As far back as I can remember, my Dad used to tell me that I was like a “Bull in a china shop.”  It seems that even as a very young child, I would leave a trail (literally a physical trail!) of disruption behind me, wherever I went!

I was (and still am) a bit of a klutz; so often times the pandemonium left in my wake, was something very unfortunate, like a broken vase; or in a more fortunate scenario, just a piece of bric-a-brac, that had been knocked over and left for dead.  In either case, you’d definitely know, if I had been in your shop or home.

The phrase,“Bull in a china shop,” interestingly enough, can also relate to a situation where a person finds him/herself out-of-place or uncomfortable and deals too “roughly” or “directly,” with a delicate problem.  Needless to say, throughout my life I have been known to be a bit of a “Bull,” in this regard as well.

It’s believed that the phrase came about because of real life occurrences that took place in 17th century London, when live cattle were brought into the actual marketplace!  Sometimes they would get loose and stray into the nearby shops, reeking havoc and causing damage and loss of life!  The earliest recorded use of the phrase is by a novelist named Frederick Marryat in a novel titled, “Jacob Faithful.” (1834).

Hmmmm?  I just realised, I’m a bull by nature and a bull by zodiac sign!

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Since meeting my husband in the mid 1990’s, I’ve been introduced to (and have developed a fondness for) Superhero films; Unbreakable, Hellboy, Iron Man (all),  X-Men (all),  Guardians of the Galaxy (both), Batman (all), Fantastic Four, Justice League, Doctor Strange… just to name a few of my favourites;  but I do love most all of them.

It was when Halle Berry was first introduced as Storm, in X-Men (2000), that I decided I needed a Superhero name of my own.  My husband was quick to agree; and based on many factors, least of which my history as a Bull in China Shop, we decided on Chaos!

It is the most perfect name for me.

I have embraced and made every attempt to be worthy of my Superhero name, since adopting it in 2000.  My husband and I often look at each other and roll our eyes or snigger, when I turn too quickly and accidentally break, or knock something over.

It’s not as funny and gets a tad embarrassing, when I “open my mouth and insert my foot,” causing an otherwise lively, fun-filled room of people, to turn deathly quiet.  When the mood suddenly changes to the funeral scene from “Four Weddings and a Funeral,” it’s not very funny.

“Chaos” (as much now my alter ego, as it is my Superhero name) has been aroused and reared her brazen head at the most inopportune times.  For example, at my brother’s funeral, my daughter’s wedding, various dinner engagements with family and friends…  in stores, restaurants and even in the North Laine section of Brighton, when over zealous motorists have wrongly believed that they had the right-away!

She is both a blessing and a curse.

However, she and I happily co-exist; sharing the same body, mind, soul and consciousness, while being aware that we need to give each other respect and space to grow and “be” as individuals in our own right.

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The Cambridge Dictionary defines “mayhem,” as;

“a situation in which there is little or no order or control,”

While Merriam-Webster defines it as:

“Needless or wilful damage or violence” 

Either way, it sounds an awful lot like chaos, don’t you think?

Well…  I could not help but noticing, that when Max (my beautiful, precious, innocent, 16 month old grandson) was visiting last week, he displayed endless periods, of behavior that strongly resembled mayhem!  

With this beautiful, angelic face and smiling eyes, he would “wilfully,” pick up a candle, look me right in the eye and take a big old bite out of it!  He would then, lock his jaw, like a Pit Bull, making it virtually impossible to get the piece of wax out of his mouth!

He’d quickly and without warning, go from holding and admiring the round, colourful, ceramic coasters… to wildly throwing them across the room, like small, lethal, baby sized Frisbees!

There was the small, round, metal, potato masher (that Grandma stupidly handed him!) that he turned into a single, drumstick and proceeded to imitate Phil Colin’s drum solo, on the track “In the Air Tonight – Phil Collins.  The coffee table is still recovering!

He was loving and gentle to all of Grandma’s plants until…  it no longer suited him.  The delicate leaf would, one minute, be held gently between his two fingers and then in a  “blink of an eye,” it was being strangled, in his tightly, clinched little fist!  Never to breath in carbon dioxide again…

It was both interesting and quite disturbing how he could go from calm and inquisitive to devious and destructive, in a microsecond.  It was almost like something possessed him and he no choice, but to act out and be “wilfully violent,” “destructive” and “out of control.”

