hear the thrashing as it takes place!

A virtual, acquaintance (whom I am just getting to know, but already admire and respect) recently summed it up like this;

“…but as women conditioned to be hyper aware of our appearances (and to internalize a lot of negatives about getting or being old (in a youth oriented and hyper-sexualised world) we cannot ever be completely immune to how we think we “‘look” or “should “look.”

It is so true.

No matter how hard we try (or how old we get) I doubt we will ever be entirely free from that “evaluative, examination of our physical self.”  It’s inbred in us and constantly reinforced by society.

We will forever look into that mirror and find fault with something… maybe it’s that thin skin that breaks open and bruises, oh, so easily.  Perhaps it’s that big ol “moon face,” that appears to be laughing at us, from the other side of the mirror;  or maybe it’s the fact that many of us can’t see our toes anymore, because of our severely bloated “roid” bellies.

Whatever it is… let’s acknowledge it and then (try to) let it go,  because as she said “we cannot ever be completely immune to how we think we “‘look” or “should “look.”  … but we can take away its power by simply recognizing it and releasing it into the universe.

On this, Thursday,  March 8th,  International Women’s Day 2018  let’s give ourselves a break, let’s just for today, be happy with who and what we are and bask in fact that we know the world is so much better off because of all of us!

Namaste.

 

 

 

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Should I Be Making More of an Effort?

Aging, Death and dying, Depression, GCA, Health, PMR & GCA, self assessment, steroids, Uncategorized

Is it just me… or do you find yourself purposefully avoiding social interactions?

Since November (or the “Apocalypse,” as I like to call it) I’ve noticed that I dodge more and more social exchanges, especially those that are “face to face.”

In the beginning, I honestly didn’t have the energy or the strength to socialise.  I was totally drained physically, mentally and emotionally.  It seemed every day I developed a whole new appreciation of what the term “feeling like shit” actually felt like.

There were flu-like symptoms, aches and pains, extreme fatigue, sore and inflamed muscles, insomnia. OH, and that God awful, never-ending, paralysing HEADACHE!  What was up with that?

The exhaustion was crippling.  I could have “Slept for England!”  Although, I didn’t sleep at night, mind you!  Oh no… I was a “Day Sleeper!”  I was down when I should have been up, and up when I should have been down.

However, here I am, 108 days (2592 hours) later, into this Senior Tweak Out from hell… and I think I may just be feeling a smidgen more mellow than I was, way back when.

Not much mind you!!!  …but a smidgen.

Slowly tapering the steroids, from 80 mg, to 75 mg, to 70 mg…  down now to 55 mg, has provided just enough time and space, for some of my “rough” edges to melt away.

{“What was that?”  Oh, it’s just the quick, jerking movement of my husband’s head shaking vehemently, back and forth… }

So as of late, I no longer feel as though I’m hanging onto “Dear Life,” with these weak, dry, brittle, fingernails!  The jittery, restless, edgy (and not edgy in a good way) feeble, old woman… is feeling more hope than dread these days.

Where there was once angst, there is now a cautious calmness.  The perpetual feeling of being antsy, has been replaced with a casual nonchalance.

So the question stands… should I be making more of an effort?

You see, I have become very comfortable and quite content, being alone, in the house,  sitting on the couch, in my bathrobe, drinking buckets of tea, writing self-indulgent blog posts, perusing the healthunlocked.com website and (get this!) working on a quirky art project (more on that later!)

I’m not at all inclined to initiate a lunch or coffee date with friends.  I don’t reach out and call people, who I used to talk to regularly.  I have a “pile” of unanswered correspondence that needs to be addressed, and I must admit I don’t even look at my phone when it rings. *she says red faced* 

I’ve become a recluse.  Let’s say it together…  “H o w a r d   H u g h e s”

Soooo, I can’t help but ask, is this acceptable behaviour for an otherwise healthy, used-to-be-social, 63 year old, extraverted, woman with what is now a old, boring, mundane illness?

Right after the Apocalypse, began, in November, I saw the following on Facebook:

To protect my energy it’s ok to cancel a commitment.

To protect my energy it’s okay to take a day off.

To protect my energy it’s okay to not answer that call.

To protect my energy it’s okay to not share myself.

To protect my energy it’s okay to do nothing.

To protect my energy it’s okay to be alone.

To protect my energy it’s okay to speak up.

To protect my energy it’s okay to move on.

To protect my energy it’s okay to let go.

To protect my energy it’s okay to change.

To protect my energy it’s okay to say NO.

Believe me when I tell you, this became my mantra.  I was not going to do ANYTHING I did not feel like doing.  If the gods had seen fit to strike me down, in the prime of my life *ahem* with a horrible, unfair, chronic illness; then by golly, it was now going to be all about me!

And fair enough!

Except now… I’m not 100% sure my motives are as pure.

Is it really about my energy, or is it about my big, old, fat, moon face?  Am I protecting my inner child, or am I hiding these dry, cracked, bleeding stumps, that some people might call hands?  Am I shielding my fragile, healing soul, or concealing my newly developed “roid gut.”

I can only imagine that you’re as horrified reading these questions, as I am embarrassed, asking them!  …but ask I must!

Have I been fooling myself (and YOU) all along?  Have I bamboozled all of us into believing that I have even the slightest modicum of depth? Integrity?  Authenticity?   Insight?

