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!
Seeking My Lost Voice 