Hmmm?  It makes me wonder…

Although he looks exactly like his Daddy, could he have inherited the “chaos” gene?

Could he be the next Bull in a China Shop, but with a more modern, destructive, mayhem element to it?

Perhaps he and Grandma should team up more often…  maybe we could capitalise on this?

Perhaps we could be a famous, Superhero Duo!   I can see it now…

Chaos and Mayhem; Wreaking havoc, wherever they go! 

An actual photograph of my knee, this morning.

I should have known, a couple of weeks ago, when the debaucherous  London Birthday Bash Weekend, didn’t “kill,” me…   Or last week, when I reduced my steroid intake by 5 mg didn’t feel overwhelmed by fatigued, exhaustion and withdrawal symptoms. Or, better yet, this past week, just because I’ve felt so “freakin good” for two whole weeks now…  Seriously, how could I have NOT seen this coming?

Yes, yes, I’m an idiot!

I should have known that “The Universe,” was plotting against me.  That it was off in a corner someplace, cooking up some wicked, diabolical scheme to get me.

Had I listened closely, I may have heard the Universe say, “I’ll just give her a bit of time to instil a strong,  false sense of security,”  “Make her feel all is well, so she’ll let her guard down just a smidge….”  “Ahhhhhhh, there we are!  She really is such a sucker…. LOOK!  She’s buying it, hook, line and sinker!” 

…but I wasn’t listening.

I was too busy partying, drinking wine, eating bread…  “Oh sure,” my knee hurt!  My knee always hurts.  However, I found that, if you drink enough red wine, it doesn’t hurt half as bad; but for some reason your head starts to hurt instead!  “Hmm, go figure.”

So… you may or may not know (you may or may not care) I have a “bad” knee.

I screwed it up a few years ago while on a walking holiday through the hills of Tuscany!  It was an AMAZING holiday, one that I throughly enjoyed, and will never forget…  but waking between 7-15 miles a day (when you’re not used it) up and down, rocky dirt roads, puts a real strain on your old lady knees!  “Who knew?”  

My good ol GP (dick that he was!) thought, at the time, that I had torn my meniscus, but since I was “a woman of a certain age,” and not a professional athlete, I was told the NHS would not consider treatment.  I should ice it, take ibuprofen, do knee exercises and be gone from his sight!

Over the past couple years it got better, than worse, than better and more recently way, way WORSE!  To the point where I find it difficult to walk and when I do walk, I limp and wince in pain with each step.  (Yes, I can hear you now…  “Ooooo, very attractive Melissa!”)

To exacerbate the situation I have also developed a “Bakers Cyst” behind that same knee.  This is quite common, because your body naturally tries to heal the damage by sending a lot of thick, yucky, fluid to the area to cushion and protect it.  Unfortunately this fluid forms into a sack and just sits there, right behind your knee making it difficult to bend/straighten your knee and not really cushioning or protecting  at all! Very helpful.

Anyway, I digress…  sorry.

Today, I went to see an Orthapedic guy…  privately, not on the NHS.  I wanted to know exactly what the issue is and understand what course of treatment and options this “knee expert,” would recommend for this “woman of certain age.”   

I fully expected him to say I had in fact torn my meniscus, and that for several hundred pounds (plus our private insurace coverage), 6-8 weeks of my time and maybe some physio, he could fix me up like new, with keyhole surgery!

Soooooo, after a short discussion I was sent off for an x-ray.   Once back in the Mr Chauhan’s office, I was staring at an x-ray on an oversized desktop monitor.  The image looked very similar to this:

I had no idea what I was looking at, until the good doctor pointed out the obvious space between the two bones on the on the left side of the image; and the not so obvious space between the two bones on the right side of the image.

“Hmmm, that’s curious, “ I thought!

As I slowly drew my attention away from the monitor, I heard words like “degenerative,”  “arthritis,” “torn meniscus,” and “bone on bone.” 

Wait. What?  Did he just say “Degenerative arthritis????”   WTF? 

It got much worse…  I actually stopped hearing the Doctor’s voice coming out of the Doctor’s mouth and instead, heard the Universe laughing and saying, “Hahahahaha, gotcha!” 

When I did hear the good doctor’s voice again, it was very serious with no hint of a late April Fool’s joke in the play…  I heard, “You need a total knee replacement.” 

WTF? Are you fucking kidding me?

“But wait…. What about keyhole surgery?  What about options?  What about…  what about something other than this?” 

