The sentence is life........

So you're wondering what Trigeminal Neuralgia means for me? Well, it's something like this:

My brain is the Judge

My head the courtroom 

My body is a prison

And my sentence is " Life"

This prison provides a toothbrush made of steelwool

At times they're kinder and offer me a piece of sandpaper instead.

Allowed to exercise daily in the windy courtyard

Equivalent to rolling around in electrified fencing

I get to take showers

A shower of nails

And bed time is often

Being strapped down on a pillow of fire ants and barbed wire to caress my face.

I get to see my family daily

Their hugs and kisses are like fire

I cut off the offensive hair, that had turned to knives

But still, the prison-issued clothing, a scarf, will continue to torment me, brushing ever so gently against my cheeks.

My question is....

What is my crime?

What have I done to deserve no possibility of parole (medication that works)

Why don't I have a chance of getting out for good behaviour (surgery)

Or am I to stay in this prison with the chance of my sentence being changed to death?

For now, 

My sentence is life

My prison is my body

My head is the courtroom

And my brain, the unfeeling, unsympathetic judge.

My sentence is life.

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

The cost of chronic pain diseases

I am writing in extreme pain right now and because of the pain I cannot rest/sleep. Laying down has become a trigger for my pain and as the pain on the right side has started increasing, so have the severity of the attacks and horribly, the bilateral simultaneous attacks. When I lay down to sleep/rest, it just gets worse. It is really a horrible cycle where fatigue increases pain and pain causes fatigue. But this is not what is on my mind right now. I have posted and spoken of the emotional and physical cost that we pay when we have this disease. However, there is another cost that is frighteningly real and results in stress that many can't understand. In order to diagnose someone with something that is not that common, the result is usually that we visit doctor after doctor, specialist after specialist and have many, many, many tests. These are all incredibly expensive. Even if you live in a country where there is health care available for those who cannot afford health insurance, the costs of travelling for all of these is enormous. Once we finally receive a diagnosis, the medication cycle begins. For Trigeminal Neuralgia, there is no known pharmaceutical treatment that fully controls or halts the process of the disease. Currently, the first line of treatment is Tegretol. This is an anti-convulsant medication that is used primarily for diseases such as epilepsy but also for pain that is neuropathic in origin. For those of us who are not able to tolerate this particular medication, like me, or if it is not successful in controlling the pain, a wide range of anti-convulsant medications and anti-depressants are the next step. Then they start adding narcotic medication.The next step, not an option for me right now, is surgery, which obviously has cost implications as well.

I am like many of those who suffer from TN, in that NONE of the options available to us are doing anything for the pain. It is horrific and incredibly frustrating at the same time to fork out thousands (and I am not exaggerating) of Rands (our South African currency) every month for something that doesn't work.

The loss of income from not being able to work is something that I, thankfully, have not yet been burdened with....but I know it's coming. I have already had to cut down on work hours. Problem is, that because I am no longer able to drive safely, I am dependent on colleagues or my husband to take me everywhere I need to go, including work. With petrol at its current price, the extra driving that everyone has to do adds to that financial burden.

A word of advice, if you are fortunate enough to be relatively healthy right now. Don't rely completely on your medical aid or health insurance. Save up a little every month. When you get to the point where all your medical aid funds are depleted in the first month of the year and you have to continue to find answers and help, any extra money is valuable. When you have to pay over R1000 for just one of the 5 + medications you are prescribed, just to function or at least to be able to get up and go to the bathroom, you learn how quickly we have become accustomed to having money for basic necessities.

I can't end of this post without thanking my family and friends again for their support. The support from those who love you, even if they can't fully understand what you are going through, is the ONLY way to deal with this.




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Just one of those days....

Something I find difficult to explain to people is that there are good days and bad days with TN but a good day doesn't mean I don't have pain or that I am " better." In the human vocabulary and understanding, good usually means good....right?

Actually no. For me, good means that I slept more than 2 hours last night, I didn't start the day thinking I should take a double dose of narcotics because I've only had 2 attacks between waking up and leaving for work, I may have survived the drive to work with only minor attacks on the one side of my face.
So when I say that I'm having a bad day.....well, it's bad.

Today is just one of those days. It's one of those days where I was up until 4:30am and then napped for about 30 minutes on and off until getting up to wake my girls up for school at 5:45am. I have had 8-12/10 levels of pain for days now and it's just getting worse. The weather outside is extremely windy, so I can't even consider going out, BUT, I have to go to the dentist after putting it off for the longest time and need to cut my hair because it's starting to touch my ear and face again, which is a trigger.

As I said, it's just one of those days. It's a bad day. This is something that those with TN and aTN (atypical TN) have to live with every day. Those closest to us start to understand, or at least I like to think so, that some days our levels of frustration with having one bad day after another becomes too much.

On " those days" I honestly cannot fathom how I will live with a lifetime of this. As much as advice and support helps many people, all I wish is that when I answer the " how are you" question with " It's one of those days".... the only response is that the person asking is there to listen if I'm able to talk without increasing my pain, or just hold my hand for a bit. I found this picture so applicable to these thoughts as anything besides a listening ear or physical comfort on those days is equivalent to any of the images below.

