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

Believe me..... no really, BELIEVE ME

It's been months since I have written anything but I know if I don't write this down now I will most probably end up crying myself into a flare.
In the first 4 months of this year, I have been trying to take a different approach to my life. I have tried to focus as much as possible on my family, my work, my passions. I have tried to ignore the increasing pain frequency and intensity over time. Even on the bad days, and there have been many, even on the frustrating Dr appointment days, the days where I am stressed about the cost of medication, the days when I am heartbroken at missing out on spending time with loved ones....yes even on those days I have tried to work with my TN instead of fighting against it.

Now I am tired. I am so incredibly sick and tired of it all. I have been tired for a while, but that proverbial last straw made its appearance today in the form of communication with one of the doctors I have seen recently. I am surprised, to be honest, at how much this has affected me, since it's not the first time it's happened in

the past 3 years, but it hurts like hell to basically be told that you are lying about your symptoms. It cuts like a knife to be told that your scans do not show how you could be experiencing pain that feels like a knife being stuck into your ear and jaw at random on a daily basis. It crushes the soul to be told that the crushing bone pain you say you feel can't be so, even though there is a valid and proven bone-related diagnosis. It truly is a slap in the face to be told that the lack of red flags on a scan mean that your symptoms of pain in your face are not real.

I still have two, out of the many, doctors who believe me. One is possibly willing to repeat the surgery she did last year in a effort to provide a little more temporary relief....I know that I should be focusing on that right now. Seriously though, the psychological and emotional pain of the reality that is the medical professions' disbelief of those like me, is quite honestly overwhelming every time you experience it.

Today that elephant is at least a ton heavier, I hope that one day soon it will lift itself just slightly and give me a freaking break.

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

Taking it as it comes

It's new years eve and as always, I have been reading messages, statuses and tweets all day about how awesome 2016 is going to be. I am not a pessimist,  but I am definitely  a realist. This means that if I am to be honest with myself, I will say it's been quite a hard year. In fact, if I am really honest, it's been a difficult year every year for a while now. Yes, there have been good times, successes and happy moments, but in reality, they have been in spite of all the other crap. Some may say I am too negative. That just by thinking this way, I am being ungrateful. I beg to differ, and since it is my life, I have a right to.

So what does this have to do with TN? Well, everything, actually.  If I wasn't a realist, I don't think I could have survived the journey that TN has taken me on thus far. I don't think I would have been able to avoid the depression that often comes with chronic pain, go to work when my pain levels were bearable or be the wife and mother that I am. If I didn't take things as they come, use my low pain moments to accomplish  things I couldn't the rest of the time, I would be in bed permanently,  in a mental health clinic, or dead. That, my friends, is the truth. I had to be realistic this year about what I could and couldn't  do.... even if it was something  as simple as opening the door on a breezy day. It is truly, in my opinion, the only way to live with TN.

So for 2016, I am not going to post a status that says it is MY year, I won't be telling the world that I will conquer it.... I will take each day as it comes. TN has taught  me that, if nothing else, and for that, I am grateful.

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

Post-surgical silence syndrome

Yes, I made that syndrome in the title up.....but if it was a real one, I think I could have it. This is something that I have been mulling over lately and, although I would have posted much earlier about it in the past to actually process these thoughts, have become quite convinced  that it is real.
In my previous post, Supporters Unite, I provided a reason, albeit brief, as to my blog-silence, as being a result of the guilt I feel at constantly  complaining. I was feeling guilty for really bringing the lives of those around me to a virtual halt due to my health needs. While I still feel that, some days more than others, I seem to have done what quite a few of my fellow TN warriors online seem to do after surgery. I have developed  Post-surgical silence syndrome (PSSS).
From what I can deduce, looking at posts by others and talking with them in support groups, talking with my surgeon, and quite often talking to myself, MVD surgery (endoscopic skull Base in my case) has many unexpected and seemingly benign results. The first one I experienced is fatigue like you would not believe possible, a tiredness that actually makes you feel like you're physically  walking at the bottom of a pool ALL the time, like everything is in slow motion and no matter how hard you try, you just can't come up for air. After 3 months, I still feel that fatigue all the time, and it's driving me crazy. My surgeon assured  me that part of the reason for this was the psychological toll that major surgery takes on you, especially when you have been warned of the fatal risks attached to that surgery.  Then, the skin changes, this I am basing on my own experience as well as that of my TN friends. I have developed acne for the first time in my life since having surgery, while not particularly traumatic, it is quite irritating to suddenly have a complexion that I didn't even have as a teenager. Finally, the emotional roller coaster, linked to the fatigue, I guess, seems to be the worst. I can go from being completely apathetic to almost biblical rage in a matter of minutes...that is by far the most difficult adjustment I have had to make; controlling my actions so that those emotions don't show outwardly.