As he peeled me from the ceiling, he responded to my line of “speeding bullet” questions:

“No, mending the meniscus will not help.”  He would not perform that surgery, if I wanted him to.

“No,” he would not remove the Baker’s Cyst, that will not help.

“Yes,” I can continue to have it drained, but it most likely will not provide a lot of relief from the stabbing, “ice pick” like pain on the side of my knee.

“Yes,” degenerative means that it will get worse over time.

And the nail in the coffin statement went something like this,

“You will most likely have that knee replaced at some point in your life… you do not have to do it now, but the pain will get to the point where it is perhaps unbearable and your quality of life will be impacted more than it is now; and you will at some point have to make this decision.” 

He was informative, not reactionary, honest and very calming.  We talked a little about my having PMR & GCA, the increased risk of infection because I’m on high dose steroids, my taper down schedule, and the fact that he would work closely with my Rheumy,  if this is the road I chose to go down… We also talked a little about the pros/cons, risks/disadvantages of waiting a few years.

HOWEVER, he kept bringing me away from the minutiae (calling them mere logistics) and brought me back to ME!

What did I want?  Did I want to take invasive action.

He kept reiterating that I needed to think, long and hard about this;  do my research, get a second opinion, talk to my husband, and determine if I wanted to take invasive action.

If I do, then we start talking about when, where, how, and the “logistics” of performing knee replacement surgery on a patient like ME!

“It doesn’t have to be now,”  he said.

“I don’t need to be the one to do it,” he reminded.

“You can take all the time you need,” he said.

It appears however…  that in all likelihood {I guess unless I die of maybe a thoracic aortic aneurysm} I will have to have my right knee replaced at some point!

Ahhhhhh, Universe you foxy minx.  You got me again, didn’t you?

Fool me once shame on you, fool me twice shame on me!

The quickest way I’ve found to lose friends or minimally, just be disengaged from them, is to become chronically ill.

Works like a charm!

It may take a while, but stick with it, in the end, they’ll crack!  They all do. Can’t say I blame them, really…  I mean seriously, I find being around me a bit of a bore and quite tedious, at the best of times.

Day after day it’s the same fucking thing…  I don’t even have to say a word; you can see it in my eyes, it’s written all over my face… “I’m exhausted,”  “I  don’t feel well,” “I have no energy.” “Today’s not a good day.” 

I dread when a friend or acquaintance asks, “How are you?”   I usually teeter on the edge of telling an outright lie and telling the boring truth, for at least several awkward seconds.  I’d say 60% of the time I respond with the proverbial “Ohhh, I’m okay… thanks,”  but there’s that other 40% of the time, where I just tell the goddamn truth!

“Hey you asked…. if you didn’t really want to know you shouldn’t have asked!”

“I feel like shite, actually.”

I’m exhausted.  I have no energy.  I don’t go anywhere.  I don’t  do anything.  I don’t see anybody.  I’m isolated and feel lonely, but I don’t have a real desire or the enthusiasm, to change that.  I miss interacting with people, but I lack the drive and “oomph” to make any meaningful interaction happen.  If I do make plans with you, I will most likely end up cancelling them at the last last-minute anyway, so what’s the point?

What a joy, huh?

As I watch them slowly back away, *their eyes darting left to right in quick, jerky, “fight or flight” movements*  I realise I’ve gone to far…  again!  It hit’s me like a ton of bricks, that the “question,” was, in fact, rhetorical!  It was asked with the intent and understanding that it would be answered with a pleasant, socially acceptable response, such as;  “Fine, thank you, and you?”  

The “question,” was NOT a genuine invitation for me open this smelly, maggot infested can of… can of, well can of MAGGOTS!

Sorry, I apparently misinterpreted the situation…  again!

I get it. I do.

Sick people are NO fun to be around at all!  Especially those of us who are only  chronically ill.  I mean maybe, if we had terminal illness of some kind, our friends might be more inclined to stick around a little longer (some good friends, may even last the duration if you’re terminal), but even terminal gets old.

When you’re dying, it reminds people of their own mortality and makes them think about the time they may or may not have left.  It makes them face those uncomfortable questions and look at their lives in earnest… and come on, let’s be honest, not many people want to take time out of their busy, fun, day-to-day schedule to examine their life!

I have seen many close friendships (and some family relationships, as well) crack under the pressure of a terminal illness.

