The little things

I posted on my status earlier that today was a good day. It was. 

I left the house.

I engaged with others in public.

I laughed and ate and chatted with family.

I even washed my hair.

It was a good day. 

You see, each of these things may seem minor to so many people.

I guess in the bigger scheme of things, they are. 

But

I don't know what tomorrow or the next day will be like.

 One, or all of those things could be impossible for me to do without triggering an attack. 

On a bad day...

It's the inability to do my hair because it's too painful.

The inability to eat.

The inability to hold a conversation for any period of time without pain.

It's the little things.

The little things become the things that allow or block me from living the life I want. The life I expected to have right now. 

The trick has become to celebrate when they form part of a good day, because there's no positive to engage with it when they're part of a bad day.

The little things. 

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. 

No Hope in sight

Hope
A few years ago one of the recurring statements in TN groups was that we should have hope.
Hold
On
Pain
Ends

I have always known that my pain would get worse. I have always known that there is no cure. As the medication options failed, I had hope when surgical intervention was a possibility.

I had hope.

What happens when that hope is gone? How do you motivate yourself to just live with it. To know that your independence is, and will continue to, slowly being leeched from your existence.  That, just as the hours of functionality in the day reduce, so does your acceptance of the fact that this is life.

That's the thing about pain. It is a very personal experience.  An assault on your being in a way others cannot necessarily see or understand.  Yes, they see the effects. They see and empathise with you from their perspective.  It's all they can do.
It doesn't change the fact that hope of relief is only possible when you die.

So you try to live in a world without hope because you don't want to die.

And that is that.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. 

I want to get off this ride.....

I love amusement parks. Rollercoasters are my favourite.  There is one ride though, the big swinging ship, that I cannot handle and will avoid ever riding again.  Somehow, a childhood experience with a swing has meant that no matter how much of an adrenaline junkie I could, or would want to be, I cannot enjoy that ride. I've tried it once or twice, but no matter what, I have the instinctive need to get off as soon as the first swing is done. 

That's kind of how I feel right now. I want off this ride NOW!

When my symptoms increased a few years ago, the endless doctor visits and multiple medications were the only way to try and find a management plan. As each medication was eliminated as a possible treatment,  I felt more and more trapped. Like being on a ride with no way to get off. 

It has been 3 years since my last interaction with my medical team. Part of that was me consciously deciding to try and find a way to live. A bigger part, as I said in my previous post,  was me avoiding yet another "there is nothing we can do" visit. 

Yesterday,  as unhelpful as it sounds, the fact that a top Pain specialist said "there really is no one, including me, who knows how to help you or give a hope of a cure"; was what I needed and had to hear. It sucks. I can't truly explain how I feel about it, except to say that the approach of "try this because you have nothing to lose" with a new medication and one we have already tried, feels like being on that damn ship ride at the amusement park. 

I am not amused though. Not in the least. 

The one medication that we tried 5 years ago, is the first level treatment in clinical protocols for TN and made me feel like I was constantly tipsy, and not in a good way. It was the start of me losing my independence.  My ability to drive. My ability to work every day.  It is and was the hardest part of living with chronic pain.  Losing my independence.  I am not ready for that again.  I don't want to do it. I don't have a choice. 

So here I sit. On a ride I shouldn't have to endure. Unlike one I paid and stood in line to board, this one is something my body and fate decided I should get on and we go back and forth until I feel like jumping off mid-ride might be better than just enduring the fear and anguish of staying safely in my seat. 

Who's afraid of the big, bad..... Doctor?

It has been a while since I have written here. I have been trying,  and generally succeeded, to focus on living what is my life regardless of what my pain level is on a daily basis. The elephant has been it's unpredictable self as always,  but I am determined to deal with it and live the hell out of my life for as long as I am able to. I guess I reached a point of acceptance, which facilitated a kind of peace. 

I guess you're able to deduce that this has not been enough to truly tame the pain or the turmoil of living in pain, if I am writing here again.  It sucks. I am pissed off and have no other way to describe how pissed off I am than to pour it out in words right here. So if you're reading and continue to read this, thank you. 

In all this time, the 3 doctors who have understood and helped me most, have been like a beacon in a sea of disbelief and health professionals who felt the need to tell me that I was imagining my pain or that my obesity was largely responsible for it. Even those 3, in kindness, enquired about my obesity and recommended that I attempt to deal with that while also treating my pain.

I have done that. I have lost a ridiculous amount of weight, begun exercising and generally improved my mental and physical health over the past 15 months. So the fact that I am now a day away from an appointment I need but didn't want to make is infuriating.  The anger is real. I am angry that I have done all I can do. Physically,  mentally and with medication prescribed over time.

I have done the work. I am studying, exercising,  working and living like a "normal" 38 year old. But I can't continue to lie to myself and ignore the fact that once again,  my TN has changed in intensity or frequency and it hurts. Not just physically,  but emotionally and mentally.  For the longest time, I have had people asking when my next appointment is, when they see or hear that my pain is at an unbearable level. I generally deflect. Why? I don't want to tell them that I haven't been to a Dr for my pain in over 2 years. I don't want to tell them that I am afraid to go because of the "what if" of it all. 

What if there is literally nothing left to do?

What if there is a new medication but it puts me back in the dependent state I was in 4 years ago?

What if there is a progression of damage to my nerve and this is the start of a decline in daily function that I don't recover from.

What if there's no explanation for the new symptoms and no answers to process? 

