Demons and Self Doubt

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.”

Advertisements

When Strangers Connect

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.”

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….

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?

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

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

Waiting for Wellness

IMG_1493.jpg

When you’re chronically ill, there’s one thing you seem to have a lot of and that’s time.

For every minute you feel like shit, your mind is somehow tricked into believing that much more time has passed, than has actualy passed.

It’s like there’s “well time” and there’s “sick time.”

The speed, at which the milliseconds in each of these parrelle universes moves, is slower or faster depending on how you’re feeling.

Don’t you think, our “well time” should move more slowly, allowing us more time to enjoy and savour being well?

Whereas our “sick time, a time when we are generally miserable, unproductive and not creative anyway, should move quickly and get the hell out of the way, letting us get on with the business of being well!

This is a huge cosmic “cock up,” as far as I’m concerned, because it’s totally backwards!  I’m just sayin…  somebody messed up!

Lately, I have had a LOT of time to think about time.  This is both a good and bad thing.

I am acutely unwell at the moment, with no real end in sight.  So, on the one hand time is moving unusually slowly for me.

My daily routine is exactly the same as it was the day before, with little to no variance; so each day is just me, reliving my own personal “Groundhog Day,” day after day, after day.

Getting up at 4:30-5:00 AM each day, doesn’t help with this whole “time stands still” phenomenon; an 18-19 hour day is tough enough when things are going good… but when you’re unwell, flaked out on mega doses of steroids and staring at the walls, they’re unbearable!

Time.    Stands.    Still.

However, on the other hand (and there’s always another hand, isn’t there?) from a “Big Picture” perspective, where the hell is the time going?

How is it almost February 2018?  Is my new Grandson really almost a year old?  How is it possible my brother died 10 months ago?  Was the “wedding of the century” really 5 months ago?  Did I miss Christmas?

Do you see what I mean?  

The days and hours seem to crawl by, but yet the years and months just speed past!

I am told, I’m in my “Golden Years” (Golden my ass!) Truth is, I don’t have a lot of time left!  If you think about it, I am much closer to my death, than I am to any other expected “life event” that’s left on my list!

There’s not a lot of time to waste!!!! 😵

So really, sitting around here, feeling like crap, staring at the walls is not a good use of my very limited time…  but do I really have a choice?

I think not.

I’m sure the Universe is trying to teach me an important lesson. Something very profound and apropos, about slowing down, or letting go; maybe a lesson about my need to believe I have some semblance of control over things.

Okay, I get it.

I’m open.

I’m ready to learn the lesson and move on,

Can you will the Universe to release its hold on you and allow you to move to the next level?

I can but try… in the meantime, I will try to be content to sit quietly and wait on wellness.

 

 

The Ultimate Betrayal

We-stopped-looking-for-monsters-under-our-bed-whe

I cannot imagine any human betrayal as excruciating as a self-betrayal.

Imagine… your body, unbeknownst to you, makes an arbitrary decision to start producing antibodies, that will attack its own (YOUR OWN) tissue!  This attack will ultimately lead to the deterioration and in some cases to the total destruction of such tissue.

Wait… What?  Why would my body want to do that to me?  Aren’t we in this together?  Aren’t we a team?

Well, guess again…  because that is the hideous nature of an auto-immune disease/disorder.

It’s you, stabbing yourself in back, selling yourself out, double-crossing yourself.  Gives a whole new meaning to the phrase, “Go f**k yourself.”  

An auto-immune disease/disorder develops when your immune system, which normally defends your body against disease, decides that your healthy cells are foreign. As a result, your immune system then attacks the healthy cells.

Nice.

The ultimate betrayal.

You’d think this was a rare occurrence, right?  I mean only a freak of nature could have it’s own body decide to turn against itself, no?

Well, according to the American Autoimmune Related Diseases Association (AARDA) there are approximately 50 million Americans (20 percent of the population or one in five people) who suffer from auto-immune diseases.  Women are more likely than men to be affected; some estimates say that 75 percent of those affected, some 30 million people, are women! 

Ladies… What the hell are we doing to ourselves?  Or, maybe a better question is what the hell are we not doing for ourselves, that we should be doing? 