A serious, chronic illness is maybe like one step down from a terminal illness… maybe two.  We’re really sick, but we’re not dying. We’re going to be sick for a long time, but still, we’re not dying.  We’re poorly, pathetic and perhaps perpetually needy, but for fuck’s sake we’re not dying!

I think our healthy friends get confused by the fact that they don’t really understand our illness; they’ve most likely never heard of it before, they can’t see it and let’s face it, most of us look (and act) like we’ve just become a bit lackadaisical and put on some extra weight!

All they know is that we’ve changed.  We are not as much fun as we used to be.  Maybe we don’t drink anymore.  Perhaps we can’t stay out past 9:00pm, or we don’t even venture out of the house after 5:00!   We don’t add much to the conversation, because all we have is our illness, our meds, our taper down schedule, our aches and pains, etc…

WOW! 

I just had the most sobering thought!  What if NONE of this RANT resonates with ANY of you and I’m the ONLY one who has had friends disengage?  Maybe I’m the only one who has allowed herself to be socially incapacitated by PMR/GCA.

OMG!  

Well… I’m glad I put that out there for all to see!

Anyway, I digress…  we have changed!  We are not the same.  We have morphed into totally different people and frankly, we do suck, a lot of the time.  It’s not out fault.  We didn’t choose this, it just happened. We’d change back to our “old selves,” in a second if we could, but that is not a choice we have.

I have every faith that some of my really good friends will be there when I finally shake the shackles of these diseases.  Oh sure, the relationship/friendship will be different…  we will have lost a few years of close, intimate, authentic sharing and growing, but we’ll pick up from where we left off and carry on.  Hopefully.

There is also the hope that I will have made some new friends!  Maybe I’ll have strong,  new friendships that will have been built on this festering can of maggots!  I mean come on, having all this in common, will surely bring us together…  if for no other reason than, “…misery loves company!”

Que será, será

I can’t stop it.  I can’t change it. I can’t control it. I won’t worry about it.

I accept that there are some people who are in my life now that may not be here in 1, 3, 5 years…  and that’s okay.

I freely release them,  from the now sickly, bonds of our friendship.

I have every faith,  I’ll see you on the other side…  maybe.

Yes, I admit it…  I’m human. 

I look at the people around me, living “normal” lives, and I am resentful. 

Strong feelings of envy rise within me, as I continually witness their comings and goings.  I crave that seemingly unending energy, ease of movement and zest for life!  I see them (YOU) enjoying life, and all it has to offer, and frankly…  I’m annoyed that fate has chosen a different path for me.

WTF? 

Yes, yes, I know it’s never cool to ask “Why me?”  The “bigger,” more altruistic question would be to ask, “Why not me?”  …but I’m not feeling very righteous or noble today.  The more familiar accepting, philosophical, giving “me” has apparently joined everyone else and buggered off down to the pub, to have a few laughs!   

It’s not just the adventurous, out-of-the-ordinary, pleasurable stuff I covet…  No, oddly enough, I truly desire the normality. 

I’d like to able to able to accomplish (without feeling like I’ve run a freakin marathon!) those mundane, humdrum, ordinary tasks that people do on a day-to-day basis, without even thinking about it!  Make the bed, go shopping in town, meet a friend for lunch, go out to dinner after the “Early Bird Special,” has ended, get back to my volunteer work at the hospice…

Is that really asking too much? 

In an effort to hinder this snorkel (and possible suicide attempt) in the “Sea of Self Pity,”  a friend, kindly remind me of all the things that I am able to do.  Honestly (and I’m sure it’s because of the vile mood I’m in) I found several of the things on the list pretty pathetic!  Seriously, I think we’re grasping at a few straws, here.  I mean let’s not break our arm, patting ourself on the back because we removed a few scratches from the purple leather couches!

Admittedly, though…  there were a few things on the list that made me smile and feel a bit proud.  … but that’s not the point!  We’re not here to write about feeling proud; we’re to write about envy and the green eyed monster!  Damn it! 