What if my work to be respected in my job is now affected by those who would easily take this as an opportunity to point out why I don't deserve to be where I have worked so freaking hard to be?

You see, when you live with pain on a daily basis. The moment when it changes or increases is a scary thing. It is all those questions I listed above that makes the call to your compassionate Dr, the even more scarier thing to do.

So here I sit. Afraid of the pain becoming a focus in my life again and more afraid that my delayed decision to seek help has put me in a position where that will happen in any case. 

Here's to wishing all the warriors a day where the elephant is kind, or at least doesn't use its tusks to maim.

Mommy trumps all

So after my blog post the other day explaining my current mood and physical state, I thought it may be useful to share another not-so-fun fact about living with chronic pain.

As a mommy and wife, one of the most difficult parts of being in pain is seeing how it affects your family. They are truly the only ones who see every part of this journey, doesn't matter how close you are to anyone else. If they do not live with You, the person next to you right now will never know what 2am agony is like. 

Don't get me wrong. It's not miserable-central in our homes all the time. We have love and laughter often. We also have had to figure out how to live and continue chasing our individual and family dreams regardless.

The sad part is, it does affect how we do that. Something as simple as having your youngest start too many sentences with: "Mommy, one day if you're feeling a little better can you please..." ; is devastating.  Knowing how it affects her, with her empath-personality, is would destroying.

So what has me thinking about This?
I am in pain. Attacks and the ear infection are driving me crazy. At the same time my husband is hard at work writing a paper for his last module in the diploma he is working towards and the youngest in out house has come down with cold/flu. So today, being a mommy is all I need to do. Hiding in the bathroom or another room to try and breathe through pain, only to go back out to be with her. It's what we do. It's all we can do. We live our lives with and through pain. In my case, mommy trumps all. Every. Single. Time.

Big old meanie

I haven't written here in ages. The reasons are multi-faceted. From wanting to focus on living, having a much more manageable pain level for a few months after the last surgery, to using Facebook more often to post about my pain. Tonight I feel like I need to write though. I'm such an irritable person the past few weeks that I'm actually irritated with my own irritability.
A quick catch up. The pain is back with a bang. About 10 months of bearable daily pain and minimal flair ups. For the past two months the 3rd branch has been going haywire. Every freaking day. Sometimes it's a few excruciating ones. Other days it's an onslaught of attacks that leave me bedridden for days. You just never know.

So why am I only now the irritable and miserable soul that I am? Probably a combination of normal life stress and the fact that in the past two days I had to go to the dentist (hell on earth for a TN warrior) to try to save a tooth that broke, had a sure on my eyelid and the initial stages of an ear infection. All on my left side. You see, the thing about TN is, we can try all we want to manage the pain, avoid triggers and generally just shut up about it. BUT, these three things which would be painful for anyone, exacerbates the pain we already have. For those who remember, TN is a result of damaged or misfiring nerves, like an exposed electrical wire  that you keep on touching. So now imagine that wire that you're touching is already shocking you and then you take the party to the shower. That's kind of how this feels right now. Like I have turned up the voltage on my pain. And I'm pissed about it. I'm pissed about the fact that it's so persistent and intense that I can't concentrate on work.  I'm pissed that it's preventing me from sleeping through the pain. I'm pissed that I'm getting pissed off at my family for ridiculous things.
Most of All, I'm pissed that this is life and I have to just deal with it.
So for now I'll be a big old meanie and hope and pray that soon it will become manageable again. Its either that or I bite my own head off.

To my warrior friends, may your elephant be more gentle to you than mine.

Enough

It's been a while, a long while. I should be grateful, but I'm pissed. Firstly, people told me about remission periods that TN warriors experience. I would tell them I am not one of those since I always have the beast around. Now, after two surgeries, one rhizotomy, many many many med options, I realise my remission has come and gone. My remission was not experiencing the type of pain I have the past few days, every day over the past 6 months. My remission was being able to work 5 consecutive days for a number of non-consecutive weeks. Now it's gone, and I am pissed off.
Granted, the knock on effect of avoiding chewing on my TN side = teeth messed up = avoiding dentists who have to work in and around all trigger zones; resulted in surgical removal of one tooth followed by removal of another in less than a month. Whether that's been the trigger that woke up this damn elephant, I don't know. All I know is that I reached the point of saying ENOUGH !

It could have been while I was lying awake at 3 in the morning working out the time allowed between med doses that I said to myself "I have had enough."

It could have been while I was crying in the shower because it hurt to wash my hair that I said to myself "I have had enough."

Or maybe it was when I realised none of my distraction techniques were working that I said "I have had enough."

It could definitely have been at the moment when I ran out of a full house on Easter Sunday to throw up in the garden thanks to the pain, that I cried "I have had enough."

No

It was hearing the fear and desperation in my daughters voice as she called for her Daddy in between my screams and her "Mommy are you okay" pleas. It was seeing him hold her and the helpless look on his face when he did after the attack had passed. That was it. That was when I reached the point of saying to myself, "They have had enough."

I can't do this to them again. I really can't. I know I can't help it. I know that no one outside our home can understand how bad it really does get, or how hard it can be for them. I just know that if this is the end of a not-so-blissful remission, I cannot be the cause of their emotional pain. I cannot be the reason for that kind of fear in my own child.

I just can't.

Who knows, maybe my elephant will get an itch and stand up for a few minutes every now and then. Until I know that for sure, I am holding my breath and hiding my pain. It's the least I can do for them. They have really had enough.
To my fellow warriors out there, may your elephant be gentle to you today.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader