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

Struggling to remain visible

I studied to be a physiotherapist and after working in clinical practice for a short while, I began lecturing at a local University. As a physiotherapist, the primary function of my job and those of my students and future colleagues, was to ensure that we enable patients to reach their highest level of function in their daily lives. To do this, it was imperative for me to understand what physiological and anatomical issues were going on in their lives that could result in having an influence on their ability to perform daily activities of living. So my job was to understand ability and disability on a very literal level in order to work with patients in achieving the most they could out of their lives.

Generally, we all see a disabled person as someone who physically shows signs of not being "normal" or not looking like what the world considers an able bodied individual. Someone who is in a wheelchair, has visible signs of downs syndrome...that is commonly accepted as a disabled person; someone who needs special accommodation to be a part of society, right? Are you sure?

The world health organisation implemented the international classification of functioning, disability and health in 2001. Since then, all health professionals have a standardised framework for measuring a person's level of functional ability. This framework takes into account the interaction of environment, society and the body, or physiological impariments. It stands to reason then that it should not be difficult for a health professional to determine whether or not someone is disabled, right? It's been 14 years, and yet, this is not the case. Those, like me, who have an invisible disability are not easily accepted as having any disability at all. We fight for accommodation in the workplace, government or insurance support offered to disabled individuals, and generally, acceptance of the fact that we do in fact have a physiological impairment that has severely impacted on our lives.
I wonder about this and about why we sit with this problem. Is it because we, as a society, cannot move past the fact that normal is determined by outward appearances? Is it because chronic pain isn't recognised as something that a person can't control? Could it be that we, as those who have these invisible disabilities, are hindering our own cause by hiding the difficulty we have in performing basic tasks? If I were walking around with outward signs of what I live with daily, a gaping, open, festering wound on my my face, would I be treated differently from what I am now? The short answer, yes. If I were walking around with my arm in a sling, would you expect me to carry heavy boxes? No. But if I had a chronic pain condition, like the millions who have Fibromyalgia, where the pain could be the same or worse than that of one with a broken arm, would you expect them to carry heavy boxes and be irritated if they said they could not? More often than not, Yes.

So maybe we need to stop hiding behind the facade of normality. Stop hiding the realities of our invisible disabilities for the sake of our colleagues and acquaintances' comfort levels.

I have difficulty doing what I was able to in the past, before TN. I can't open my front door when someone knocks because the wind generated by that action causes ridiculous levels of pain. There are many days where I cannot shower because doing so is akin to standing under a live electrical wire in a puddle of water while someone holds those wires to my face. There are times when I am unable to answer the phone because just saying hello is too painful. There are weeks where I am unable to go to work because I can't even keep water down, or walk because the action of swallowing is so painful that I throw up and walking causes a vibration in the body that sends me into screaming fits of excruciating pain. I am no longer able to work two consecutive days without knowing that it will take at least 4 days to recover. I am unable to speak continuously for more than an hour (which is required by my job) without becoming severely fatigued or experiencing a lot of pain. There is no medication that eases this pain for me (for many other TN warriors, some medication works, but only for a while). There is no cure for TN. It is not terminal, but it it has a lifelong influence on your life and a huge impact that only worsens as the disease progresses.

Is it pretty? NO. Do I want others to feel uncomfortable? NO. Do I want others to feel sorry for me? NO. Do I receive the same acceptance of those with visible disabilities? NO. Will I every get better? NO. Does that matter to others? Well....... I guess that is up to us.

It is up to those of us with invisible disabilities to break the silence. We need to stop tip-toeing around issues that have these severe influences on our basic ability to function in the world we live in simply so that we do not make others uncomfortable. Once we move out of that zone of comfort, that is when change will begin to take place. That is when we can start affecting enough change for organisations to be held accountable for passive aggressive management of employees with invisible illnesses. Change in social benefits and insurance companies policies for who deserves compensation and who doesn't cannot begin before we move out of that zone of comfort.

Perhaps I'm living in a dream world, perhaps I'm not. What I do know is that I will start shouting from the rooftops if I must, I will break MY silence. I refuse to be invisible. I am not invisible and neither is my struggle. I deserve to be heard. I deserve to be seen. My family deserves the support that any family who take on the role of carer should get.

It may be a struggle, but I will struggle to be visible for as long as it takes.

May the (invisible) elephant on your face be gentle 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

Just between me and you

Hi New TN warrior, I thought I would welcome you to this world with some advice based on what I have learned on this journey so far. So just between me and you...