Or am I (as it would now seem) the most shallow, narcissistic, vain, shell of an old, pathetic women; who’s actually been avoiding social contact because she has not come to grips with the physical transformation her diseases have given rise to?

WTF?  Are you kidding me?

Well.. this weighty topic, obviously requires more analysis, so we will all just have to be fucking patient, while I try and figure this shit out!

 

She May Be a Monster, but She’s My Monster

Aging, Death and dying, Depression, GCA, Health, PMR & GCA, steroids, Tapering off stroids, Uncategorized

me an GCA

Image by Vorja Sánchez

I haven’t felt like “me” since the November 13th, 2017.

That was the last day I actually remember feeling well, healthy; when I last felt normal.  Oh, I’ve had some good days since then, don’t get me wrong… but since that fateful day, things for me have felt a bit like the “Twilight Zone.” 

Being on high doses of steroids is a double-edged sword!  When you take them, you have to contend with wicked side effects.  If you don’t take them, you have to withstand the  crippling symptoms of your illness.

It’s Hobson’s choice really.

Just for context, I have only been on as little as 45 mg per day (and I thought I would die!) and on as much as 80 mg per day (and I thought I would die!), since November.

Once you start taking corticosteroids you’re hooked.  You’re pretty much a junkie, except I doubt that the high is comparable.  And once you start, you can’t just stop!  If you want to get off them, you need to put an elaborate “taper down” plan in place and execute it very slowly, over a period of time.  And even then, you’re probably going to experience some level of “cold turkey,” withdrawal.

Also, and this is not a well-known medical fact, but true nonetheless, once you start taking high dose steroids you spawn your very own, internal lusus naturae!  It’s like this “mini me,” monster thingy, that spontaneously grows inside of you.  And with whom you quickly develop a unique, and peculiar, love/hate relationship!

For me, she kind of just appeared one day out of nowhere.  I saw her, streaking through the house, out of the corner of my eye.  Wide eyed and frantic, darting from room to room.

I soon became aware that she had somehow seized a pretty good-sized chunk of what had previously been ME… my being.  My essence!

She had somehow replaced odd bits and pieces of what had been ME (for the past 63 years!) with odd bits and pieces of HER!

She is similar to me, but in a much more exaggerated, paranoid kind of way.  She’s familiar, yet strange. Friendly, but distant.  I have this odd sense that she and I have met before, but maybe that’s just déjà vu?

I get the distinct impression, she’s here for to stay… at least for a while.

From the beginning she’s been, shall we say… invasive.  I fall asleep, she wakes me up at 2:00 am, wanting to play.  I try to string a simple sentence together and she projects distracting, random images, inside my heard, making me lose my train of thought.  She has an insatiable appetite and all she ever wants to do is EAT!  When she’s not eating, she’s bitching about being “exhausted,”  “fatigued,” “tired!” (Well. don’t get us up at 2:00am, I scream!)  She has this maddening habit of distorting things… up becomes down, right becomes wrong, now becomes later, and nothing?  Nothing always becomes SOMETHING!

However, even with all the chaos and upheaval she’s brought into my life…  she has become my constant.  My one unwavering friend. She is always here.  Always watching. Always waiting in the wings.  She never tires of my company.

She can be a bit judgemental and occasionally admonishes me, but it’s for my own good, I’m sure.  She prevents me from being overly optimistic and gives me a more realistic and pragmatic perspective of things.

One enormous positive she’s brought with her (and has willingly shared with me) is a shaman-like inspiration and sense of creativity.  I’ve always envied people who were able to get in touch with their creative side, as I’ve never been able to even see mine!

Until now…. until she arrived.

You see, the problem is, I am an analyst by nature.  An Analyst is defined as an {annoying} person who studies the elements of something, often breaking it down into smaller {more tedious} parts {that nobody really cares about} to learn how the parts work together and what the nature is of the thing being studied.  (And yes, it is as boring as it sounds!)

Whereas a creative!  A creative is defined as a {magical} person with a never-ending, intense {burning} desire to produce {create, imagine, invent} based on originality {ingenuity} of thought, expression, etc.

Wow, right?  Night and day.

Well…  I truly believe that I have (and it definitely has something to do with her) begun a magical transformation to an opposite, parallel universe!  A place where I (boring, ordinary, analytical, project manager ME!) am more imaginative and artsy, avant-garde and inspired, original and do I dare say relevant?

Un-freakin-believable, right?

However… this presents me with a  bit of a Catch-22, a quandary, a riddle, wrapped inside a burrito!

She’s a cyclone!  An unwanted, dangerous disturbance.  She brings with her destruction and anarchy!

She obviously can’t stay…  but I’m not quite sure I want her to go.

I find myself in a charmed, but hazardous, love/hate relationship with a wide-eyed, unpredictable, steroid fueled monster, who seems rather intent on taking over my very existence!

Yes, sure, okay…  in exchange, she may continue to bestow upon me this magical, intoxicating, outflow of originality and creativity, but at what cost? 

No she has got to go!! 

However…

On the other hand… as she’s already here and she seems so very much at home and comfortable, what’s the harm, really?

I’m sure, as long as I  keep her away from say bright lights, and I don’t get her wet and perhaps if I don’t feed her after midnight… what could possibly go wrong?

Right?

She may be a monster, but she’s my monster.

