Spoons

Until recently, I often had a hard time explaining to my friends and family what it is like to be Sick. I have tried describing symptoms, I have tried directing them to the Wiki page, I have tried describing a typical Week In The Life of Me. Sometimes they sort of get it, but only for a little while. Often times, they over simplify it, and just tell me I need to be eating better, and/or exercising more. Often times they take it to the opposite extreme and tell me I should be doing less, and coddling myself more.

Then I stumbled across the Spoon Theory. Suddenly, I had at my disposal, the prefect metaphor to explain to people what it's like! Variants and all! I do not know why I, of all people, couldn't think of something like this on my own. I am a writer, for heaven's sakes! Metaphors are how I paraphrase what others are telling me to make sure that I've understood what they've said, and very often, I will use them to clarify my own statements. *facepalm* Nonetheless, I've got it now.

Here's the simplified version:

When I wake up in the morning, I have a pocket full of Energy Currency (in this case, the writer chose spoons, as it was what was at hand). I have only this finite amount of Spoons for the day, and each day, the starting amount varies. So I have to very carefully balance out how many Spoons I have, with what I want to get done that day. If I over spend, I have to be very aware that I am now borrowing against tomorrow, which almost always comes with interest. Meaning that if I over do it today, tomorrow, I'm going to be on my ass. Which, if you think about it, sounds more like what your grandparents might say than a 27 year old. Fitting, since half the time I feel like I'm 80 years old.

The thing to really be aware of in this metaphor, is that everything costs Spoons. Showering, one spoon. Shaving, one spoon. Getting dressed, one spoon. Making breakfast, one spoon (minimum). There are days that I simply do not shave, or wear anything more complicated than Jammies, because I simply do not have the energy.

Everyday life is a constant battle of Quantity vs. Quality. Some days I get all dressed up, just to sit around the house, because it helps battle the depression.Other days, I push through a laundry list of chores, because either my sanity requires it, or I'm trying to wear myself out to combat the insomnia. Sometimes it works, and sometimes I end up puking my guts up from the pain of having done too much.

The few times that I do exercise instead of housework (as if that weren't enough workout for 2 people!), it feels good in the moment. There are some things that I should be doing on a regular basis, like stretching (see bottom of article for diagram), and if I knew what was good for me, I'd get back into my Fitocracy account. I still have to keep everything in balance, though. "Too much of a good thing, is no longer a good thing." In this case, too much working out is worse for me than none at all.

Painkillers, caffeine, and naps help to reclaim Spoons, sometimes, but not always. Often times, these measures simply keep me stable enough to sit and relax without bleeding away excess Spoons from the pain. The biggest consumer of Spoons? Stress. I'm getting better at emotional control in the face of adversity, but a worrier will always be a worrier, to some degree, and I'm the eldest sister of three, and a mother in training. Trust me when I say that I am a professional level worrier :P Add to that the potential volatility of a French/Scottish temper, and we've got a very explosive combination. But, baby steps. I am getting better at controlling it all, little by little. If not for my own sanity, and the sanity of those around me, then for my own health.  

Educate Yourself

"A little knowledge is a dangerous thing." ~Alexander Pope

Today, I went to the Urgent Care Centre, on the advise of TeleHealth and my friends and family, reguarding a bee sting.

Forgetting the fact that he put pen on my arm without asking, nor explaining why, when I mentioned that I have Fibro, the Dr. then took it upon himself to tell me that Fibromyalgia is not a disease that is the purview of a neurologist, but that I should be seeing a rheumatologist. That cognitive dysfunction is not a symptom of Fibro, and if I am experiencing that, it must be something else.

Since when does a General Practitioner, working out of urgent care, know enough about a disease that most specialists are still struggling to understand? Thankfully, I am a well educated patient, and knew enough not to panic and think that my specialists have been jerking me around for two years.

Fibro fog is a real thing. It manifests itself in dozens of ways, and cognitive dysfunction is part of that.

I have done my research (as has my own GP), and I have seen a rheumatologist, (which, by the way, is a bone doctor.  My pain is not bone specific), but thank you very much for your uneducated opinion.

