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.

Temptations

The minute that someone explained to me that things like fear and doubt could be classified as temptations, a switch flipped in my brain somewhere. Temptations? *scoff* I know how to deal with temptations. You're looking at the girl who didn't have an ounce of chocolate for 6 months. The same girl who gave up alcohol for over 8 months. I've never had a problem with impulse buying or spending beyond my limits. I am a very budget minded person, and have no problems ignoring all of the afore mentioned temptations. Now I had the weapon with which to slay my inner demons.

What nobody tells you though, is how much energy it takes to stay strong. When you're dealing with a degenerative neural disease, you don't really have a whole lot of energy left after fighting your mind, body and emotions all day. I honestly don't know what people are talking about when they say I'm so strong. The person who snaps or lashes out because she's so damned sick and tired of being sick and tired does not seem very strong to me. I do try to keep my temper reigned in. The good news is that I happen to be a very self aware person, so I win more than I lose on that front.

As we come out of Christmas and my birthday, and therefore out of the only season I permit myself to gobble whatever food I like, I'll be eating smaller portions again and doing more exercise, in hopes that as I show my body who's boss, I'll also be able to work on controlling my fear and my temper.

The good news is that I have already noticed some progress on that front. I'm able to notice the temper tantrums as they build instead of after I've become a whirling dervish of fury. And I'm already noticing that my motivations in my everyday and personal life are no longer rooted in fear. I am able to look the fear in the face, acknowledge it, and then step around it. I can't even begin to explain how amazing that feels.

As far as diet and exercise goes, a recent visit to a Nutritionist has left me with some useful advice that I have already put into place. Let's see what my weigh in is like at the end of the month.

Dealing with Failure

One of my biggest pitfalls is learning to accept, deal with, and move past failure. We're talking anything as simple as forgetting to fill out a box on a piece of OW (Ontario Works) paperwork to not having a meal turn out just the way I wanted it to. Some people will read that and simply call me anal. Yes there are people out there who are that uptight and control freaky just because that's the way they are. 

And then there are people like me who have spent a good deal of their life being emotionally punished for the slightest failure. Did I mention that I grew up in a house that utilized corporeal punishment? My dad had the 'anything worth doing is worth doing right the first time' attitude. Failing was often not an option.

I have thankfully gotten to the point where I at least recognize that I am beating myself up for a perceived failure. I can shrug off a lingering depression that is fueling itself from those feelings. However, it often takes longer than it aught to get over the initial hump of ‘oh my god! What have I done! I've spoiled everything!’

I have very high expectations for myself. I am always striving for perfection. Good enough is never good enough. I drive myself crazy trying to always do better. I cannot see the things I have done as 'accomplishments'. I cannot see the things I have survived as evidence of my strength. It makes me crazy  that it takes so much effort just to get out of bed, just to put one foot in front of the other, that it costs me so much to move in the direction that I want to go in.

You cannot win at life. There is a Game Over screen, but there is no Victory screen.

When will I realize that? When will I stop kicking my ass because I haven't done enough? I am about to be 27 and I am sitting here railing, "What have I accomplished? " I have two baby sisters, one with two kids, and husband and a house, and the other with the same, less the kids. 

I wrote a children's story when I was 17. Published it when I was 19. But it was a self publication, and other than sell enough to break even, what the hell have I done with it? Nothing! It's sitting in my basement, collecting dust. I had all of these grand plans for selling them and writing more, and making a good deal of profit from it so that I could just work whatever minimum job I wanted to that made me happy. Now look at me. 

I hate that the only real progress I have made in the past five years has been psychological - not that that's anything to sneeze at, but come on! I was working my way up through the ranks of my last job, a job that I loved, was good at, and found fulfilling  And then I was forced to quit because of my health. I cannot even get a part time job because I can never tell when I'm going to be completely unavailable, nor for how long. It's simply not fair to any prospective employers. 

Apparently a big reason that I have such a hard time dealing with failure is that I cannot accept my limitations. I have no problem attributing this to pride. I seem to have mastered the art of setting it aside in such instances as accepting OW, accepting a ride in a wheel chair when it becomes needful, or taking my cane with me almost everywhere that I go. And yet...

I strive be be completely self sufficient. Meanwhile, life keeps throwing me curve balls that make that completely impossible. I am dependent on the pills, the caffeine, OW, the people around me... I wish that these things could be wants instead of needs. I have so few wants, and way too many needs. I attempt to strive for one thing, and up crop all of these needs. It certainly adds an emphasis to Special Needs.