{By the way… G_G, I do so appreciate you taking the time to come up with that list!  What a lovely thing to do to lift my spirits and try to make me see things from a different perspective!  And “Shhhhh,” I looked at the list again, and some of those things are kind of impressive! Thank you!!!!}   ; ) 

It’s now been 170 days (or 5.58 months) since my life was irreparably altered by two weird and virtually unheard of autoimmune diseases.  This means, I have somehow lived through, but without really remembering or truly experiencing;  Thanksgiving (albeit a British Thanksgiving, which is called, Thursday) Christmas (and Christmas shopping), New Year’s Eve & Day, Max’s First Birthday, Super Bowl Sunday, Valentine’s Day, Arielle’s Birthday (Did I even get her a birthday present?) and a plethora of GP, Rheumatologist,  and A&E visits, as well as numerous blood test appointments, bone density tests, scans, eye tests and a lot of poking and prodding by total strangers!    

I seem to have lost 5 1/2 months of my life! 

I float through life, without really grasping, or experiencing it.  One day just melts into the next and it sometimes feels like I’m the female version of Bill Murray in a remake of “Groundhog Day.”  I catch only pieces of my life, as they drift by, but the “big picture,” always eludes me.  I feel as though I have lost my direction and most of my true purpose.   

How will I cope for the next 2-5 years?  What can I do to remain relevant? What do I do when these four walls no longer contain me? What if “ranting” isn’t enough? 

Hopefully today is just a glitch in the matrix.   

Perhaps today’s weather; which is cold, dark, rainy and windy, has me in a funk.   

Maybe I have “Cabin Fever.” 

It’s possible the “Green Eyed Monster” has crept into my brain and seeded these destructive, thoughts of self doubt.   

Maybe all of this “alone time,” has taken its toll on my mental health?

It’s not like me to feel “green!” 

This is not me!!!!  I usually take pleasure in your accomplishments and celebrate your successes;  I enjoy living (vicariously though I must) through you and enjoying your  experiences and triumphs!  I truly want to feel ecstatic for the lady who just returned from Nepal (my lifelong dream trip!!!) and India, not feel resentment!       

Here’s hoping tomorrow will be a new day and I will have taken on a new colour, because I’ve decided, green doesn’t suite me; however, I have realised, once again, that I am…. only human. 

Actual photo of me, taken this morning!     TONY SANTIAGO MOVIE/TV FAN ART

I recently joined a few PMR/GCA Facebook Groups.

Yeah, I know…  I’m not exactly thrilled with Mr Zuckerberg or his “Facebookgate” buddies either, but I’m still semi-addicted to that social media platform, as a way to keep in touch with friends and family; and it’s not like I get my news there!!!!!

I still throughly enjoy and I am 100% indebted to the Healthunlocked social health network!  For the past 5 months, the amazing HealthUnlocked PMR/GCA community (which has a membership totalling 6,473!) have provided me with support, empathy, understanding and sound, practical advice regarding my PMR/GCA diagnoses and everything that encompasses.  It’s my first stop each day, after I prepare my yogurt and count out my Prednisolone tablets!

However, joining the Facebook Groups, has given me access to a whole new group of people (in my same situation), but who communicate on a seemingly different level and in a more laid back, informal, and “social,” (versus informative/educational) manner.

Not better or worse, just different.

People on Facebook seem to speak more openly and freely;  it’s like they’re having a private conversation, with a friend, over coffee.  They share more about themselves; their family and their friends.  They will quite openly tell you if they’re suffering with hemorrhoids, or state, quite emphatically that “Beet Juice” has been “scientifically” proven to be a cure for PMR and GCA!

And that’s okay.  I feel strongly that it’s my responsibility to “fact check,” everything I read, when it comes to these two autoimmune diseases and I should be held accountable for what I choose to believe.  If I’m gullible enough to believe everything I read, without verification, well shame on me!  I deserve to be sold that big, ol, greasy, green bottle of “Snake Oil!” 

Anyway, I digress…  what I have noticed on the PMR/GCA Facebook group discussions,  that I have not observed on the HealthUnlocked site, is the slightest, on-going, undercurrent, of what I can only describe as a subtle, snideness. 

It is subtle, as I said, but like “pornography,” you may not be able to describe it persuasively, but you know it when you see it.  At least you know what it is to YOU!  After all, one man’s pornography, is anther man’s…  “Oh, never mind…”  I’m not going there!

What you should know, before I get into this rant…  is that, (according to numerous statistical websites, that I shall not reference, because they’re freakin boring!) is that women, are 2 to 3 times more likely to have PMR and/or GCA than men!

So, it stands to reason, that the majority of us on Facebook, HealthUnlocked, or any other  PMR/GCA dedicated site, are women.  

