"Where there is creativity, there is hope." ~ Donna Karan

Not so merry.

by - Saturday, December 28, 2013

Thank you Grumpy Cat, that's exactly how I feel.
It's not unusual for me to feel blue around Christmas and New Year's Eve. This time of year hasn't always been easy nor enjoyable since becoming ill. Chronic pain and fatigue aside, it's the emotional heartache that gets to me the most as Christmas is my "painaversary" (the anniversary of the onset of symptoms or diagnosis).
It was on Christmas day in 2006 that the minor symptoms I had experienced throughout that year turned into severe symptoms that hit me hard. All of a sudden I found myself with indescribable muscle pain and fatigue - the worst pain I had ever experienced in my life. I spent that Christmas day in agony getting around the house on a wheelie chair because walking was absurdly painful.
The pain and fatigue had me in bed a lot of the time wondering what was happening to my body. And a simple walk to the letter box became extremely difficult with my rapid decline in strength. All I wanted to do was sleep, and while my friends were out celebrating a new year that seemed full to the brim with excitement; looking forward to starting university and embracing thrilling career prospects - I slept through the live midnight fireworks broadcast that I wanted to watch because of bone deep exhaustion. And when the intense throbbing and aching pain woke me up I just couldn't muster the strength to lift my head off the pillow to turn off my tv.
I began what was supposed to be the most exciting year of my life hopping from doctor to doctor; fearing a rare cancer diagnosis while fighting to keep my place at university; only to have the persistent and debilitating pain force me to quit and put my dream career on hold.
Still to this day the pain and fatigue forces me to put my dream career on hold and it makes me sad. Especially around this time of year. Suddenly all the emotions and everything I felt on that Christmas day and New Year's comes flooding back.
And it hurts. It's still raw; the wounds haven't healed yet.
So this time of year brings up a lot off stuff for me and I feel like I've been put through the ringer; which means I'm not always feeling very merry. I'm reminded that despite my best efforts to get better, I'm still very unwell. I'm reminded that I've lost over half a decade to these illnesses and that I'm only a few years off losing a decade of my life - the years that are supposed to be the best years of my life. And I am not at peace with that yet. Before I know it I'll be 26, and my life is still at a standstill. This scares me.
I absolutely hate struggling from year to year, and here I am again starring down the barrel of another year with chronic pain which only seems to appear more and more incurable. I fight so hard to stay positive about each new year and I try to speak good things into existence, but despite how hard I work on this each year just gets crappier and crappier. I am not happy about this.
While friends and family have study and jobs to return to, I am reminded that I still don't have a degree or a job I can work, and it really gets me down. Because I want to work a crappy retail job, earn my own money and learn how to teach kindergarten kids or have a crack at beauty school. I want to so badly, it hurts.
I feel like I've got nothing to look forward to in the coming new year, and people keep asking me what I'm going to do next year and I just want to cry. Because apart from spending three weeks overseas, I don't have anything "fancy" to do, and I feel pathetic.
This time of year the things that I can't do are rubbed in my face ten fold, and thinking about my future makes me cranky. Particularly this year, because I still have a headache and facial pain.
I'm angry at God, I'm angry at doctors and I'm angry that I've had to spend thousands of dollars this year trying to find answers and good pain relief only to end up feeling worse, not better. I'm struggling to accept that I'll have to learn how to live with this horrible headache. I don't want to live with it, and I don't want to believe that there isn't a doctor out there who can help me.
I'm especially ticked off with doctors right now because I am convinced that this headache and facial pain is more than a simple case of Fibromyalgia, and no one is listening to me. I know my body better than anyone and yet I just keep getting palmed off with a handful of pills that come with a crap load of side effects, which eventually stop working. I've spent the entire year being treated like a ping pong ball - batted back and forth between doctors and specialists who tell me that there's nothing "wrong" with my jaw or face because my OPG (jaw and mouth x-ray) and sinus CT were clear.
Nothing wrong my arse. My jaw feels all wrong. It doesn't feel right and it's incredibly uncomfortable. I can't open my mouth as wide as I used to be able to, it's painful to yawn, sing, and sometimes eat. All my top teeth hurt, and my ears, eyes and nose throb. And I am very frustrated because not everything shows up on an x-ray, yet every single doctor I've seen (I've seen too many) doesn't think that an MRI is necessary because they are happily convinced that it's a Fibromyalgia thing. And this really bugs me because I can't shake this gut feeling that we've missed something, but what's a girl to do when she has so many "experts" who disagree?