 

 

 

In Sickness and in Health

Aging, Death and dying, Depression, GCA, Health, Uncategorized

happy wedding.jpg

… yeah sure, but now this shit’s gettin real!

God knows I’ve bitched enough about how these two autoimmune diseases have impacted me, me, me, but there’s another player in the game, isn’t there?

Nineteen years ago, when my now husband (who, by the way is 10 years younger than me!) asked me to marry him, I said “No.”  Why?  Well, primarily because we were so inherently different! …but also because I was sure he would change his mind and want children of his own, one day and that just wasn’t happening.

I set the differences aside and he somehow managed to convince me that he definitely would not want children of his own; and I believed our biggest, potential issue was solved.

Ha! Little did I realise, that the ensuing years would shine a bright light on some other (perhaps not as significant) differences;  i.e. our taste in music (Come on… how can you NOT like Bob Dylan?), the importance and impact of the Vietnam war on our social consciences (He was too young to eat his dinner glued to the CBS Evening News with Walter Cronkite), the significance (or in my opinion the triviality of) the sounds of the Second British Invasion (The Pretenders? Gary Newman? Squeeze? The Buggles? The Alan Parson’s Project?). Sure, these were annoying, but as I said insignificant.

However, even though we have identified a lot of “differences” between us in the past 21 years… it’s been 18 years of  *Ahem* wedded bliss, so I guess we might be okay.

…with the exception of a teeny, tiny wedding vow.

During a Florida Civil Service wedding, the Notary say’s something like; “Blah, blah, blah… to be my husband/wife, blah, blah, blah, to have and to hold from this day forward, in sickness and in health, blah, blah, blah.”

I’m sure our wedding vows were pretty standard.  The only thing I distinctly remember refusing to say was the bit about my promising to “obey,” because that would have been just an outright lie! (and the ceremony would have to have been stopped, because we both would have been laughing so hard!)  …but we did sincerely make all the other vows.

I should stop here and clarify… before you go jumping to conclusions;  my husband is totally fine with the vows.  He has no problem with the “in sickness and in health” promise.

Even now, even though he is mentally, emotionally and to some extent physically shackled to me and my chronic illnesses from Satan’s anus; he is unruffled, nonchalant and unflappable!

For the past 100 days , he has been nothing, but gracious and kind, patient and understanding, loving and sweet. (Damn him… isn’t that just like him!!!)  But that’s his MO. What did I expect?  He is after all, Nick… Nick White.  (In my head, I hear this in a  deep, sexy, alluring, Daniel Craig as James Bond kind of voice).

No, it’s me… I’m the one whose freakin out!

I’m the one who can’t believe 19 years ago, I was worried about babies… (a decision which he never, ever regretted, by the way!) and it was me who questioned his limited musical taste and level of social consciousness!  It was also me who never considered that my being 10 years older than him, could be a problem for us!

What was I thinking?

How could I not foresee that down the road, “I” might be our biggest hurdle to overcome?  I totally missed that I could and probably would (just because I’m 10 years older than him) get sick and throw the poor, sweet, unsuspecting  guy under the bus…  leaving him stuck dealing with an old, sick, miserable, decrepit, woman!!!

It was like a train coming straight at me, but I never saw it!

I guess it was because I “felt” like I was the younger one.  I arguably looked younger, acted younger, behaved younger…  I think I actually believed I was younger!!!!

But alas… just look where we are now.  The worst has happened! I have literally (and almost over night) morphed into that sick, miserable, decrepit, weak, frail, old woman!

WTF?

I cannot express to you how much I despise being dependent on anyone, for anything, i.e.  asking for assistance, relying on other people, being vulnerable, needing someone, and accepting help.  Sure, nobody likes it, but I truly (with every fiber of my being) HATE IT! It makes me crazy!

And yes, I recognise that this is a problem.  I see myself go to great lengths to not accept help, not need anyone, not rely on others… to the point where I do this thing (that my Mom used to call “cutting off my nose to spite my face”) where I doggedly reject help or assistance, making any undertaking or situation much more difficult and sometimes  impossible.

Yes, before you even ask; of course I’ve been royally screwed over by a man!  A few of them actually.

So when I reached my late 20s early 30s, I swore to myself that I would become totally  independent and self-sufficient.  I worked hard and made damn sure I could take care of my girls and myself without any outside help or assistance, from anyone.  I didn’t need a man for anything.  I worked hard and built a tall, thick, strong, impenetrable wall and by God that wall has protected me and my girls ever since!

That was until Nick White, somehow managed to weasel his way into my black heart.  Over the past 20+ years he has worked at deconstructing that wall, brick, by antiquated brick. Damn him!  He has been committed, steadfast and true… just as his Father told me he would be, so many years ago.

He has been dedicated to me and my girls and despite his rather strong “disdain” for children, he has accepted and given love, kindness and wisdom to my daughters and to our three grandsons!

What’s his reward?

Here’s the kicker…  the poor, unlucky bastard finds himself stuck in an intolerable situation, with ME, day in and day out!  Not the fun, crazy, exciting, young at heart, spontaneous me.  Ohhhhh, no, he’s stuck with the new “ME.”  The cynical, cranky, old, tired, sick, negative “bi-yatch” on wheels, ME!

Never… never ever… did I want this to happen!  I would rather die first (ex: cutting of nose to spite face!)  Seriously, I would go gently into that good night rather than have my husband have to deal with this shit!  Call it vanity, call it ego, chalk it up to my immaturity or my deep-rooted insecurities.  I don’t care what you call it… it was NEVER supposed to go down like this.

