Does Time Fly By, or Crawl By?

RAMBLING ALERT!

I realized after writing this, that I rambled a bit…oops! ūüėÄ Also, I tried repeatedly to just show the Summary where folks could click on “more…” if they wished to continue reading instead of one long post. But in months I’ve been away, they changed that several functions and I can’t quite figure it all out yet. Sorry about that.

Moving right along now with the actual post…

The concept of time really has me all screwed up this past year.  Sometimes it seems to fly by so fast I get windburn, but at other times I could swear it stopped altogether!

It’s been a year now since I started this blog.¬† So many wonderful people immediately welcomed me to this wonderful online space that is WordPress, and for that I will always be grateful!

I’ve had so many false starts and still haven’t used this blog as I originally intended…

You see, this blog was (and still is) meant to be my space.¬† The place where I could say whatever I wanted, about any topic, and not have to constantly worry about how people in my “real” offline world would react.¬† I’d kept so much bottled up for so very long, just trying to keep the peace, that I thought I might go completely bonkers.¬† Or postal…

I had, and still do, tons of thoughts and ideas rolling around in my head.  Getting them onto paper (so to speak), where other people could actually read them, has proven a lot more challenging  than I had expected.

In one sense, blogging is a lot like journaling, but then again, it’s really not.¬† Over many long years, I’ve filled countless paper journals, but coming up with a post that wouldn’t later make wish I could crawl under a rock and disappear… ūüė≥ ¬†Well now, that’s just a whole different ball game!

Which brings me back to the title of this post, “Does Time Fly By, or Crawl By?”¬† Speaking for myself, I would have to say both.¬† (As I suspect it does for almost everyone. ūüėČ)

When I started this blog it had only just over a year since I was diagnosed with MS (Mulitple Sclerosis). As I state right in the “About Me” area of this blog, the diagnosis was decades in the making, and when I started this blog, I was still very deeply buried in the angry phase of grief.

Angry that I’d been ignored by the medical field for so very long.¬† Angry that even with irrefutable proof glaring back from the MRI scans that not only did I have MS, I’d had it for a very long time.

Angry that still, it wasn’t good enough for some people in my life to believe I wasn’t a lazy cow and hypochondriac. ¬†Yeah, well I don’t talk to those particular people anymore. ¬†Family or friend, they had to go.

Furious that my GP (family doctor) still did not, and to this day still does not believe my various symptoms are as bad as I say. Furious that he refuses to educate himself on studies taken over the last 20 or so years proving beyond a shadow of a doubt that yes – unlike decades of the incorrect assumption widely accepted by the medical field worldwide, that MS is essentially a painless disease – which he still believes to be true. Yes doctor, MS DOES cause pain, in many cases a lot of pain.

Unrelenting, never breaking, drive your nearly to the point of insanity kind of pain. Even my neurologist has told him so, and stated that I need better pain control to have any decent quality of life. His answer? Nope! Almost a year ago, he cut back what I was barely surviving on to less than 1/2 the dose, and recently made another small cut in the number prescribed, and again, without consulting me or the neurologist. I have barely left my home at all this past year. I made it to one movie with my husband and a friend, and all other “outings” have been for various doctor & specialist appointments, and medical tests. And for those I have “outings” I have to portion out my meager supply of pain meds to get through the day, yet each one still costs me anywhere between 2 to 7 days in bed recovering. (And no, there is still no option to find another GP where I live.)

Angry that year after year, decade after decade, my health continued to decline, my disability to accrue, and still, no-one could be bothered to take me seriously.¬† Seriously enough to do the one single test that would have shown what the core bloody problem was to begin with!¬† God knows I’ve had every other invasive and embarrassing test done, repeatedly, over the span of 30 years. Hell, despite now having enough proof to convince even the biggest skeptic, my GP still doesn’t believe the MS is not new or, that most of my symptoms are very real. ¬†(Though I suppose after he spent nearly a year convincing me that all the various specialists I was sent to until that fateful MRI was finally done and analyzed by one of the country’s top MS specialists, who was shocked no one had done one before given my medical history, categorically said no more tests were needed. ¬†That first set of MRI scans left zero doubt in his mind that I had MS and had had it for a very, very longt time. ¬†Once my GP got that report he could no longer deny the truth, but over two years later is being very selective about the severity and the length of time I’ve had it. ¬†Still, for him, that’s actual progress!) ¬†Sadly though, he still balks at treating anything related to the MS and the neurologist can’t see me nearly often enough to write prescriptions or handles relapses. ¬†So for the latter, and when the pain drives me to a breaking point, I go to the ER. Which the ER hates because it’s a huge waste of time, resources and taxpayers money, and the GP hates for the same reasons. ¬†Except in his case, it also makes him look bad for refusing to treat the pain appropriately, or prescribe steroids for the relapses – neither of which he thinks are nearly as bad as I “claim” them to be.

