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

FAR from normal

I've been avoiding this particular post only because I am trying to figure out a way to write in as positive a manner as possible, while staying true to my realistic approach to life.

I am FAR from normal. Yes, I know that normal is relative and honestly, normal can be boring for many people. I'm FAR from normal because right now I am filled with Fear, Anticipation and dreading the Risk of what I'm about to do to achieve a sense of normality. Normal in the sense that I want to be able to open my front door when someone knocks without first having to cover myself up like a mummy and literally hide behind the door when I open it. Normal in the sense that I would like to work Monday to Friday without a second thought and definitely without the pain and fatigue that results from doing so. Normal in the sense that intimacy with your spouse isn't a complex series of avoidance of touching while all you want to do is hold each other. Normal, normal, normal.......

In a few days time I will be going under anaesthetic for a surgical procedure called Transphenoidal Endoscopic Skull Base Surgery.  

In this procedure, the skull base surgeon (an ENT who has specialised in skull base surgery) and the neurosurgeon will go into my nasal pasages and cut through to the base of my skull. Using a GPS navigation system, they will carefully work on removing the tumor piece by piece over a minimum of 6-8 hours which has slowly been taking over my skull base and is thought to be the reason for my TN and other cranial nerve pain. The tumor is full of blood vessels and located adjacent to my brainstem and carotid artery, not to mention the other nerves. So, according to the doctor, they will literally have to move a maximum of a millimeter at a time and remove a piece of tissue, stop the bleeding, and then move on and repeat.  This particular surgical technique boasts impressive recovery times and minimal risks when used for removal of pituitary tumors. Obviously, mine is not a pituitary tumor, or in fact, one which any of these surgeons have removed before. I guess there always has to be a first time for everything.

I have a 50% (optimistically) chance that it will work in terms of helping with my pain. There is also the risk of complications. Honestly though, I am accepting this risk with the support of my family because there really is no other option. 

This got me thinking, for all the TN warriors out there who consent to surgery, we are all plagued by the fear, anticipate the potential relief and acknowledge the risks involved. Brain surgery is not something to laugh at, as with any surgery. However, when you are in this much pain, you honestly would pay a guy on the street corner to cut off your face with a chainsaw in the midst of a severe attack. I for one am grateful that technology has advanced to allow for this endoscopic surgical technique, as, in the past, skull base surgery would require literally removing a part of my face and lifting the brain up in order to get to where this particular bony tumor now sits.

Funny how TN patients can talk about brain surgery as if it is a trip to the dentist and vice versa. Strange how many around us do not realise the magnitude of the actual decision to do this and the utter devastation we feel when we are denied surgery by so many doctors. 

I don't know if it will work. I don't know if this is the last time I'll go under the knife, though I know that if it doesn't result in any relief, I will most probably be willing to go for any other procedure available. And that, my dear friends, is how desperate this disease can make you. How absolutely ridiculous it can sound to us to hear someone say that we should learn to make the best of it for the rest of our lives and NOT go for risky surgery. 

An so, I sign off today while reminding every single one of my fellow warriors.....Do Not take no for an answer. Keep searching for a doctor or team of professionals who realise the importance of achieving a sense of normality, a team who will walk down the path with you to the point where you are happy to be able to say you have done everything possible to deal with the hell TN has put you through. It may be surgery, it may not be. Whatever the case, keep fighting until the Elephant on your face becomes an addendum to your story and not the introduction and conclusion.





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

I'm okay

There's a popular spoonie who goes by the name of Mrs Welches on social media. She regularly posts pictures and posters that resonate with me. Today I saw one that I am sharing here explaining what it means when we say, "I'm okay."

I would like to elaborate on what that means to me, since its invariably my response to a "how are you" these days.

I'm....
Overwhelmed
Killing myself
Angry

Yearning

I am Overwhelmed  by the effects that TN has had on my life. Overwhelmed by the pain, the constant, excruciating, ever increasing pain. I am overwhelmed by the decisions that I find myself needing to make regarding my life, my future, my identity. I'm often overwhelmed just at the thought of having to do simple tasks, taking a shower, brushing my teeth, opening the front door when I can see that the wind is blowing outside.

I am Killing myself daily. Not literally, but figuratively. I am killing myself just trying to work for more than one day at a time. I'm killing myself trying to push through the pain on days when the kids need me to be there for them, helping with homework, going to a performance, supporting them at an event. I'm killing myself emotionally, trying to be strong until the kids go to bed each night just to give them a sense of normalcy.  It may be hard to believe, but it is killing my soul just knowing that I'm losing my ability to fight through the pain as well as I may have done last week, because this week is just so much harder and I know that next week will be worse.