I'm also upset about my very unsuccessful and ridiculously expensive splint therapy which I started three months ago. All this facial and jaw pain lead me to a specialised dentist who highly recommended wearing a splint at night because they thought all the pain I had was due to me grinding my teeth in my sleep. I struggled to believe that teeth grinding was the only issue causing my pain but went ahead and tried it anyway because, well, I kind of had to in order to get closer to a diagnosis and rule things out. I was told I had to give it a good three months to make a difference before an MRI was to be considered.
And here's what I'm really upset about: At my first month review I was told that if the splint was going to work it would have at least started to help a little bit. I saw no change but was told not to give up hope and persist with it for three months. Persist, I did. I had my three month review just a few days before Christmas and surprise, surprise, it has done nothing for my pain and yet I was told I had to continue with it for ANOTHER three months, despite being told that I would definitely see results now.
I'm now convinced that this specialised dentist is just in it for the money, and I really believe that they don't give a rat's arse about the pain I'm in. I had to pay them over a hundred dollars just so they could tell me that there is nothing they can do and advise me to just keep going with what I've been doing - popping pills that don't help that much and shoving a piece of plastic in my mouth that's a teeny bit uncomfortable at night. And I got charged for a splint adjustment when they didn't have to do anything because it was all perfectly fine. All they did was play around with my jaw (even though they're already convinced nothing is really wrong); making the pain much worse all just so it looked like they've "done" something so they can ease their conscience about taking my money.
And then they told me to have a merry Christmas!
I've been so annoyed with doctors telling me to "enjoy" my holiday and have a "Merry Christmas". I know they were just being polite; but I just felt like screaming: "JUST SHUT UP! I have a headache ALL THE TIME - there's nothing merry about it. I'm not enjoying life right now".
From my experiences this year I am convinced that the doctors I've seen don't really care and are just in it for the big pay check. This makes my blood boil. And I hate all the doctors I've seen because they don't even want to try to understand how bad this pain is for me. I know hate is a strong word, but this is how I feel. I don't trust doctors anymore, I hate going to appointments and I just feel stuck and so incredibly down about it all.
And I'm supposed to be merry, because it's the most wonderful time of the year. To be honest, I hated my Christmas. Not because of the people I spent it with but because I felt so bloomin' fatigued from pain meds.
And I hate that I hated Christmas. Because for some people, it was their last, and here I am feeling terribly unhappy. I know that things could be a lot worse, and I know that there is so much to be thankful for, so I beat myself up for feeling down because I should be happy, but I'm just not. And I'm sad that I'm sad because I want to be happy, but right now I just can't be.
This time of year my heart just sinks and the Christmas and New Year period becomes something just to survive. I realise just how unhappy I am; how fragile I still am. I realise that I'm still grieving and still healing. I realise that in order to be merry, I have to be sad for awhile.
And this gem of a quote that I discovered in my facebook news feed after getting halfway way through this post just affirmed to me that I needed to write this and press publish. Because I'm not the only one who is not feeling so merry.
“Stop minimizing and discounting your feelings. You have every right to feel the way you do. Your feelings may not always be logical, but they are always valid. Because if you feel something, then you feel it and it’s real to you. It’s not something you can ignore or wish away. It’s there, gnawing at you, tugging at your core, and in order to find peace, you have to give yourself permission to feel whatever it is you feel. You have to let go of what you've been told you “should” or “shouldn't” feel. You have to drown out the voices of people who try to shame you into silence. You have to listen to the sound of your own breathing and honor the truth inside you. Because despite what you may believe, you don’t need anyone’s validation or approval to feel what you feel. Your feelings are inherently right and true. They’re important and they matter — you matter — and it is more than okay to feel what you feel. Don’t let anyone, including yourself, convince you otherwise.” - Daniell Koepke
Ah, just what I needed to hear.
This Christmas has taught me that sadness (as much as I hate it) is absolutely necessary, because in writing through the hurt I've realised that I am stronger, more courageous and more independent than I have ever been in my life. And that indeed is something to celebrate and work at being merry about.

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