Angry that even most of my family didn’t care enough to believe me, before or after finally getting the diagnosis.

Obviously I still have some anger around all this.¬† (Okay…a lot of lingering anger…ūüėÉ) I suspect I always will.

But, I am finally learning to accept the things that I cannot change or control.  In some cases, that means letting go of the very people who are supposed to love you unconditionally.

In my case, it meant facing the fact those family members who rejected me as soon as our mother died and my services as the the family caregiver, general lackey and whatever else was needed…then again rejected me when I was diagnosed, terrified, angry and feeling very much alone and unwanted… ¬†After several miserable months of trying to find out why they hated me, and did they ever truly love me…. ¬†Finally, I had to face the truth. ¬†No, they never did care. ¬†We were raised in the same house, by the same parents, but I truly was the little sister they never wanted.¬†

So I’m learning, albeit at the pace of a dead snail, to let them go. And as for my GP, I’ll just keep gritting my teeth while looking for a new one. The doctor shortage around here can’t last forever…I hope.

So in terms of things I can’t change or control, time crawls by.¬† So slowly that at times I’d dearly love to kick in the arse and scream, “MOVE, DAMN YOU, MOVE!”

But at other times, it seems to truly fly by so fast I that I can’t even catch sight of it.¬† In the last year I’ve had so many ups and downs, that at times I feel like a basketball being dribbled across the court of life!¬† The downs have been excrutiatingly slow and seem to drag on forever…but the highs, as brief, small and fleeting as they might seem, have been nothing less than wonderful!

In the last year, I’ve rediscovered a couple of true friends I had thought lost to time.¬† They, along with a couple newer, but not brand new, friendships, have helped kept me sane and made life worth fighting for.¬† I’ve finally¬†accepted the fact that I can’t go on pretending I will somehow get better one day, and must accept and use, physical aides if I’m to have any kind of life outside my bedroom walls.¬† (Now, if I could just talk the landlord into replacing the stairs with an escalator…ūüėČ)

Okay, so this has turned out far longer than I intended and upon re-reading it, much whinier than I’d hoped.¬† But hey, the good news is I’ve finally written a post of my own and not another re-blog!

I sincerely hope everyone had a great, safe and joyful holiday season and that you and yours are all doing well this new year!

Cheers!

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Sigh. MS sucks!

Yup, I’ve been away for a few days. ¬†Like the post title says, MS sucks. ¬†Big time.

I’ve actually been in the thick of a relapse for a couple of months, but as my GP refuses to treat anything to do with the MS, there isn’t much I could do about it. ¬†My first clue was when my left eye started acting up again a couple of months ago. ¬†Then a couple of weeks ago I woke up one day with horrendous vertigo that just would not go away.

I know I should have long since gone to the ER for help, but I’m so used to being told that’s not an appropriate place to seek treatments for relapses. I should see my GP, they tell me. ¬†Really? ¬†But he says no, call your neuro or go to the ER.

If you’ve ever had to see a specialist, you know it’s not like you can just call them up get an appointment in a few days. ¬†Months, maybe. ¬†Hell, where I’m at, you can’t even do that with your family physician. ¬†(If you’re lucky enough to even have one, that is. ¬†Your insurance or lack thereof, makes zero difference anymore. ¬†There simply aren’t enough of them practicing here, and the ones that do seem to actively avoid anyone with a complicated medical history.)

A couple of weeks ago I woke up with horrendous vertigo that would not go away. Walking was nearly impossible.  So, after a long scheduled test for another MS issue at the hospital this past Thursday, and after coming close to braining myself in the shower that morning, off went down the hall to the ER.

Fortunately, there was a neuro who works with mine on duty, and he soon had me hooked up to what ended up being a three-day course of high dose of IV steroids.  I can walk again.  Yay!

This is the first time anyone has bothered to treat a relapse, so as tiring and frustrating as going back and forth and waiting for hours to get plugged back in, I’m most happy to be walking again. ¬†You know, without falling and bashing into every wall.