I have to keep asking myself if I'm doing the right thing. It's sort of like the insanity test. If I can ask if I'm crazy, then everything is fine. 

So...Am I crazy?

Weapons of Self Destruction

Here is a perfect example of how we make tools into weapons.

I was having an online conversation with a friend about maybe going to the Royal Ontario Museum, the Science Center, or even to the Toronto Zoo. These were fun and exciting things that I had never experienced before. During this conversation, I managed to upset my roommate whom I was hanging out with at the time. I then decided that I didn't want to do the fun and exciting things.

I have come far enough in my understanding of myself to realize that I was brainwashing myself, but couldn't figure out why it was so easy and so instantaneous, nor why I was even doing it.

So I hashed it out. It didn't take long to discover that the reason I was doing it was because I felt that I'd done wrong by upsetting my friend; I was punishing myself. I had decided that I didn't deserve the 'treat' of these excursions.

As for the ease in which I was able to make the mental and emotional shift; I have always been a very willful person. Call it stubborn  call it determined, call it self disciplined. I can walk down the chocolate bar aisle and just keep walking. I can be offered my favourite sweet or savory treat and decline with grace, at times, even without hesitancy. I was using those same strengths to convince myself that I didn't want to go. Which then meant that there was no feeling of loss or regret, but this is counter intuitive to self punishment. There should be some sense of loss in any punishment based on denial of a desired thing.

Conclusion: I'm an idiot. But a very clever one.

And this is how we turn tools into weapons of self destruction.

Why do I feel this way? Let's dive a little deeper into my psyche.

I've been to the Toronto Zoo, but not since I was a wee lass. I had never thought of going to the ROM nor the Science Center  at least not since I was a kid, and talked about going with Dad. That's very much a me and Dad thing.

Then there's my roommate, who covets all of my experiences. He wants to be the one to share them with me. This applies to others as well, not just me. He genuinely enjoys a shared experience with anyone. He's an experience junkie. Personally, I think he's just trying to power lvl ;)

Okay, so those are just sentimental excuses. Let's try another angle.

I don't know how to feel about being spoiled in general. It's difficult for me to accept gifts even at Christmas and my Birthday. In fact, when I had a birthday party with my new London friends, I insisted on no physical gifts; instead, I demanded a performance of sorts from each one (they are all talented performers of some sort).

It's not that I don't want the gifts...I just mange to convince myself that I don't deserve them. Someone told me recently, that its not about the feelings of the person receiving the gift, but about the feelings of the person doing the giving and that, I can relate to. I'm a really good gift giver. I have the ability to find that one thing that speaks to a person.

A friend tried to tell me once that gifts were often selfish in nature. That we give gifts based on our likes and wants. I'm not like that. I never have been. I find the thing that screams a person's name. And often, its not something that I would necessarily like or want. And it feels so good to watch the person open it, examine it, realize what it is and then get that 'Oh My God, this is amazing!' look on their face.

I guess for me the selfish part is wanting that glow. That feeling is for me.

With that in mind, I should be able to receive any gift offered me, with grace, be it a new T-shirt, a spangy new necklace, or an adventure amongst the various hot spots in whatever city I happen to be gracing with my presence, with the knowledge that it is making someone else happy. I am nothing, if not a people pleaser.

My new mission: use these tools to make progress instead of turning them around on myself and busting up the new path I've laid.

Talk It Out

I received a copy of "Bared to You" for Christmas. It was very well written, especially when compared to the "Shades of Grey" books. I'd like to ask E.L. James' editor what they were thinking when they let it go to press so raw. The acknowledgements section of Bared actually had me in tears. Her editor has her own paragraph, and it made me think of the work I do as an editor, and the editing that my friends do for me.

I wanted to devour the book, but I had to break it up into chunks. I found myself growing too emotional at times. It just struck so many chords. And of all of the gifts that I got this year, I think it has been the most useful. I feel like it gave me the tool I needed to fix some of what is wrong with me.

Without any spoilers, let me just say that the book talks about therapy, and sort of a 12 step program for people who have undergone emotional abuse. I recognized that one of the things that I do, that I hate doing, but can never seem to stop myself in the middle of, is because I've been Triggered. And now, I can see when I'm doing it, or about to do it, take an emotional step back, figure out what set me off, and deal with it instead of blowing everything out of proportions and just causing more problems.