I’m the CAREGIVER.  I’m the one with the innate maternal instincts. It’s me who enjoys and is so fucking good at managing other people’s illnesses and in many cases their subsequent death!  How did I end up in the bed?

Well…  screw this!

Right here, right now, I set this wrong, right. For his sake and for my sanity, I hereby make a public decree; I go on record as saying that, “I set him free!”  He is set free from this archaic wedding vow, free from all of them, if he wishes!  He is hereby released from this living hell and free to “move about the cabin” of life without me as the ever heavy (and getting heavier every day) albatross around his neck.

Run Nick White…  run far and run fast, while you still can!  Get as far away from this Hell on earth, as you possibly can.  Save yourself! Don’t look back! Don’t be like Lot’s wife… just get out while there is still life left in you!

… but as you run, know I will miss you and please also know…. you got closer than anyone else ever did.

Demons and Self Doubt

Aging, Death and dying, Depression, GCA, Health, Uncategorized

I was actually taken back, as I read the words that I had subconsciously typed.  One by one, each word appeared on the screen and I read…

“I don’ think I can do this?” 

It was last week when I read about a woman who has struggled with PMR for 4.5 years and had reduced her Prednisolone to 2.5 mg daily (just for context, I’m reduced to 65 mg daily!).  After reading her story, I felt like I had been kicked in the teeth!

She was, understandably, feeling down and discouraged because she continues, after 4.5 years, to be plagued, by relentless, unyielding, debilitating fatigue.  In her own words;  “It feels like my gas tank is running on empty.” 

My first thoughts were, “Wow, I can relate to this…  I know about this crippling, perpetual, exhaustion!”  And it was actually kind of cool, that here was someone else I could relate to;  a kindred spirit, a compadre, a virtual friend who felt what I felt.

Then, I panicked.  And from there I started to “freak out!”

I realised, “Hey, wait, I am only 90+ days into this nightmare!  She’s been dealing with this for… WAIT, what?  How long did she say?  Did she say 4.5 years?  WTF!  Nooooo!  No way… I can’t deal with this shit, for another 3 or 4 years! 

Seriously!  I don’t think I can do this!

Yeah, yeah, this is where you get to call me a Drama Queen, you get to call “bullshit” on me, you can snigger at what you think is my clever use of theatrics to try to write a more interesting story…  I truly wish it were any one of those!

But really…  I honestly do not know if I am strong enough, brave enough, tough enough,  or if I have the fortitude to live like this for several years!  

Did that word register with you?  I said, “years!”

I’m already dangerously close to my “sell by date.”  In 3 to 4 years, if I’m not literally “expired,” I’ll be past my sell by date.  By the time I start to feel better and have worked my way though theses shitty autoimmune diseases, I’ll be on the wrong side of 67/68, with most likely an abundance of other “elderly” health related issues and quite possibly on my way out anyway!

So what now?  I just accept this living hell for the next 2, 3 or 4 years…  Only to get through to the other side and expire anyway, like a freaking  quart of milk?

I wish I had the words (and the writing skills) to express just how paralysing and disabling these destructive diseases are.  The continuous pain and the infinite and total exhaustion have to be inconceivable to someone who has not experienced it.

Imagine, for a moment, you.  You’re thinking about completing one of the ordinary, mundane tasks that you might do on any given day;  change the sheets, vacuum the floor, walk to the market, clean the bathroom, whatever.

Choose one.

Now picture yourself, completing that task.  Notice that it has taken you twice as long to complete the task, because you’re breathless, you feel stiff and your arms and shoulders are refusing to do what you  tell them to.

Now, feel yourself, very suddenly (as if someone has hit you over the head with a ton of bricks) consumed by an overwhelming feeling of utter and complete tiredness and a total  lack of energy.  

This isn’t any old tired… you are ready to drop, tired.  Shattered, totally drained, knackered to the point that you MUST sit down or you will fall down.

You get to the couch and you collapse.

Maybe 45 minutes later, you realise you’ve just been sitting there;  totally zoned out, staring at a lamp!  You don’t  know where the time went;  you feel kind of numb and a little confused;  and you realise that’s it.  That’s you for the day.  You are spent, cooked, done.

Let that sink in…  All you have done, is change the fucking sheets!

You’ve changed those sheets a million time.  You’ve done it without even being conscious of what you were doing.  You’ve done it and moved onto five other chores without giving that particular task, a second a second thought, but not today.

Today, changing the sheets has beat you.

Changing the sheets has kicked your ass.

Changing the sheets has crushed you.

Sure, it may get better.

Maybe you’ll get to the point where you can do one or two chores a day before you crash and burn.  Maybe you’ll go out for lunch with a friend; then it’ll be home for a nap.  On a good day, maybe you’ll take the long walk to the grocery store;  you’ll do the shopping, carry it home and make a nice dinner…  but,  you’ll most likely pay for it by spending the entire evening “recuperating” on the couch.

The agonising and undeniable truth here is that your life (MY LIFE!) has been irreparably changed, forever.

Things will never be as they were.