Okay, that’s my TMI post of the week!

Cheers. ūüôā

Why I Blog…

Or more accurately, why I blog the way I do.

What with all the various reblogs on a wide range of topics that I’ve been checkering my blog with since I started a few months ago, some might wonder if I have an actual purpose in mind. ¬†A voice, so to speak.

To be honest, the only real goal I had when starting this blog, was to have a place that was mine.

A place that where I could speak my mind and not have to worry about what other people are going to say. That’s the beauty of being able to write anonymously, and to also having the power to approve or deny comments.

You see, I am fully aware the very people I don’t want to ever find out about this blog, may eventually do so.

And despite the fact that I have not yet, nor have intentions of ever doing so, slamming them in any way – or returning the “favour” of saying about them all the nasty things they have said, and in some cases, continue to say, about me – I cannot bring myself to stoop to their level. ¬†Though it is, make no mistake, bloody tempting at times!

I wanted a place where I could tell my story, and be heard, but not judged. ¬†In the short time I’ve been here, I’ve been welcomed and encouraged by so many wonderful people.

I hope I can be as supportive of them, as they have been to me. ¬†And I hope to support and encourage other new bloggers. ¬†Eventually, I hope I can gain the courage to tell my story. ¬†I’m not seeking sympathy, just compassion. And connection to other people.

I do have some wonderful “offline” friends. They don’t judge me or my multitude of health problems, and their unwavering support – especially in the last few years as my life has been more or less imploding around me, has meant the world to me – but they all have busy lives.

It’s hard to stay positive when your own family betrays you, cuts you out the minute you are no longer useful. ¬†It’s hard to stay positive when others – who you are powerless to completely cut out of your life – spend so much time calling you filthy names, gossiping about you and in general, do their level best to break up your marriage.

It’s hard to stay positive when you are in pain 24/7, year after year. ¬†Especially when despite have excellent medical coverage, you still can’t get the medical profession to care enough to help you.

As to the question of why I’ve been reblogging so many posts from other blogs, the answer is simple. ¬†I reblog posts that I feel need to be shared as widely as possibly.

Oh shit. ¬†Please pardon my French, but I’m having yet another on of “those” moments right bloody now. ¬†I’m going to do something I don’t normally do and actually hit the Publish button, rather that leave this the Drafts pile with all the others I’ve written, but never actually posted.

 

Mental Health Awareness Week: Why is awareness so important?

I came across this blog post earlier today. It struck a chord in me. Perhaps I’m too sensitive, or cynical, or both. It’s been my personal experience that those who really and truly need to “get it,” are the ones least likely to ever open their minds.

I struggle with depression. I don’t know – or care – what came first, my physical or mental health issues. What I do know, is that despite living in the Information Age, people are often willfully ignorant. Look, I don’t want or expect people to know the minutiae of the challenges I face each and every moment of every day. What I do want – and wish¬†I could expect – is for others to stop expecting that it’s okay to dump their beliefs and expectations on me.

If I do share with you that I’m having issues when outside my home, it’s generally just a courtesy on my part. It means I’m sharing in the hope of less judgement than I normally face. I don’t want people to think I’m intoxicated when my balance goes or my words start to slur, so if I’m out with folks I don’t know that well and I notice something is about to go wonky, I state then and there that I have MS. It is not – let me be very clear – an invitation or cue, for anyone to proceed peppering me with questions, sharing the so-called medical wisdom, or to pass judgement. It is not¬†a case of my pulling the sympathy card. I just want the people around me to know that I’m not plastered or high.

If my depression gets the better of me while out in public and you don’t live the expression on my face – or in my case, lack thereof – it does not give you, family, friend or stranger, the right to go off on me. Period. You don’t like the look in my face? ¬†Here’s a tip, don’t look!

p.s. ¬†And please,¬†stop¬†comparing me or my case to other people. ¬†Believe it or not, I am¬†fully aware that literally billions of people have a much, much harder life than I do. ¬†And I know that many of them still manage to put on a happy face and be an inspiration. ¬†Guess what? ¬†I am doing the best¬†I can. ¬†If that’s not good enough for you, then it’s your¬†problem. Not mine.

#BlackDogRunner

I‚Äôm not sure if you‚Äôre aware, but this week is Mental Health Awareness Week. For those who spend much time around me, this must sound rather exhausting. Barely a week goes by where I don‚Äôt moan about my symptoms, complain about stigma, or behave in a generally ‚Äėmental‚Äô way. Rather than another week of raising awareness, I suspect many of my friends would prefer a Mental Health Ignorance Week. Where I‚Äôd be induced into a state of quiet normalness, and the rest of the world could continue‚Ķ Well‚Ķ pretty much as normal.