I am Angry! I am filled with rage at this body that I possess. I am no longer as angry as I was before with doctors or colleagues or people in my life for not understanding and believing me. I'm angry at this disease. I'm angry because of what it has taken from me. I'm angry because I can't sleep, I can't eat, I can't talk....when the pain is at a maximum. I'm angry that it takes from me simple and important pleasures, like physical intimacy with my husband, kisses from my kids or my parents, long conversations with good friends. I'm seriously, dangerously, angry right now. The anger obviously is the only thing that fuels me enough to go on some days, but anger of this intensity can't be good.

I am yearning for so many things. I'm yearning for the me that I was before all this started. I'm yearning for the dreams that I have had to give up on and for clarity in making new ones and having the courage to attempt to achieve. I'm yearning for a few minutes, seconds even, of relief. Most people with classic TN do not have constant pain, unfortunately, I am one of the many who do. I am yearning for a night of uninterrupted sleep. I'm yearning, and aching, for comfort for my husband and kids as every attack and flare breaks their hearts in so many visible ways. I'm yearning for a cure for all of us who suffer this horrible fate.

So if you ask me today, how I am doing. I can honestly say, I'm okay. I like Mrs Whelches description and explanation of what she means when she says it, this however is mine. My explanation can't fit onto a poster, and I believe that hers might not either. BUT, I am grateful for those like her who dare to say the things that resonate so well with all of us suffering with invisible, chronic, illnesses and pain. I'm proud to be a fellow spoonie with her and continue to make it my mission to educate and inform others about it through my own social media presence. Some days though, I'm just okay  and those are truly the days that I find it harder than most to fulfill that mission.

For my fellow TN fighters, warriors we may be, but remember, it's ok not to lie when asked how you are today, it really is ok for you to be  okay. 

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

Life Changes

Life changes. Technically I could leave the post at just those two words and I would be making my point. However, as this is a blog and not Twitter/Facebook, I should probably elaborate.

Right now I'm sitting somewhere where sat a year ago and the year before that and the year before that. I am sitting at a Fellowship programme that I am privileged to be a part of.

Now, before you ask....but what are you doing at a conference when you just had surgery last week, it can't be that bad then, right? Well, let me explain.

This programme is directed towards improving the health professions education arena in Sub-Saharan Africa. It is a programme of like-minded health professionals who are all passionate about creating a group of educators who strive to ensure that healthcare on the continent is improved by improving the education of those who will one day provide said healthcare. The organising and facilitating group, of which I am blessed to be called a part of, are my friends, close colleagues and for some of them, my career mentors. They understand what I'm going through (to a degree) and support me by allowing me to find the joy I need in participating, albeit minimally, this year while also resting when needed.

With that explanation out of the way, let me tell you why I am so taken aback by how much life changes.

As little as 1 year ago, I was here, and loved it. I was energised. I was excited and excitable. I was driven by my passion for the cause as well as my passion for my work. I love(d) my job. I love(d) the opportunities I was presented with to help others see their potential. I was busy working on my PhD proposal, managing work matters in the evenings, calling my family at home while missing them like crazy, taking walks in the evening when the sessions for the day were done and visiting with friends.

This year, I'm recovering from surgery, though the majority of the surgery pain has gone. I am in pain, my "normal" pain, but pain nonetheless. I am tired. I participate where I can, sleep when I need to and run out of the room when I have an attack. I can't handle the 1866 emails in my work inbox and can barely handle the whatsapp messages when they come through. I struggled to walk up and down the stairs today when the vibration of my steps once again caused attacks. Even if I had a car here, I can't drive, I haven't been able to in almost 1 year. This year, I am glad to be here, just to give my family a break. I needed to give them a break from me, and that breaks my heart. I'm glad to be here to get some of the passion and energy I need, even if it's in short bursts. I am happy to be here where I am still able to say - Screw you, TN, you can't take this away from me too.

I know when I leave here next week, it will be to another doctors' appointment where they will discuss the plans to give me glycerol injections into my skull to provide temporary pain relief. I also know that it will not be the last visit or the last option they present me with.

I can't look forward to going out to a park for the last of the summer with my girls, because it's too windy and even my scarf isn't enough protection against the pain of the wind most days, anymore. I can't look forward to getting back to work because most weeks, I am only able to cope for 1 full day at work. I am slowly, but surely, running out of spoons because I'm using up, not just the ones I need for tomorrow, but those for next week, next month, etc. etc.

So yes, I could have just said, Life Changes.
But really, could it have meant what I just said?

Life changes, enjoy every single pleasure, fear, joy, hope, sadness, excitement - filled moment. One day it may change for good.

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