The best case scenario?  Maybe I come out of this tailspin somewhat easily, with only minimal scars.  Maybe the diseases settle down in 2-3 years and the symptoms subside;  I’m able to get down to a tolerable dose of .5 or 1 mg a day; the side effects, of which, are minimal.  I’ll be plagued by few if any “flares” and the pain and total lack of energy will be manageable.  Maybe, I’m no longer a total loser sitting on the couch twiddling my thumbs, staring at lamps.  Perhaps, I am once again a productive member of society!

From my mouth to God’s ears.

Between now and then…  Yes, yes, I know, “there are a lot of people out there who are way worse of than me.”  Yes, I get that I’m being a being “overly dramatic and a BIG BABY about this.”  Obviously,  “bitching and moaning is unbecoming and not at all attractive in any way!”  “People hate whiners!”  I understand this “is not the end of the world” and I should just “shut the hell up and suck it up.”

Yup, got it.

However….  as Evinda Lepins said:

“Complaining is truly my strongest weakness.”

When Strangers Connect

Uncategorized

e_s_n01_wpa00834.jpg

You may have noticed (like you might notice getting hit by a car) that many of my recent rants have related to illness, self-pity, depression, hopelessness and a multitude of other pretty shitty feelings, emotions and mental states of mind.

I admit… I’ve been self-indulgent in channeling my newly found “Poor, Poor Pitiful Me” persona.  Please accept my sincerest, apologies for this boorish and inconsiderate behaviour.

“What does today bring?”  you ask?  Well today is totally different, as today, I am filled with the optimism of Spring and Snowdrops; and with this new day came a new discovery!

Magic happens, when strangers connect!

No seriously!  Hear me out… you know how when you’re “struggling” (and that encompasses an unlimited number of personal, painful, bad states of mind or body); you expect (on some level) to find comfort and support with your friends and family, right?

Of course you do! One would always want to believe their friends and family would be there for them, in a time of need.

… but what about a kind, empathetic, compassionate, genuine STRANGER? 

Since I’ve been unwell, I’ve been frequenting (like a recovering alcoholic attends AA meetings) a Health, social network site. (HealthUnblocked).

It’s a “peer-to-peer” support network, where patients, caregivers and health advocates connect online to talk about their experiences, conditions, symptoms, treatments, health services, etc.  Everything is catalogued in a database and more 2.5 million experiences have been shared!  That’s a LOT of freakin experience.

In this surprisingly safe and accepting space, I have encountered total strangers, people I do not know, who are more than willing to share their story/experience, listen to my bullshit, angst and resentment and take the time to reply to me with a gentle, but honest, caring, authentic response!

No political bullshit, no abuse, no trolls (Well, there this one guy, trying to sell loss weight crap), no arguments, no profanity (Well, there is me and with me there’s alayws profanity!) It’s a comfortable, secure space where people act and are treated like kind, caring, compassionate, giving adults and it REALLY WORKS!

Wait what?

How could this be?  In a country that voted for Brexit?  With peope from the United States of America, who may have voted for Trump. In a world that seems to have turned a blind eye to global human suffering, racism, sexism, abuse and an infinite number of other unspoken atrocities… how could total strangers, possibly co-exist and care about each other?

To quote Winston Churchill; “It is a riddle, wrapped in a mystery, inside an enigma; but perhaps there is a key.”

Perhaps it’s the fact that we are total strangers (who will most likely never meet face to face) that we feel free to drop our facade and be our true authentic selves?

…but is it really that simple?

I mean, these people are “forreal forreal.” 

If they think you’re taking bollocks, they tell you.  If something you said resonates with them, they tell you.  They openly share related anecdotes and personal stories with you, in the hope that they may help you and/or induce you to consider another perspective.

They are genuinely invested.

I have become genuinely INVESTED!

Yes, me!  The of late, poor, poor pitiful, victim minded, up my own ass {ME} has addmitted that my showing concern and genuine interest in a total stranger’s wellbeing, has been as good for me, as it has been for them and vice versa!

My outlook on life, along with my general demeanor, has improved drastically.  I have developed a vested interest in the wellbeing of the individuals who make up this virtual community; and they have developed a vested interest in me!

All of this because we found a common interest, a common bond; we share one or both interrelated inflammatory disorders; PMR and/or & GCA.

So, out of this terrible misfortune and what probabley boils down to bad f**king luck, has come this mini-miracle, of sorts!

Whatever this magic is… it needs to be “bottled,” mass-produced and distributed around the  world.

Think about it, virtual strangers, genuinely caring about one another.  That is no small feat… not in today’s world.

Thanks peeps @ healthUnlocked.com, pmrgcgauk… you ROCK!

Grief, “Pay me now, or pay me later.”

Health, Uncategorized, , , , , , , , , ,

I’ve endured my share of loss; that’s not unusual, since I’ve been on this earth for 63 years. I have lost grandparents, parents, aunts, uncles, cousins, good friends, ex-lovers, and perhaps the most painful of all, both of my siblings.

I’ve always allowed myself, no, forced myself to be in touch with my emotions and to feel these losses deeply and genuinely.  I’m not embarrassed by raw, gut wrenching emotion, never have been.

So… I assumed from a young age, that I had this “grieving” thing under control.

Beginning with the loss of my grandparents, I allowed myself to publicly cry, feel the loss fully, openly express my outrage with God and then went about the business of moving through the stages of grief and loss, as well as a 12-13 year old can.

Some losses I accepted more easily than others.