"Ignorance is bliss" ‚ÄúIgnorance is bliss‚ÄĚ (This is one of my favourite pictures on the internet ‚Äď I don‚Äôt know the original source)

And ‚Äď if I‚Äôm fair ‚Äď I‚Äôd have sympathy. For a start, I know how boring¬†I can get when I feel motivated¬†to speak. It‚Äôs like a terrible¬†episode of Question Time, where the most annoying‚Ķ

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Other Multiple Sclerosis (MS) Resources

The Reality of Life with MSThis post is aimed at anyone who has life and family has been affected by Multiple Sclerosis (MS).  Like Cancer, MS is one of those diseases that affects the entire family and social circle of anyone afflicted with it – if, that isthe family and social circle choose to stick around.

However, unlike having cancer, there is no chance of a cure at this time.  That is not to say that I am in any way comparing MS to cancer.

Unfortunately, I’ve found through my own experience and through speaking with dozens of other MSers (as we call ourselves), that spouses, life partners, family and friends, turn away and drift out of the life of those who find themselves afflicted with this disease as soon it progresses to the point when they can no longer carry on as though they are not sick.  As in when they can’t fake it anymore.  The same is sadly true for people suffering with any number of other chronic illnesses, diseases, and disorders with mostly invisible symptoms.

Happily, while I have “lost” family and so-called friends over the years – both before and after finally being diagnosed in late 2012 – I have also been more fortunate than many in that my husband did not run away. Not even after it became apparent that despite how “good” I look, I truly could no longer do much of anything. And many other true friends have rallied behind me, accepting me as I am with no judgements or offensive “interrogations” about my mostly invisible symptoms.

Sadly though, my experience seems to be the exception, not the norm. At least not from the many, many other MSers I encountered or read about online.

There are a number of places online where you can go to seek information, assistance and support if you or a loved one has Multiple Sclerorsis.  I personally recommend that anyone affected by this incurable, progressive and often debilitating, neurological disease – be it the person with MS, or the spouse, child, sibling, parent, friend or any other person who loves someone afflicted with it – researches this monster of a disease extensively.

In terms of getting a diagnosis, do not take the word of any one doctor, seek second or third opinions whenever possible. And get those opinions from neurologists who specialize in the diagnosis and treatment of MS.  Do not rely on a family physician or general neurologists.  I am not in any way attempting to slam such highly trained and skilled individuals, but MS is best identified, understood and treated by those who specialize in it.  Remember there are a number of other diseases and conditions that can closely mimic MS, so it’s important to have the right tests and see the right doctors.

Another thing I cannot emphasize enough is that if you have MS, or the spouse/caregiver of someone with MS, is that you NEED to find support with others who truly understand exactly what you are going through.  If you can access support groups in your community through your local MS Society, local hospital or wherever, that’s great, go for it!  However, even if such groups are available, they generally meet at most, once a week, and there will be times you will have questions and/or need support, when no meeting is handy.

That’s where the wonderful world of the internet comes in.  I am a member of a number of online MS Communities and highly recommend all of them.  I have listed just a few of them below (as clickable links) and am a member of all of them.  If you wish to contact me at any of these communities, please feel free to and note that I use the same Username on all of them as I do on this blog – Wordsgood.

MS World Organization

An international MS site where you can find information, conversation and support. This site is great for not just people with MS, but also the partners, family and friends of anyone with MS.  (I’m a member.)

MultipleSclerosis.net ‚Äď A Health Union Community

This site that includes general information and resources, as well as a discussion board and some personal MS Specific Blogs hosted right one the site.  The one I follow closely is by Ashley Ringstaff.

National Multiple Sclerosis Society of Canada

This is the main Canadian website for MS, it contains information, resource links and a good, but sadly does not have a very active chat forum.

My MS Team

A social media place for people with MS to meet, chat and share info with each other.  While you can find great information and links to other resources at this site, it truly is a social media site targeted specifically to be an online peer support.  This the perfect place to go when you need to say whatever is on your mind, good, bad or ugly, and get the support you need, without having to worry about politely being told to suck it up (basically).  And in return, you can offer that same kind of support to others on their off days.