Now, the PSSS, the actual reason for my post. I have become somewhat silent regarding my TN in comparison to the pre-op advocacy warrior that I was. Whether it is due to the fatigue, difficulty  with emotional control, guilt, pure  and unadulterated despair at the fact that a lot of the TN attacks have returned so soon after surgery....I don't know. What  I do know, and have seen from other very vocal advocates for awareness online, is that after surgery it seems that there are a lot more things going on in our lives than we care to share or know how to deal with, that the crushing despair at not having a miraculous healing  ( even though we went in to theatre knowing it was unlikely), the need to clarify that the surgery was a pain management  option  and not a cure 100000000 times.......
I don't know? What I do know is that I am still passionate about TN awareness, I still enjoy discussing every day things with friends and family, I am still passionate about my work; BUT somehow, my inner introvert was unlocked during surgery and I just feel like I am able to whisper but no longer shout out loud, figuratively speaking. So, like TN, I guess I have another hard-to-explain issue to deal with now, I have Post-surgical Silence Syndrome. Any expert advice is welcome..... then again, perhaps the elephant has shifted position and now plants itself firmly on my mouth?

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

Supporters UNITE!!!

I have been VERY quiet on this blog for the past month and I wish I could say it is because I have been so busy enjoying every second pain-free since my surgery in August. Unfortunately, most of that time has been spent trying to explain to those I have come into contact with, especially at work, that the surgery was a pain management intervention and was not, and never could be, a cure.

I have also become almost completely riddled with guilt this past month. Not the guilt that I spoke of a while back "May the guilt be with you" in another post, that guilt that prevents you from giving in to the temptation to live up to the "suicide disease" nickname. No, this guilt is about me feeling that I'm always complaining, that I've completely destroyed so many good relationships and family activities because others have to consider my ability to function through the pain. This guilt is one where I almost feel like I would rather just keep my head down, be quiet and try not to make everyone miserable because I am in pain.

It is something I am really struggling with, especially after surgery. I have relief in the 2nd branch of the nerve, and it is wonderful. I am grateful for it. BUT. I still have the same pain I had before, only now it almost feels more amplified in the the 3rd branch of the nerve and in the ear. So yes, my silence has been a difficult one, and I suspect, one I will struggle to push past for a while.

This has also brought me to the title for todays' post. It is October 5, 2015, the 3rd international TN Awareness day and my Facebook timeline is almost completely teal!!! Granted, it is because most of my timeline is full of posts from fellow TN warriors, from TN support groups, etc. But there is also the odd post and shared post from personal friends and family, and this warms my heart. The awareness day this year is dedicated to the children who have to live with TN, contrary to what most of the literature says is the case. Children with TN, who are not believed, because they do not fit the criteria for TN patients with regard to age. The support from all the online posts and buildings lighting up teal in the US, Australia, UK and Canada are awesome, but I want to make special mention of those who support me.

I want to thank my family, immediate and extended, for believing me and supporting me with calls, hugs and lots and lots of understanding. I want to thank the friends, the true friends, who have not decided I am too high maintenance and still invite me over or come visit or call to chat. I want to thank colleagues and management who have taken the time to try to understand more about TN and who have provided me with the opportunity to work from home on a more regular basis so that I can function at a better level than when I was expected to work in the office every day. I want to thank my TN family, the ones who I can literally call on day or night when it all gets too much. I cannot and would not want to go on without all this support.

Sadly, there are many of the TN warriors out there who have NO support. Who have lost their spouse/partner because they can't handle the all-encompassing way this pain affects us; who have had their children pull away from them; who spend all day alone at home without a single person wondering how they are; who are physically, financially and emotionally abused by so-called loved ones.

My awareness day post is a plea. A plea for those who know someone with TN to support them. My awareness day post is a heartfelt thank you. A thank you that cannot be fully expressed for those who have shown support for me and many others.

My goal is to work towards an awareness day next year where more public awareness in South Africa is a reality, but for now, I will continue to #TurnTheWorldTeal, one post at a time.

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