The loss of my Mom for instance; I readily accepted and was grateful when the end finally came.  Lung cancer that metastasises to the brain, three times… is not nice. I was okay with her moving on.  I had grieved the loss of her, months before it actually happened and other than the normal feelings of loss and separation, any young woman would feel when she losses her Mother, I came out of that experience surprisingly unscathed.  The most prominent, lingering feeling was (and to this day is ) a never-ending loneliness.

When Dad died, that hit me a lot harder.  Unlike Mom’s death, I had no time to prepare.  I got a call and he was gone.  There were no last words, no goodbyes, no time to show or say how much I really loved him.

He just no longer existed.

That loss hung on for a while… it took its toll on me and impacted me on a deep emotional level.  I had regrets and things I had always thought I would be able to make right.

They say time heals all and in time I accepted the fact that Dad died the way he wanted; quickly, hopefully painlessly, by himself under a beautiful blue sky, with the sun shining down on him, while he pottered around the  garden.

I concluded that people died and I was just one of the lucky ones who was able to cope with that harsh reality.

Hahahahahaha!

Then, there was my brother Charlie.  He turned yellow and was dead 9 months later.  “Pancreatic cancer,”  enough said.

I took care of him, spoke to the specialists on his behalf, acted as his primary medical advocate and proxy, stayed with him when he was in the hospital, talked to him about what he wanted “when” the time came…  I did what all good Project Managers do, I managed his terminal illness.  I was with him when he died, helped make the funeral arrangements and thought I was “dealing” with his death pretty damn well.

Imagine my confusion, when months had passed and I couldn’t seem to shake the feelings of depression, anger and resentment.

I was experiencing weekly panic/anxiety attacks, people at work were complaining I was aggressive and belligerent, I was smoking cigarettes, drinking a helluva lot of wine and I didn’t give a damn what anybody said or thought about my behaviour.

When my husband voiced his opinion I jumped down his throat, lit a cigarette, poured a huge glass of wine and effectively tuned him out.

I experienced regular headaches, frequent mystery viruses, aches and pains, used a lot of sick time, and spent many days just lying on the couch feeling like shit.

This went on for well over a year!

I was totally consumed with Charlie, with his life, with his death, his illness;  I found no joy in my own life, no comfort in my family and obviously no solace in being consumed with his death.  It was a dead-end and I was trapped.

I finally got help, but it took years to get through to the other side.  I was told I was suffering from “complex grief.

I had become “sick” because I had not dealt with my grief.  I had successfully managed Charlie’s illness and subsequent death, but never dealt with my own feeling of loss, grief and abandonment.

Skip forward 9 years…

When I left for Boston, at the end of February 2017, I never thought that trip would end with me standing in front of an urn that held my brother Tommy’s ashes.

Originally, I feared he might be suffering from alcohol induced dementia.  Or lung cancer that had finally metastasized to his brain.  Maybe it was CTE, from all those blows to the head…  but I had never, ever considered he would DIE!

The planned, two-week trip, lasted  9 weeks!  What began as my best effort to “manage” and help “sort out” his health issues, ended with me having to make incredibly difficult end of life decisions, on his behalf;  “No, do not admit him to ICU.”  “No, do not put him on ventilator.”  “No, do not administer antibiotics.”  “Please just give him oxygen and morphine and keep him comfortable.”

My brother had decided it was time to die and like it or not, I had to respect that decision.

Again… I believed, under the impossible circumstances I had been given;  I had stepped up and effectively handled a totally inconceivable situation

Back in the UK by early April,  spring and summer found me consumed with wedding preparations.  My youngest daughter’s wedding, in early August, still had a ton of unmanaged tasks.  I threw myself into that like “tie-dye on a hippie!”  I allowed myself to be fully and wholly consumed with the undone tasks and endless minutiae.

The wedding came and went… I remember it as the perfect day, but I’m not sure if what I remember are actual memories or the mental images of what I had so meticulously planned and masterminded for all those months.  It’s all a bit of a blur, if I’m truthful.

August, September and October saw me thankfully back at work and at the hospice helping terminally ill people cross over.  I had also joined the Chaplaincy Team and spent many hours visiting and talking with some phenomenal people.

Then… out of nowhere, Monday, November 13th, found me on my knees.  A blinding headache that had been in the background for 19 days was officially diagnosed as not one, but two debilitating autoimmune diseases.

“History repeats itself because no one was listening the first time.” ~ Anonymous

Have I really gone and done it again?   Have I allowed history to repeat itself, because I wasn’t listening the first time!!!  WTF?

With a lot of time to sit around contemplating my wellbeing (or should I say my “lack” of well-being) I have had this epiphany!

“I manage “grief/loss” situations flawlessly, but I forget to internalize  and deal with the emotional by-products.”  

I subconsciously allow them to fester and froth inside me like the noxious liquid, in a witches cauldron; and then… at the perfect, most inconvenient moment, it all bubbles over, drowning me under a strange and mysterious illness!

It’s my own unresolved grief making me sick! 

It’s not God’s will.

It’s not the environment.

It’s not my lack of exercise or poor eating habits.

It’s not bad luck.

It’s my physical body, screaming, trying to draw my attention to the emotional and mental pollutants being created and left behind by my very own GRIEF!

Talk about the perfect explanation of an autoimmune disease!

Okay… Okay…  I get it!

I submit.

I promise I’ve learned the lesson this time.