So… what I’ve noticed (and I am treading ever so lightly, as I absolutely do not want to piss anyone off!) is that some people, who are on perhaps a less challenging PMR/GCA journey, occasionally (and I’m sure quite unknowingly) make comments, that could potentially  make others (who are experiencing perhaps a more challenging PMR/GCA journeys) feel somewhat diminished…

Okay, this is bullshit, I’m just going to say it!  After all, this is my fucking rant and this needs to be said… 

Some people say a lot of shit on-line, that makes ME (and maybe some other people too!) feel guilty, embarrassed and in many ways inferior.

There, I’ve said it

Yeah, yeah, I know I have issues…  Yup, I’m damaged goods emotionally, but YOU have to accept that YOU need to take some accountability for YOUR words!

I mean isn’t that what basic empathy, in the context of a conversation, is?

When you say things like, “…pain is not an option for me,”  I immediately ask myself, why I’m apparently  such a big baby?  Why do I allow pain to be an option for me?

When you gloat, (and I mean gloat, not just casually mention!) that you “beat PMR” without ever taking steroids; it makes me wonder what the hell is wrong with me?

When I see someone write, “I just refuse to give into to it,”  I feel bad and ashamed, because I refuse to give into too, but “it” (like the hideous monster it is) turns around, punches me in the gut, and tells me to shut the fuck up and keep walking!

Good on you… no seriously, good on you!!!!

If you’re managing your illness without steroids, BRAVO! 

If you can control your pain with over the counter pain killers, well done!!!

If you can get through, more days than not, without having to take a “nap,” than by all means thank your lucky stars above, because many of us cannot.

If you have continued to work, manage a family, have a social life, or go to school, after your PMR and/or GCA diagnoses, than thank God, Mother Nature, and the Universe, because YOU are one of the lucky ones!

I agree 100% that steroid treatment is the WORST!  It totally sucks, but for those who suffer the devastating, debilitating and very “extreme,” symptoms of the PMR disease… they have no choice!  There are no options for them.  Steroids are the only thing that will reduce the inflammation and until they do that, they are fated to the experiencing the catastrophic symptoms of the disease.  {Note: Those impacted by GCA MUST take steroids or risk going blind, they have NO CHOICE!} 

The answer is simple… we need to acknowledge and accept that the disease(s) impacts everyone differently.  No two cases are alike. Nobody feels the same, exact symptoms as you do.  Nobody’s experience is the same as YOURS!  Your pain level is not the same as my pain level.  Your inability to move is different from my inability to move. Neither disease is “one size fit’s all.”

It saddens me when I read comments like the ones above…  It makes it sound like the rest of us aren’t trying hard enough.  Or maybe we’re weaker than you somehow, or that we’re just failures.

We are all in the same battle… and the majority of us are women.  Can’t we just accept that some of us are being attacked more vehemently, by these diseases, than others?  Can we recognise that not all PMR/GCA struggles are created equal?  Let’s not knowingly or unknowingly make our “sisters” (or our brothers for that matter!) feel bad, or feel “less than,” because they’re not managing or coping with their disease(s) as well as you are.

I’m ecstatic for those of you who continue to “have a life,” after PMR/GCA!  Seriously,  I am thrilled for you and I live, albeit vicariously, through you!

Go! See! Do! Enjoy… but please, while you’re out there, be our Ambassador 

Let people know that we’re at home, on the couch, taking a nap, because we have no choice!  We’re not at work, because we can’t work.  We’re a bit “dazed and confused” because steroid treatment was the only treatment we were offered; and without it, we’d perhaps be lying in a pool of pain, paralyzed, blind or half dead.

Let them know how horrible these diseases are!  Talk to them about the pain, fatigue, embarrassment and heartache that we experience every single day.  Help them to understand that these autoimmune diseases are REAL, they are devestating and that they affect everyone differently.

Let them know that YOU are one of the lucky ones;  managing to be productive and function, fairly normally, out in society!  However, let them know also, that it’s not easy for YOU either!  You too struggle with fatigue, pain, Pred Head, thin skin, loss of memory, moon face, weight gain, lack of self-confidence, etc, etc , etc.   The list goes on, and on, and on for you too!

Go! See! Do! Enjoy… but please, be our Ambassador! 

Don’t knowingly or unknowingly make us feel bad about ourselves or our ability to deal with our disease(s).

…because after all, we’re all in this together.

Like Howard Beale, I too am mad as hell! 