There’s a lot of speculation out there as to exactly what’s causing these deviant auto-immune diseases/disorders, but I don’t think a conclusive verdict is in.  The frontrunner, proposed triggers include:  

  • 1. Gluten
  • 2. Gluten-free grains
  • 3. Quinoa
  • 4. *Stress
  • 5. Toxins
  • 6. Sugar
  • 7. Chocolate
  • 8. Dairy
  • 9. Nightshades
  • 10. Small Intestinal Bacterial Overgrowth (SIBO)
  • 11. Weakened Microbiome (our highly sophisticated gut ecosystem)
  • 12. Leaky gut syndrome

*Unfortunately, not only does stress cause disease, but the disease itself  also causes  significant stress in the patients, creating a vicious cycle.  {Stress as a trigger}

Truth be told, I think there may be more possible causes, than there are auto-immune diseases/disorders! 

So, we (women) are a competitive lot, huh?  Just look at us competing with the men for all of the historically “male,” causes of death.  According to the CDC, the Leading Causes of Death (LCOD) in females, in the United States are as follows: 

…and now, it looks like we’re leading the pack in the unwanted acquisition of these complex and monstrous auto-immune diseases/disorders too. 

I don’t have any answers.  

In fact, I have unwittingly betrayed myself…  I have not one, but two auto-immune diseases that are kicking my ass! 

I’m embarrassed and hesitant to admit it, but this is the hardest “shit” I have had to deal with, EVER in my entire life.  And that includes dealing with the long term illness and subsequent  death of loved ones, dealing with having a child diagnosed with cancer, heartbreak, divorce, miscarriage, and marriages to assholes, you name it I experienced it! 

THIS IS WORSE.  

It feels like I’m in battle; I’m fighting for control of my body, my mind, my very being. The problem is, I’m in a battle against myself. 

How do I even fight this fight?

the_monster_in_me_by_autumnends Illustration by Anita Kolsen

Metamorphosis

Why yes, this is in fact an actual photograph of me holding onto what is left of my youth, my good health, and apparently a false sense of dignity.

The origins of the word metamorphosis are tied to the Greek word for transformation.  Transformation, is defined as a process by which one figure, expression, or function is converted into another one of similar value.  

I still remember stumbling across that first abyss, which turned out to be my first  metamorphosis;  losing the innocent and free-spirited essence of that young, prepubescent being.  Semi-realising that from a particular point on, I would be forever changed; knowing I was to be redefined, re-labeled and judged in my success (or failure) as a female, a woman, a sexual creature, a partner, or even mother!    

The changes that were thrust upon me way back then were much more abrupt and hideous than the ever constant, more subtle changes I have experienced in the last decade.

Back then, there were bumps and curves, pimples and strange monthly occurrences that sent my young, naive, free-spirited self into hiding forever!

A similar, but much different life force, emerged on the other side of that chasm;  she was quite peculiar, self-conscious, uncomfortable in her own skin, and wholly embarrassed by her very existence!

It took a long time for me to come to grips with that transformation and to shake off the grief and feelings of loss I had for that innocent lost in the process…

I found the whole experience, nothing short of heartbreaking. 

Years later, having reluctantly settled into my new, more womanly aura… I unexpectedly discovered it was time to transform once again.  This time, the evolution transformed me from a young, self-confident, vibrant, sexual creature into someone more gentle, mature, loving, giving and maternal.

Becoming a Mother was one of the most phenomenal sea changes EVER!

My entire existence took a full 180º and everything that I thought I believed about myself, about life and about unconditional love came under profound scrutiny and had to be  reconsidered, re-examined, re-defined and re-evaluated.

I found the whole experience, nothing short of miraculous. 

However, with the day-to-day drudgery of life, work, routine, boredom and sameness…  I  soon settled into this transmutation and it too became rote.

Years passed. I became numb, stagnant and seemingly unaltered.

Then, slowly, indistinctly, almost overlooked by me a new and quite insidious transformation began to take place; MENOPAUSE.  The biological clock stop, climacteric, the change of life.

This mutation of me was long and arduous.  It took its toll on me over many years.  It didn’t help that I was experiencing complex grief after having lost my brother. That just exacerbated the entire, relentless process.

As I teetered on the edge of this vortex, I could actually feel myself slipping away;  my youth, my vibrancy, my essence…  it oozed out slowly from each and every pore of my being into the dry, dead earth.

I found the whole experience, nothing short of hell.  

Ahhh, but alas, as all things do… this too passed.

I made tentative peace with the fact that I was ageing, I accepted the benefits in realising there would be no more children and I tried to see the humour in the fact that my body parts had acquired “minds” of their own and that “Yes,” even my spectacular breasts, were in fact subject to the laws of nature!

Reaching my 60s wasn’t as bad as I thought it would be.  I didn’t feel  particularly old, I didn’t think I looked particularly old and I didn’t have any of those pesky illnesses that  sometimes pop up when you’re in your late 50s or early 60s.