Firstly, education is key. Make sure you have educated yourself about TN. There are lots of web posts about it, but the more reputable sites are those covering scientific journals and sites dedicated to facial pain research, like The Facial Pain Association or tnnme.com . It's important for your own sanity and for sharing information with family friends and colleagues. More importantly though, it's possible you will come into contact with health professionals who haven't yet heard of this rare disease, believe it or not, and this means you need to be sure of your facts going into a consultation. It's also very important, and I mean EXTREMELY important, to learn that all TN patients may be similar in how they describe and experience the pain. However, for some reason, we all react differently to treatment. What works for some to put them in remission, may not work for others.
Secondly, TN is unpredictable. One day/minute you will feel okay and the next you will feel like you are the source of an electrical storm or that a knife has been jammed into your face...or however you choose to describe your symptoms. It's scary, I know, but something that I am starting to accept.
Next, remembering the first two I have mentioned, it is understandable that you need to be your own best advocate. Your own best weapon as a TN warrior. You are likely to come across a doctor, specialist, emergency room nurse or manager at work that tries to dismiss your pain because either they aren't aware of TN or they see you as "ok" at that moment. This is when your self-education around the disease comes in handy. Your knowledge of TN and the possible treatment out there is how you can know what to ask in a consultation. Your level of understanding about your capabilities in your current pain levels or going in to a possible scenario where you will encounter a trigger, is what you need as a weapon in any discussion with your manager. Do not let someone who doesn't have TN try to dismiss your pain. Don't let anyone force you into a situation where triggers will be inevitable, e.g. having to sit outside in the wind for any reason if wind is your trigger.
That said, something that I really hate to have learnt is that this disease is an unrelenting beast. It doesn't care if you don't have plans for the day or if it's the day of your child's athletic event. It doesn't care of you have just started a new  career and need to be in important meetings. It will attack when it wants to. It's unrelenting, yes, but only you can decide how you respond. If you choose to push through the pain for an important event, you have to know how you will react later (for me pushing through in pain for something I don't want to miss, means days of being incapable of functioning afterwards). It kind of links to the education side of what I have shared. You need to educate yourself about your own limits and be sure that those in your life understand them. I have read many blogs and articles where people with various chronic conditions say that you should remember that 'you are not your disease' or 'don't let your disease define you.' I'm sorry, I honestly don't think that applies to TN. Someone walking past me causes enough disturbance in the air to cause pain...it IS my life! I think I'll leave that sentiment for another day.

Two points I think should be made together, is what I will end my conversation with you on. Find support, either from a family member/members, friends or online in one of the support groups. Your personal, physical support is so important to help you cope on a daily basis. When it comes to the online groups, there are many, find one you feel comfortable in. The value of having others, even virtually, know what you're going through is hard for me to explain. It truly does help. Once you know who really does accept, believe and support you, hold on to them. Your family and friends will often feel helpless because they can't make it better, they can't say 'get well soon' and they can't relieve your anguish in the midst of an attack. You need to acknowledge their helplessness but more importantly, hold on tight to the support you have. You are not alone in this, your acceptance of this last fact is what can keep you going even on the hardest days.
My dear fellow warrior, welcome to the battle, and may the elephant on your face truly be gentle on 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

Atypically typical

Trigeminal Neuralgia is often categorised as either, typical (type 1) or atypical (type 2). Type 1 is  where someone experiences intermittent stabbing/shocking/burning sensation in the path of the nerve. It is debilitating and comes without warning or as a result of a trigger. Type 2 is a more constant burning, pressure or stabbing pain in the area of the nerve. I have the unpleasant experience of having both.
On most days, I have an average of the type 1 attacks 5-20 times but always have a constant level of 7/10 type 2 pain. I have been trying to understand the severity of the disease in a way that I am able to explain it to doctors and those around me but often the words just do not come close to providing a true account of what it is I feel.
Most people with TN will speak of flares as a period of time when pain is at a maximum and can't seem to be relieved by medication or any other methods. Attacks are the more sudden, short-lived pain that brings you to your knees.
I have come out of an atypical TN (aTN) flare of 36 hours now and thought it best to just explain it as it is....perhaps someone out there will understand and it will hopefully help them to understand their friend, loved one, or colleague with this horrid disease.
For the past 36 hours I have been unable to eat or keep even liquids down. My husband has made sure that I have at least tried to. The pain has been mostly a sensation of some demon pushing out my eyeball with a knife from the inside, coupled with a knife or ice pick stuck in my ear and a blowtorch focused squarely on my jaw. I struggled to speak, move or focus on anything with my eyes. Vomiting was all I could do, but that just intensified the pain. I honestly didn't care if I wet myself as walking to the bathroom meant I would feel the vibration that comes with moving, so getting to the bathroom was not a priority. What could bring about such pain? This time... Unintentionally turning to face my husband in bed while he was sleeping and having him breathe onto me. It's not his fault,not mine either...I'm just an atypically typical TN sufferer.

During a flare of 10/10 pain my family begs me to allow them to take me to the emergency room. I know that there are people out there who believe that because I don't go to the hospital, it really can't be that bad. However, being on high doses of schedule 6 narcotics on a daily basis, and hearing the accusations from doctors or pharmacists about being a drug seeker already, it seems quite pointless to go to a place for help when there isn't help available. It's a chronic, progressive condition, so a short term knockout by meds in the ER with a dose of irritation from staff is honestly not worth it. In this case, based on the feedback from fellow support group members, I am again, atypically typical.