Grief just smiles and walks away…  I hear him whisper to himself, in the distance… “Until we meet again, my friend.  Until we meet again.” 

 

Tell me lies, tell me sweet little lies….

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I truly believed I approached yesterday’s “Second Opinion” Rheumatology  appointment with “down to earth,” realistic expectations.

I boasted to my new-found friends, in the PMRGCAuk HealthUnlocked Forum that,  “I wasn’t looking for a miracle cure.”

I was quite emphatic that I knew there was no chance of my receiving a new or different diagnosis; or of being told anything, that I had not already heard.

My exact words were, “I’m hoping only for an informed, educated, experienced second opinion.”  “I’m looking for a tried and true steroid taper down schedule, that’s based on factual historical data, with proven positive outcomes.”  “I’m looking for someone who will LISTEN TO ME!” 

What a total crock of BULLSHIT!

Not only was I apparently lying to all my new friends… I was totally bamboozling myself!

However, I digress…  or am I jumping ahead?

The good doctor from Chertsey came very highly recommended.  He has a wealth of knowledge and experience in the field of Rheumatology, with special interests in  Polymyalgia Rheumatica and Giant Cell Arteritis.  I wanted a “second opinion” because…  well, because this is my f**king life and it’s important for me to be educated and well-informed about my health.

The appointment lasted 45 minutes.  He came across as confident, yet interested in my story.  He listened intently and wrote down a lot of what I said.  He gave me genuine, empathetic glances and verbal cues, at well-timed out intervals. He definitely had experience in this field and he presented his opinions in a clear, well thought out fashion.

It all seemed to be going so well!

…until the appointment was over and we began our drive down the M25, for what would be the longest hour and half journey home, ever.

It was in those first, few minutes of silent introspection that I realised I was not at all happy or satisfied with the experience.  There were no feelings of peace or achievement.  I was disappointed,  let down and very much discouraged.

It was then I started to appreciate that all this had NOTHING to do with him and everything to ME!   I had set myself (and him) up for this colossal failure; set my expectations way too high and albeit subconsciously, I had “pulled the wool” over my own eyes.” 

Duped myself; tricked, deluded, mislead, fooled and lied to myself. 

I never wanted a freakin well-informed, educated, experienced, second opinion. I couldn’t give a f**K about a tried and true steroid taper down schedule, based on factual historical data, with proven positive outcomes!   And, crikey the poor man had listened to me drone on for 45 minutes and not once did he allow his eyes to roll back into his head!

The problem was… I had been expecting a miracle!

I had been hoping for a new (less sucky) diagnosis.  I wanted different options… a more palatable and less complicated disease.  I had secretly hoped that I had something that would be a little less of a bother and a bit more chic.  I don’t know, maybe something like a gluten Intolerance, or a multiple chemical sensitivity, how about Lyme disease?

I experienced an “aha moment.”  That moment you discover that you’ve been a total knob head.  The point in time where you see you were able to (quite convincingly) look yourself straight in the eye and lie to yourself about your very own beliefs and ulterior motives.

I wanted to see this doctor, because I was expecting a different result!

This was a huge (if not very disappointing) revelation!

One of the things I have always prided myself on is my ability to honestly assess and analyse ME!   To objectively look at myself and identify the genuine, straight forwarded reasons for my doing (or not doing), believing (or not believing), thinking (or not thinking) something regardless of how much of an A-hole it made me look like.  And if I do say so myself, I am usually able to do this so well, I have never had to question (or even considered) that I might be able to outwit myself!

Well, the good doctor from Chertsey, wasn’t having  it…

He agreed with everything the original Rheumatologist had said and done;  he even gave her credit for trying the more “aggressive” taper down schedule.  He would change nothing, except (and this only to give me peace of mind) would agree to my reducing by 5 mg every 14 days, rather than every 10 days… but that was entirely my choice.

My PMR/GCA diagnosis was correct.  I’m not different or special or unique in any way.  (Well, other than he did say I was a bit of an anomaly in that I have an unusually high tolerance to steroids! Woo Hoo lucky me! ) There is no fast path, no easy way out, no substitute for steroids, no reduced timelines, no magic bullet.  It is what it is.

There is no way around it, there is only through.

I guess the bottom line for me is… “Know thyself.”

I thought my intentions were pure.  I believed I was further along the path of self enlightenment path, than I obviously am. I thought, for the most part, I was honest, authentic and “real,” with myself.   Hmmmm?

Next time I won’t be so quick to believe me!   I will question and re-question. Assess and reassess. Analyse and re-analyse. Doubt and doubt again….

“The lies we tell other people are nothing to the lies we tell ourselves.” ~ Derek Landy, Death Bringer

 

So How Bad Is It?

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Yeah, yeah, yeah… I can hear you groaning from here…  “Not another f**king blog about illness, depression, pain, death, and despair?”   Why yes, “Thank you for asking,” it is!

So read it, or just move on… because it’s gotta be said!

Rantings of a Madwoman’s Recipe for Depression

  1. Take JANUARY, the worst month of all, 
  2. add a week or so of perpetually dark, cloudy, cold, wet weather,
  3. mix in a pinch of Seasonal Affective Disorder (SAD),
  4. sprinkle with just enough autoimmune disease misery to give it a strong, bitter taste, 
  5. frost lightly with the confusion, disorientation and that “peel me off the ceiling,” feeling you get associated with taking high dose Corticosteroids
And there you have the basic recipe… add to it a measure of your favourite venom and now you have your very own recipe for a perfect depression!

