Does Time Fly By, or Crawl By?

RAMBLING ALERT!

I realized after writing this, that I rambled a bit…oops! 😀 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… 😳  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. 😉)

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…😃) 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…😉)

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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Multiple Sclerosis: The First Two Years.

Valariamsouza hits the ball clear out of the park describing her first two years after an MS diagnosis. She very clearly states what it feels like when your own body attacks itself…when it eats you from the inside out. And what it feels like to be utterly abandoned in your time of the most need.
I’ve already thanked her, but I’m going to say it again…THANK YOU, Valenciamsouza, for giving us and this horrible f***ing disease a voice!!!!

It's complicated.

What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.

I’m hungry.

I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.

Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me…

View original post 951 more words

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 – 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’s not alright?  Cramming YOUR opinion down other people’s 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’s 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.