So today, I am back down to a bearable 7/10 aTN pain and have had a few 8/10 TN shocks.... But I can walk today, I can talk and I can finally focus enough to read and write.
just another atypical typical day for me. Wishing the same for those I know living with an elephant on their face.

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

Hard work... For what?

I have been "quiet" thanks to quite bad and continuous attacks lately....it basically sucks the life out of you and I have had to prioritise.

I had a conversation with my husband a few days ago that has inspired this post.

One of the common themes in posts on the support groups for TN is that of "I never thought this is how my life would be..." I can relate and add another commonly used part to that sentence "...at this age."

The conversation I spoke of above followed a similar path. I began saying that I never dreamed this life up for me and my family and then stopped. You know what? I didn't dream my life up. I worked hard, damn hard, to get to where I was before TN reared its ugly head. I put in effort, tears, determination, late nights, worked up to 5 jobs at a time..... And for what? To live one minute to the next, not knowing if I would be able to continue a conversation or if I may embarrass myself by screaming like an incensed banshee in the middle of a meeting? Did I do all I have in my young life for me to become a relative prisoner in my own home only to leave when I really have to? Did I work to prove the naysayers wrong so that I would have to deal with many people not even believing the basic premise of who I am and what I deal with every day?  I worked hard to try and achieve ambitions in a relatively young career and in studies...FOR WHAT????

I think this, not the pain, is probably one of the most difficult parts of coming to terms with TN for me. 

So, for today can I ask you to do me a favour? If you come across someone in your life struggling with a chronic pain condition.... Don't underestimate the effect or impact it has had on, not just their dreams but, their hard work in this crazy thing we call life.

To my fellow warriors, May the elephant on your face be gentle with you today.

Carry on

I have realised that many posts I make on Facebook lately end with, "that is all, carry on." I mean it, I really do. What do I mean?
Well, I know everyone has their own life, their own joys, struggles, hardships and victories. I know all too well, as described in previous posts here, that my personal battles are not necessarily high on the list of things to worry about for many people around me. So I post a thought or rant and appreciate you reading it, but understand that your life needs to go on, thus the conclusion to my post, "carry on."

For me right now, to be able to do that in my own life is nearly impossible. I started experiencing pain, the stabbing, electric shocks of pain deep in my ear, mostly triggered by swallowing. This is not usually a symptom of TN. I recently saw my doctor and have now received the confirmation that it's a different type of neuralgia. This is genticulate neuralgia. Rare, as TN is and the fibrous dysplasia (bone tumor) that I have, but even more difficult to treat. Psychologically, this is a major blow. Any new symptoms when you're already fighting to find help for the old ones, just seems to be another slap in the face. You find yourself screaming at the universe, begging for a break.
With new symptoms, comes new meds or trying old meds again. This brings with it the dreaded side effects and horrible brain fog. I'm trying desperately to "carry on" right now with my family, my job, my hobby-turned-small business.... I'm trying.

To my fellow warriors, may the elephant on your face be gentle with you today and allow you to carry on.

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

Out of control

Generally, we all like to have some control over our lives. One thing that TN doesn't allow me to have, just like any other illness, is to have control over how I feel physically. It doesn't allow me to have control over how severe an attack is, though I can try to avoid triggers, I still can't decide when I'll have an attack and when not.

I do not have control over how I will feel in the morning, even if I did go to sleep with low pain levels. I do not have control over how much pain I will have by the time I get to work, even if I was able to wash, brush my teeth and get dressed without attacks. 

I think you get my drift.

Having a diagnosis of a progressive condition, one without a curative treatment, means that I have had to learn that there is a lot that I can no longer control. I have no control over how much it has progressed in the last 5 months.
It has been, and continues to be, a very difficult thing to deal with. As a result, I have found that I try to hold onto as much control as possible in areas of my life where I still have it. Certain aspects of work, being able to choose not to take medication that isn't working, selecting a procedure after I have researched it and discussed it at length with the specialists.... these are all things that I have control over. 

In a way, this is why it is so irritating and at times, infuriating, for someone to say something like, "but you were fine yesterday/earlier." It is extremely frustrating to have simple things that I should and can still do, being taken away from me because others feel that they are either more capable or are fed up with waiting for me to deliver on a promise where in the past I would have done it much quicker. I am not saying that I still expect to, or want to do everything I could before. I am however, finding that I am asking those in my life more and more to at least talk to me about their ideas of issues that affect me. To take away my decision making ability when I still have it, is by far, the most hurtful thing that has happened since my diagnosis and the progression of this disease. 

So, for those, who like me, are struggling to hold on to the seemingly simple matters in life.....carry on. Keep that control, even if your body has decided to take so much away from you. For those who have to live with, and interact with us, remember, this physical condition, though it has its' psychological effects, does not take away my ability to think and reason as I did before. I can still have a reasonable, logical conversation with you (assuming I am able to talk on that day) or email discussion. My disease might reside in my head, physically, but it has not taken full control of it and/or its' contents.

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