Yes, I know you’re sick to death of my incessant rantings against the unfairness of life, growing old and of being sick! 

Tough shite.

Again, (and this means you too “Anonymous”) if you don’t like it, don’t read it!

I get that my tirades are becoming boring and empty and that nobody really fucking cares anymore… if they truly ever did.  Whatever; that doesn’t stop my need to… “NO,” my obligation to speak out. 

“Choosing with integrity means finding ways to speak up that honour your reality, and the reality of others… ”  ~ Terry Tempest Williams

Like it or not, this is my freakin reality.  I didn’t ask for it! I don’t want it… but “it” is my life now, I have no choice;  I’m obliged to speak my truth!

I don’t rant just for me…  I rant for all of the others as well;  the others that you (you who are fortunate enough to be healthy and well) don’t know anything about!  Please don’t misunderstand, I don’t criticise you… I used to be YOU!

Now… I’m with them.   I’m with the ones who sit, by themselves, on a couch and suffer in silence; the ones diagnosed with some weird, obscure, auto-immune disease that nobody’s ever heard of and that has since turned their lives into a living HELL.

For all you know one of them could be your kid’s “frail” teacher, your “A-hole” boss, or that co-worker who’s always taking time off of work.   

There are a lot of us out there who don’t want to be “a bother,” or any “trouble” to our family or friends.  All of us who, when asked,  “How do you feel?” will always respond,  “Fine, I’m fine…”   

The poor suckers, like me, who were unlucky enough to roll out of bed, one ordinary morning and have the god-damned day turn out to be ANYTHING, but ordinary!  

I speak for them… you want to know why?  Because some of them, are too sick, tired, frustrated and fed up to speak for themselves.  They’ve been beaten down, by a relentless disease that kicks their ass 24 hours a day, 7 days a week, every month, for years!

Some of them have just stopped trying.

They’ve stopped trying to explain to you, that they are not lazy.  They are not seeking attention.  It’s not all their head.  They know adopting a more positive attitude, won’t really change a damn thing.

When they’ve told you they were “exhausted,” they meant that they were physically, mentally and emotionally unable to connect with any reality, in any real or pleasurable way.  They were spent, depleted, drained, emptied, burnt out, unable to connect.

Did you hear them?  Did you listen?

Many of them, who have been stuck in this cyclone of shit, for a very long time…  feel that you don’t hear them anymore or that you even care…  so why should they bother to speak at all.  Better to save their energy for more important things.

When you say things to us, like;

“You don’t look sick,” 

“Maybe if you just go outside and get some fresh air, you’d feel better…” 

“Yes, I hear ya…  I’m exhausted too.”  

“Maybe you just need more exercise?”

“It will get better…  I’m sure… just push through it.”

“Have you tried….”

…please know, (and I say this ever so gently… ) we want to kill you!

We never would of course, but please know, NONE of these things is remotely helpful or productive.

We have a devastating, destructive, debilitating disease.

Auto-immune diseases are as “real” as a heart attack!  They are as real as cancer, asthma, diabetes, COPD, cystic fibrosis, heart disease, Parkinson’s… and all the rest!  Just because you can’t see the disability and we’re not represented by a distinguishable symbol like a trendy “Pink Ribbon,” or a cool, coloured, silicone bracelet… doesn’t mean our pain and our struggle isn’t real.

These diseases destroy lives.  They come out of nowhere, grab you by the ass; eat you up and spit you out.  Your life is irreparably changed.

It’s difficult to pin down the current global statistics, but the National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune diseases.  That’s only Americans and the NIH numbers only include 24 diseases.  Many auto-immune  website  say there are over 80 different auto-immune related diseases!

That’s a lot of fucking sick people!

We’re out here.

And hopefully we are (in much greater numbers) becoming mad as hell and not going to take it anymore! 

I have fantasies of a REVOLUTION; a revolution where people impacted by devastating auto-immune diseases like Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) demand to be heard!  A revolution where our GPs and Rheumatologists are forced to take us and our symptoms seriously!  A revolution where drug companies are encouraged and incented to look for better, more effective medications to treat and alleviate our diseases symptoms.  A revolution where we’re not embarrassed or uncomfortable to openly talk about our disease, and we don’t automatically just make light of it to ease tensions.

A revolution where we have our own immediately, recognisable symbol or brightly, coloured bracelet.

Perhaps even a slogan?

How about…

Autoimmune disorders:  “Yes, even your body hates you!”