Don’t get me wrong…  I truly appreciate my family, friends and acquaintances trying to keep me positive and in an upbeat mood…  seriously, I do!  To be honest, that’s probably the only thing keeping me from tumbling off the edge; but sometimes you just have to give into that despair!

You have to at least try to understand and value the lessons and boundaries of your own darkness; or else, how can you ever truly grasp and hold onto your light?

I think, deep down, most people are really afraid of acknowledging that they even have an inner darkness… and that has me wondering why?

In the end, if it’s an authentic part of YOU, isn’t it worth knowing? 

If you don’t at least investigate your dark side, aren’t you forever missing out on a vital piece of what makes you, YOU?

What’s that old saying, “…better the devil you know, than the devil you don’t.”  

Sure, I’ll admit it; I may grab onto that miserable, shadowy side of me a little too vigorously (and a little too often), but that’s only because I find her so damn intriguing!

I can’t help wondering,  “Who is this dark, forlorn, woebegone person, who posts images of angry women with a bottle of poison in one hand, a gun in the other and a noose around her neck?” 

I seem to creep (for no obvious reason) from being almost, what can be described as upbeat, into a more sinister, despondent and disturbing version of ME.

But why I ask?  Why?

Yeah, I guess it could be all or any combination of the ingredients in my “Recipe for Depression,”  but this other me has been around since the dawn of my existence!

She’s not new!  She was not created by autoimmune diseases or SAD! She’s been with me always!  I used to try to push her away and deny her actuality…  but if we’re being honest, how can you ever REALLY deny a part of YOU?

You may choose not to acknowledge him/her, you may not accept him/her, but come on, deep down in your heart you know s/he exists.  How can you pretend s/he doesn’t.

I am generally a positive person…  (stop laughing) I am!  However, I don’t subscribe, at least not wholeheartedly, 100% of the time, to the “power of positive thinking” philosophy.  

I believe more in the concept of Yin and Yang.  I believe I am made up of two equal halves and that both halves have an equal right to be recognised, and coexist, as best they can, without annihilating the other half.

“Two halves that together complete wholeness. Yin and yang are also the starting point for change. When something is whole, by definition, it’s unchanging and complete. So when you split something into two halves – yin/yang, it upsets the equilibrium of wholeness. Both halves are chasing after each other as they seek a new balance with each other.”

The word Yin comes out to mean “shady side” and Yang “sunny side”.

Again, how can I know and love my “sunny” side, without at least accepting and embracing my “shady side?”

I truly thank all my family, friends, acquaintances, blog readers and fellow PMR/GCA sufferers who try on a regular basis to keep me on the straight and narrow and show me the error of my negative ways… I really do appreciate your stick-to-it-tiveness!  I’d be lost with out, really! Thank you!

And I promise (even as we enter the second most sucky month of the year, February!) that I will try to get better at being in touch with my Yang, if you do me one, teeny, tiny favour…

Will you, every so often… just for a few minutes… allow yourself to look deep inside and find that discouraged, downhearted, inconsolable Yin half of you, that you may have been denying for many years and just give him/her a simple nod of acknowledgment?

Can you, just for a minute, embrace that darkness that is a part of  YOU and then come back into your light a little more aware and enlightened?

Give it a shot.

It’s liberating!

 

When Death is Imminent

Uncategorized

Originally published January 20, 2010

What must it be like to know, to really know, that your death is days, weeks, months away? I mean sure… we all know we’re going to die, of course, but to know its here, its now, that this is it, “Game Over.”

Can you even imagine?

I hate this photo, because I knew, that Charlie knew, that this was the last birthday he would ever celebrate.  He knew that when he blew out those candles it would be the beginning of his own personal countdown. He’d be giving his “approval” (not that it was needed!) to shut the lights and close the door.

He knew he was dying. I knew he was dying, but we never spoke those words. I tippi-toed around God awful questions like, “Soooo, what kind of arrangements do you want… ya know when… if… anything were to ever happen to you?” (This question was immediately followed by a lot of nervous laughter and long, slow sips from my never empty wine glass.) Hmm! I just realized that questions is actually how I found out (much to my surprise) that he wanted to be cremated. Who knew?

So what must it be like to know your death is days, weeks, months away?

I can only imagine it’s hell. It’s horrifying. Its probaley worse than… well actually worse than “death” itself. However, as I said I can only “imagine,” because as close as I was with my brother, he never let on. He never broke down, he never allowed any fear, anger, or sadness to show through. And he never asked “Why me?” Nope, he stood straight and tall and looked death right in the eye, like he had every other problem he’d had in his life. (Oh, and he had plenty of problems, but that’s another blog!) He kept the devil’s secrets, secret.

In a way… maybe it’s liberating!

Just think about it, to know that you don’t have to put up with any more bullshit! You don’t have to do things you don’t really want to do. You don’t have to go to work! You no longer have to watch your cholesterol or blood pressure! You can just be YOU with no fear of rejection or repercussion. It must be blissful in a lot ways… At that point it really is between you and your “god.” The physical world around you must just melt away slowly and become meaningless.

I miss Charlie every single minute of every single day, but boy did he go out with style and class. Which by the way was the same way he lived his life; style and a whole lot of class.

Posted by The Divine Miss M at 8:22 AM januery