Now I've got a choice to make.

If a piece of fiction that briefly mentions a therapy technique can be such a life changing tool, what sort of progress could I make if I actually committed myself to seeking out therapy?

This is a frightening thought on so very many levels. It means admitting that I need professional help. It means possibly being told that there is more wrong with me than I like to acknowledge. It means the possibility of hearing things that I'd really rather not hear. A therapist isn't going to hold back the truth that I need to hear. That's sort of the point. And a therapist is going to have the  skill set to make me face any realizations instead of just filing them away in the "Nope, it never happened" or the "Nope, that's not why" folders of my psyche.

This also would be flying in the face of my severe trust issues. I've had doctors do wrong by be in the past. And I've got enough wrong with my internal wiring already, that I hesitate to let just anyone start tinkering in there. But am I really ready to let such an opportunity pass just because I'm scared of what might go wrong? Ever since this while ride began, I keep promising myself that I will not live in fear. I guess that means that I've already made my decision. It's just a matter of acting on it.

*deep breath*

Wish me luck.

Take A Ride

I took my first serious ride in a wheel chair a few days ago. It took a bit of convincing (read, bullying) to get me to shut up and sit down, but Ikea is just too big of a place to be able to wander around under my own power. Though it wasn't until my vision started going wonky and I couldn't take more than a few steps without nearly falling over that I finally agreed to park myself on a bench until my friend returned with the chair.

Though after that, it really was an adventure. I'll admit to feeling a little bit childish, but only in the good, someone is taking complete care of me, sort of way. I suppose it was reminiscent of my days being pushed around in a stroller or a shopping cart. The latter would have been more appropriate here, as my lap soon became piled with stuff.

All in all, it was not a bad experience. I think that the next time I come here, I'll skip trying to act like Super Woman and just start in the chair. We'll need to make sure there are three of us. One person to push me, and one to push the cart ;)

I will admit that the thought of things like a cane (which I now use about half the time that I am out and about) and a wheelchair frightens me. I dislike being dependent on people and things. Perhaps this comes from growing up with parents and other family members who have always encouraged me to stand on my own two feet. Perhaps its tainted by the time that I spent being totally dependent on people whom I then had to cut ties with. Either way, it scares the hell out of me.

I have been taking prescription pain killers for about two years, now. Even that is a dependency that I am hesitant to lean on. Granted that if I stopped taking the first of three, I would be completely bed ridden, and puking my guts out from the pain, unable to form a coherent thought past the fog of searing, throbbing pain. But the other two, I only have to take if the pain levels spike to where the first is no longer quite enough. All three are non narcotic. All three have side effects preferable to the symptoms. And yet...

I have to constantly remind myself, and be reminded by those around me, that it's okay to take them when I need them. That it's stupid, and even a little childish, not to. Even a little masochistic.

So I put on my big girl pants, and I take the pills when my hands start to shake with the tell tale sign that I'm in more pain than my body can handle. I make a pot of tea and accept that I am going to drink at least half of it just to keep up the energy it takes to sweep the floors and wash the dishes. I take my cane when I leave the house if there's the slightest hint of numbness or weakness in my limbs. And I come to peace with the fact that it's possible that I may have to start planning to make this place wheelchair accessible.

Declination

I have noticed that as my health declines, and more and more stress from both my health and just life in general, are heaped on me, I have been slipping out of the Happy Place that I have always been able to cling to, even in the darkest times of my life. I have become a very negative person, and even difficult to be around. This is not something that people have had to tell me, just something that I have noticed myself, and have had confirmed by others.

I need to learn to let things go. Things that never would have bothered me so much a couple of years ago have begun to drive me crazy. A good deal of this, I think, comes from being mostly house ridden, if not bed ridden, a lot of the time.

So I've been working on:

 -trying to be less negative, or to at least catch myself in the act and cease and desist in a more timely fashion instead of going on and on

-making social appointments to get out of the house

-letting go of the little things

-balancing my diet with my steady decline in physical activity (I am below 160 for the first time in over 2 years!)

-balancing feeling fulfilled with feeling overwhelmed (harder than it sounds)

-using creative outlets to boost my mood (singing, writing, crafting, etc.,)

I've already made some headway over the holidays, noticing that my dark cloud is lifting, and that I am significantly easier to live with. Let's see if I can keep up the good work.