Things were okay… I felt like I was in control and cruising into my “golden years.”  

I would surely die before I got really old or god forbid sickly, right?  (See previous thoughts on my “best laid plans” to grow old gracefully >>> https://wp.me/p4O3T4-1Gn

Well, we are now a little more than 3 years on and as my Mom used to say,  “…the best laid plans of mice and men.” 

It’s a bit sad, somewhat scary and surprisingly liberating to write this next sentence…

“I truly believe I am standing on the threshold of what will be my final metamorphosis.”

I foresee three messy, overlapping, intertwined stages;

Old age.

Ill health.

Death.

The void I stand before now is, in and of itself, quite unique as I know I will eventually transition through to another place/level/state/consciousness… but I have absolutely no idea to where I will transition or what I will transition as (if anything);  but it is, to be sure, my final transformation.

Having recently lost the last surviving member of my original childhood family, along with turning 63 and being diagnosed with, not one, but two auto immune diseases that are quite literally kicking my ass, I think about old age, ill-health and death a lot!

I can no longer pretend that I will be unaffected from the ravages of time or that I, simply because I have willed it to be so, will be spared old age and ill-health and die gently and easily in the middle of the night.

Nope.

It’s far more probable that I too will have to navigate this black hole of uncertainly, deal with my frailties and accept the indignities of my own humanness.

Am I ready?  No

Am I scared?  Yes.

Can I do this?  Absolutely.

Why?   … because I believe this experience will be nothing short of mind-blowing! 

#bringiton

 

If it wasn’t for bad luck…

luck

I believe the lyrics are, ” If it wasn’t for bad luck, I wouldn’t have no luck at all.”

Not an entirely true statement, but humour me; it’s 4:14 in the morning, I’m wide awake and I’m feeling rather dramatic and a bit forlorn.

I won’t readily admit that I’m taking my newly confirmed diagnosis badly, but let’s just say you might feel more comfortable in the company of a peckish Jeffrey Dahmer.  {Look him up young ones!} 

Last night’s appointment with the specialist, Rheumatologist was a blessing and a curse.

On one hand, it was enlightening to learn that there is consensus;  four, different healthcare professionals concur, that I do have both Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA).  

However, on the other hand, there was a part of me that really believed this was all a ruse, and I’d once again hear those words, “Oh, it’s just a virus.  If it’s not gone in 10 days…” 

These two “linked,” auto-immune, inflammatory conditions affect different parts of the body, but are frequently discussed together because PMR occurs in about 50 percent of people with GCA; and GCA occurs in approximately 10 to 15 percent of people with PMR.

Did I just hit a perfecta?  Well, the  odds were 50/50, so I guess it’s not that remarkable! 

Where PMR is an inflammatory, rheumatic condition characterised by severe aching and morning stiffness in the shoulders, hip girdle, and neck; GCA is characterised as a vasculitis of  large and medium-sized vessels and can involve the aorta and blah, blah, blah… I’m bored already.

Honestly…  I do not think I have time for this in my life!  “Is there someone I can discuss this  with?  A manager? Someone?  Anyone? “

There is a certain amount of vindication (quite a bit actually, now that I think of it!) soaring through my inflamed arteries at the moment!

Which feels rather… satisfying.

Over the past couple of years there have been more and more trips to the GP with complaints of various aches and pains.

I can hear me saying, “Look I know I’m in my EARLY 60’s, but this just doesn’t seem normal!”  He’d just give me that sweet, condescending smile; while telepathically patting me on the knee in the most annoying and patronising manner EVER.  

Ahhhh, but looky here, Dr Superior! 

There was something going on!  My inability to walk without pain in my hips, my need to develop the rather clever technique of turning my whole body around, to see over my shoulder, the utter exhaustion for no reason, and those horrible shooting pains down my legs when I was sitting on the couch resting, were NOT normal signs of OLD AGE!

It was f**king Poly-what-ever-you-call-it!

“I told you so.”           

Well, that felt good, but I have to admit much shorter lived than I would have liked…  : (

I really hate to be Polly Anna Pity here, but it’s seriously disheartening to think that a mere 30 days ago, I left the confines of our trendy, Brighton flat, and went off to work;  in less than 10 hours later, I returned home, a woman forever transformed.

I am not sure what this transformation will bring, but I will get to the point where I embrace it and accept it with open arms…  just let me bitch a little bit more.

I’ll come around, just give me some time.