These are just a few of the many online sites where you can find MS information, other resources and support.

Opinions. Everyone has One.

You know what they say about opinions right?

For the most part, I’m a huge believer in free speech and will defend anyone’s right to have their own opinions.

But you know what‚Äôs not alright?¬† Cramming YOUR¬†opinion down other people‚Äôs throat.¬† Especially when you have no actual facts whatsoever to back up the ill-formed opinion you’re busy cramming down your target’s throat and regaling your loyal entourage with.

Lemme ‘splain,

From one standpoint, I am relieved to finally have a diagnosis.  But here’s the thing, I naively (apparently) thought that once I received it and let folks know, it would finally shut them up.  After all, how do you argue with scan results that show your brain closely resembles a slab of Swiss cheese?

And with not just one, but two neurologists who specialize in diagnosing and treating Multiple Sclerosis?

Well, apparently you can!

As it turns, I AM a lazy, whining, anti-social cow.  Or at least that’s what I’ve been told, repeatedly, by both portions of my family and that of my husband’s, acquaintances and even strangers.

Yes, leaving the workforce at the ripe old age of 32, was a well thought out career move.  Who needs a pension plan?  Eating cat food sounds in my golden years sounds like a great idea. Yummy!

I’ve had ever so much fun having my once busy work and personal life slowly shrink to almost nothing.  I love being in constant pain. I eat a bucket full of pills every day because I want to.  It’s a choice, really it is.

It‚Äôs been an absolute blast to watch my once spotless house transform into something you might see on an episode of Hoarders. I simply adore having to walk very slowly¬†like a little old lady (at 44), eyes to ground, carefully¬†scanning for stray pebbles or cracks in the concrete that might trip me up, resulting in yet another face plant or a cracked tail bone. ¬†After all, who needs speed? ¬†Don’t we all moan and whine about needing to slow down¬†and smell the roses, so to speak?

Descending stairs without firm railings to hang onto?¬† No problem, sliding down them on my ass or back makes me feel like an Olympic athlete!¬†Wheee…

And my absolute favourite thing of all?Having total strangers walk right up to me share their opinions with me!  And doing it loudly enough that the CSIS, the NSA or Paranoid Putin need not waste their resources trying to get intelligence on my latest nefarious plans.

Like I said, everyone has an opinion.

But if you’ve got¬†any (more) opinions¬†about me, my MS, or¬†anything¬†at all to do with my personal life – which includes my husband, our two daughters, and our pets – and it isn’t complimentary, then do me and the world, one small favour…KEEP THEM TO YOURSELF!

Go find yourself a life and stay out of everyone else’s business.

New Body Please

Excuse me sir, could you direct me to correct aisle for new bodies?

What’s that, you’re running low at the moment? Oh, just on the younger, hot looking models. That’s quite alright. I’d be more than happy for a female model that appears in her mid-forties, wrinkles, grey hairs, a few extra pounds and all. I just want one that works like any other relatively healthy mid-40s woman should.

No, I don’t particularly care about race. Sure, switching from a relatively colourless one like my current, broke down model, will take a bit of adjustment, but I’ll adapt. After all, my husband’s been telling me for over 20 years now that he loves me no matter what I look like!

Aisle three, you say? Splendid!

Pardon me? You also have a free Delivery Service and for just a small fee they’ll even assemble it for me? Wonderful!

Lead on, my good man, lead on.

Indecision, also known as fear…

Indecision, or more accurately fear, appears to be my new personal motto.

Should I actually post what I just spent two hours composing, or trash it like the previous 30 drafts? Will it come under fire because I dared to express my opinion, based on my personal experiences? Perhaps.

Should I take the plunge, so to speak, and try the newest medical advise I’ve received? ¬†After everything else has failed, can I afford to? ¬†I don’t know.

I am tired of hoping.  Tired of putting my faith into a system that ignored me until it was too late.  Yet, where else am I supposed to turn to?

Should I try, one last time, reaching out to those who abandoned me after I got too sick to be their lackey any longer? ¬†Family isn’t supposed to do that, yet most of mine did.

Fear controls me right now. ¬†It’s frozen me in my tracks and I don’t know which way to turn. ¬†I just don’t know.

I’m well aware that billions of people, literally, have it much harder than I do. ¬†But right now, at this moment in time, that knowledge isn’t really helping to inspire me.

I’m tired. ¬†I’m just too damn tired. ¬†I don’t¬†want to keep “fighting the good fight.”