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.