People wonder why I hate most doctors, and why I hate going to urgent care or the ER. This, is a prime example of why.

Know thyself, and know thy limitations. Do not speak on a topic you know nothing about, casually, to a patient you have no intention of further educating.

And to all of those patients, out there, please remember that an ER or UCC Doctor is not a specialist, and they do not have your entire medical chart to look at when addressing the problem of the moment. Do not take their word as Gospel just because they are wearing scrubs -.-

A Reminder

I’m more than a little spoiled. And sometime ago, I would have been railing at it, telling myself that I don't deserve it, and waiting for the other shoe to drop.

I have a life full of wonderful friends who would do anything to make my life a little easier, a little brighter. Many of whom have proven that.

I’ve had someone show up to clean all three bathrooms for me. The only payment demanded, that I keep him company while he works. I’ve had people change their plans to suit my poor health (movie here instead of movie there), and cutting the evening short to drop me off downtown to deal with paperwork afterwards (don’t worry, I got a ride home from another friend). I have a friend who routinely takes me swimming because it is the only exercise that I can do that fits all of the limitations of my illness that still gives me the benefits that I need.

I also have a hand full of roommates who help me when I need something lifted or carried. I am about to have one more who will also be helping me with more of the nitty gritty day to day stuff. I sort of feel like the principal of a boarding school who is at long last getting her vice principal :P

Outside of that, I have one friend who takes me to the movies on a semi regular basis, and buys me things like awesome necklaces and geek t-shirts. Another friend that keeps me in supply of video games, either on Steam, or for the X-Box.

And then there are the plethora of people who constantly remind me that when I am having a rough day, or a rough moment (okay, rougher than average), to call, anytime. That if I need someone to vent at, or be comforted by, that I can do that. Anytime. Day or night.

And you know what? They all tell me that it’s their pleasure. That’s it’s no more than I deserve. And you know what? I am finally beginning to believe them...

I often stop and ask myself, "What have I done to deserve such amazing people in my life?" I myself am such an abrasive person! But I have come to accept that I am the good kind of abrasive. I am that sanding belt that turns the raw stones into polished gems. I am good for the people in my life. I give as much (okay, way more) than I take from them. I add to their lives in a way that the majority of people are afraid to do. I am (at least on the surface) a fearless friend.

It still boggles my mind that the things that I do without even thinking about it, like telling someone if something they are doing is annoying me, are things that are very nearly considered social faux pas. How many times do I have to tell you people! It’s not what you say, it is how you say it! I don’t talk down to someone when I point out something that they are doing ‘wrong’ that may be unintentional. I give them gentle encouragement, and advice if they should happen to want to change. I’m not in the business of forcing people to be other than what they are, or what they want to be.

I am, however, in the business of helping people to be better people. I guess that is the bottom line of what a Life Coach is. Even if I’m not doing it as a 9-5 job, I am still helping a lot of people in small ways. Some people, more in depth than others. They may not pay me in cash, or those that do, may not pay full rates, but I get what I need from them. Be it love, kindness, a ride somewhere, a couch to crash on when I’m away from home, or some bolstering words when I’m flagging, emotionally. 

Friendship, when done right, is one of the most beautiful forms of symbiosis imaginable.

Life Changers: 17th B-Day

You know that voice in the back of your head, the one that sounds like your <insert authority figure here>, saying "You're going to regret that when you're older"? Ya, well, there was at least once in my life that I wish I had listened to that voice.

When I turned 17, my friends and I celebrated the same way we had been since I was 15. We loaded up into a car and went down the road to my Grandmother's to go sledding in the gullies at the edge of her property. This seems like the obvious thing to do when your birthday is in the dead of winter and you live in the Middle of Nowhere, Northern Ontario. This year, things were a little different. There was a good foot of fresh powder! So we did what any fun loving group of teens would do.

My boyfriend at the time was six foot two and built like a line backer. So he took turns lifting us over his head and throwing us down the hill into the fresh powder. It seemed like a good idea at the time. It may even have been my idea. Well, when it came for my turn, something happened. His foot found a gopher hole and it through off my trajectory. I landed on the flat of my shoulders, crumpling me like a tin can. I was in a fair amount of pain, and I couldn't breathe. I'm not even sure I managed to uncrumple myself right away. I know I couldn't even lift my hand to let them know I was okay.

They came scurrying down the embankment, and by the time they got to me, I was able to move around. I even got up and walked back up the hill, and continued to sled for the rest of the afternoon. I felt fine.

But today, among other problems, I've got a mysterious back pain that can only be managed with some of the most powerful painkillers this side of narcotics. I can't help but think back to that day, and hear my mother's voice in my head. "You're going to regret that when you're older..."

Fiction

Fiction is always as escape from reality. From OUR OWN reality. Good writers write good stories. Great writers create great characters. And truly inspired writers write inspired stories with inspired characters in inspired universes. An author's chosen genre should not dictate the intelligence nor age of their target audience any more than their favourite colour should dictate how much they are paid per book. Books are for everyone. Of every age. Of every nationality. Of every IQ percentile. Of every ethnicity, spirituality and sexual orientation. You don't even have to be literate; that's what audio books are for...

I know a young Christian girl who isn't a fan of Fantasy. She prefers what she calls depression fiction. The kind of stuff that involves the capture and torture and deprivation of innocents. I was shocked. I asked her, cautiously, why? "Because you have hope. You know something good is coming" Her response floored me. But I could relate.

It was a combination of Christopher Pike's 'Remember Me' series and Marion Zimmer Bradley's 'Avalon' series that got me thinking about my faith and spirituality. Having said that, they are also some of my favourite escapism reading.

There are books that I simply cannot read when I am feeling low. As well written as they are, they are simply too moving. They hit too close to home, and I end up setting the book down with shaking hands, and feeling like I may have a panic attack. Having said that, when in the right mindset, I can read those same books, and come away with a different outlook on my situation, and often, a new tool to try to deal with whatever it is in my life that this particular book is speaking to. On that note, I highly recommend the Crossfire series by Silvia Day for anyone who is struggling with emotional scaring, and may be afraid to take the step of seeing a psychologist.

There are other books that I have read so many times that I can practically recite the chapters. The characters feel like old friends. These are the books that I turn to when I am feeling ill, or homesick, or just overwhelmed.  Laurell K. Hamilton's, Kiss of Shadows is one such.

I have an entire bookshelf full of books that I've purchased (used) or been given that I haven't even gotten around to reading yet. Forgetting the list of books recommended by friends. There are days that, I will admit, I feel a little overwhelmed by the sheer number of them. Gone are the days when I spend 8 hours a day reading. but I also know that if I ever feel the urge to write, but can't quite tap into my creative juices, all I need do is pick any 5 books at random, start skim reading, and then wait for my brain to start tickling.

People often ask me where I get my writing ideas. The truth is, that I'm a worry wart. I have the unfortunate knack for what-if'ing any scenario. In life, this can lead to anxiety, headaches, and even ulcers. I try to curb that particular knack into a tool for writing. I will mull over someone else's story idea, and "What if" it until you can no longer recognize my starting point. 

Fiction is also the scariest thing to write. Non fiction is easy. It's either an opinion -no matter if it's based on researched facts- or just life stuff. Non fiction is something I do for myself, and hope that maybe someone else might like it, and maybe even learn from it. Fiction is something I write first for me, but always with the knowledge that there is an audience. An audience full of editors, critiques, and much better authors than myself. I'll stop there, before I turn this into a post on Writing.

It's Not Lupus!

I meant to type this up when it happened, but to be honest, I'm glad that I waited for the reality of it to sink in.

In February, I had a follow up appointment with my neurologist after yet another test. First off, the test was on Hallowe'en. I'm not greatly pleased that it took me 3 months to get a follow up appointment. Having said that, it's the nature of the beast. It also helps that my neurologist is one of the best health professionals that I've ever had to interact with.

So, multiple sclerosis. It was something that my GP mentioned might explain my symptoms, even though it was rare in people my age. It was removed from the list of suspects, early on. However, when my symptoms started getting worse, it had to get added back to the list.

This most recent test was able to take it off of the list again. This news should have left me jumping for joy. I'm sure part of the reason it didn't is that my neurologist's clinic style greatly resembles an avalanche, meaning that I didn't really have time to think about it. I'm equally sure that part of it was simply shock. I have spent months getting used to the idea that I may end up in a wheel chair, or worse. *shudders at the thought of adult diapers or a colostomy bag* That I may have to start explaining to all of my very supportive friends, that Yes, I know that there are alternative treatments, but I am also a single, unemployed 27 year old. I cannot afford treatments that are not covered by OHIP. I can barely afford the medications that I'm taking now, thanks anyway. And no, I do not have the energy to apply for grants and enter test trials and all that sort of thing. This is where we get back to the idea of Quality vs Quantity. Yes, my health is kicking my ass, but I'd prefer to enjoy my good days doing what I want to do, not spending all day researching and making phone calls and writing emails to Doctors and clinical programs, and my local MP (Gee, you'd almost think I've gone over this a time or two).


So now you're wondering what I was left wondering. If it's not MS, what is it?

The popular theory right now is Fibromyalgia. I thought this was a disease which I knew something about, having had a Mother In Law who had been diagnosed with it. Turns out it's a lot more complicated than I thought. There are some who believe it to be a mind over matter sort of thing. People hear the term Phantom Pain and assume that it's a pain one feels because one thinks  there is pain. Not true.

Fibro patients show visual signs on brain scans that there is something wrong. Tests just cannot confirm the cause. Hence, phantom. Symptoms range from sleep disorders, to mood swings, to cognitive disruptions. To be perfectly honest, I'm sort of relieved to have a possible diagnosis that covers so many of my symptoms! Granted that confirming the diagnosis will likely mean several dozen more tests, as it is a diagnosis of exclusion. Think Dr House. Differential diagnosis. We test for everything until there is only one possibility left. And no, it's not Lupus :P While I am still mildly frustrated at the lack of a concrete answer, I am beyond relieved to be told that I will not in fact have to endure a needle being bored into my spine, and will likely not be suffering from degenerative symptoms. I did eventually have a good cry, and that helped it all sink in. But I spent at least a week explaining the results to everyone before it really sunk in what that meant for me. Having watched both of my grandparents fade away from cancer, and having several distant relations who have suffered from MS, my level of relief simply cannot be expressed with mere words.

Now comes the renewed efforts of balancing my life with my illness, and my pain with the drugs. The fold away cane that my Uncle bought for me has certainly been a Blessing, but I'm still thinking about investing in a wheelchair. There are still days that I just cannot move under my own power, and I don't want to be a hermit! I have enough wonderful friends that I'd never be at a loss for someone to escort me about in my throne ;) I've recently survived my first overnight convention, and am already making plans for a much bigger one next summer. More immediate plans include a week long visit in Hamilton for St Patrick's day, culminating in yet another brain scan, and a trip up North to visit my folks at the end of summer. Looking forward to seeing everyone, especially the babies :) I'm not going to let this condition keep me from living my life to the fullest.

Naïvety

NOTE: This is something that I wrote some time ago as sort of a poetic rant. Here seemed like a good place to share it.

It is the gentlest of us, the kindest, the most naïve, the generous, those with the best of intentions, who end up battered and bruised. We are the compassionate ones; the empathic. We look at the world around us and attempt to filter out the negativity. We strive to see the good in everyone, the silver lining to every situation. We walk around in a constant state of optimism, always quick with a smile for each stranger we pass in the street, and to step lively to open a door for an elder. 

Suspicion is not something that comes naturally to us. It takes several incidents for us to even begin to bring our guard up. And so we don't notice the deception, we never see it coming. We wake up one day and look around and wonder how we could have been so blind, so trusting, so oblivious. And we attempt to rebuild the shambles of our lives, weaving together the shards of our psyche with stray wisps of sanity. And suddenly we find ourselves hiding behind layers of masks, our former selves peering hesitantly around the edges. And so we bear the scars of Humanity and slough off the dead tissue to reveal new skin with the shedding of each mask.  

But eventually, let the last of them fall away again; we have to. The day we stop having Faith in Humanity will be the day we climb upon the funeral pyre.