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Frustrations, Irritations and Despair

I've been thinking about so many things to write lately but often just get to where I have clicked on "new post"  and then close the browser again, only to spend a few minutes reading and commenting on the Facebook posts in the support group I belong to. Every time I do that, what I see and feel in almost every post is either a sense of frustration, irritation or despair. I think the reason I continue to go back to the group even on the very bad days where all I want to do is sleep, is because I can relate to almost every post.
The question comes to mind though, if all of us are experiencing this disease in a different way and yet can all identify with each other, how can there not be a cure? Why is it that the medical profession seems to be putting a makeshift bandage on something similar to a gaping fracture?
Trigeminal neuralgia, hard to pronounce for many and even harder to understand in severity by most, creates a sense of despair that is difficult to describe. Add in an extremely stressful situation or even just normal every day stresses, and the ability to deal with even a small attack becomes severely compromised.

Each day that I live with this disease I am becoming more and more frustrated with myself. Frustrated that I am unable to function at the level and efficiency that I did previously in my career and research aspirations. Frustrated that I am so dependent on my family, even for the little things like being able to drive to the shop or work. Frustrated with the endless doctors visits, well-known specialists looking at you with that " I really don't know what to do" look, expensive tests, even more expensive medication that doesn't do anything to decrease the pain, etc. etc.

I am irritated by the little things too. Irritated with my body for being tired all the time because I am in pain. Irritated that the pain levels increase in direct proportion to an increase in fatigue. Irritated with the insomnia that I have which is making me more tired which is making me more sore, etc. etc.

Finally, I find that I have a moment of despair at least once a day. It's not the despair you feel when you are depressed. This I do not say lightly, as I have suffered from clinical depression in the past and been successfully treated for it. This is a despair that comes with knowing that there isn't a cure. A despair that deepens when every few days you have an attack that is so much worse than anything you experienced up until now, even when you thought you had reached your limit the last time. A feeling of despair when you have to start making arrangements to limit your working hours or decide if you can even continue working before the age of 35, knowing that you will probably live for decades after that with the pain increasing.

This may seem like a very morbid post, but honesty and a fairly simplistic way of explaining what I'm going through is why I started this blog in the first place. It's the only way I know how to share and, at times, process what I am really experiencing. My message today is for those who come into contact with someone with a chronic illness. Please, please, please, try to understand that there are times that the person may be at a breaking point. They may be experiencing any one of these emotions or all three at that point in time. So when they seem irritable, frustrated at a seemingly silly situation or having what you may think is a pity party...... remember, this is a cycle they are going through often, one that even when they are looking a bit better, or smiling, or active, is always just beneath the surface. A squeeze of the hand or arm, an offer to listen or a simple "we can talk about it later" could be all they need.

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It's the little things....

Have you ever heard someone say "It's the little things that count"? Often in life that is so true and with Trigeminal Neuralgia, as I am sure it is with many other chronic diseases, it's more true than you can imagine.

For me there are various little categories that I can place this in to. Firstly, the pain itself. The slightest breeze, the vibration of the car as you drive, a kiss on the cheek or deciding to chew gum; can cause the most excruciating pain. I honestly believe that this is what makes this disease so unbearable. To know that I won't be able to enjoy a cool breeze on the hot summer days to come. To fear the cool water of a swimming pool, or know that a walk on the beach is most likely out of the question....those little things that bring contentment - it's heartbreaking.

Secondly, the disease. For most people, it is a little artery that is putting pressure on the Trigeminal nerve that is causing their symptoms. For others, like myself, it is a tumor (benign) in the skull (or brain for some people), that has changed the anatomy to the point where there is compression on the nerve. Little pills are often the first line of treatment, followed by surgery for many. I am not one of those who have the option of surgery and that "little" fact is a devastating one to accept. Knowing that many people around me truly care for me and want to help is comforting, but there are others who are not as understanding. Little comments from people, such as, "you look better," "you don't look sick," "why aren't you pulling your weight at work," etc. are difficult to deal with. However, there are those who don't make any comments directly to me or about the disease and choose to be passive-aggressive in the way that they will comment about the changes in the way I can function. Those are the hardest to deal with. That is the sad reality of this invisible disease.

Finally, the little pleasures in life are still there, and I hold on to them with all the strength I have. A hug from someone you love, my daughters (8 & 11 yrs old) asking for awareness ribbons to explain to their teachers what makes me experience such pain, having the energy to cook a meal for my family (even if it's the only thing I am able to do for an entire day), seeing a colleague getting excited when something we've worked on is a success....these are just a few of the things that I can mention right now.

I know that if I do not hold on to those little pleasures, the depression that comes with this disease and the constant pain will eventually add me to the statistics that have led to TN being dubbed the "suicide disease." The realisation that every day you feel a part of you or your life being eaten away little by little can literally be soul destroying and something that no one who has not experienced something similar can understand.

My wish for you, the reader, is that you search for those little things in life that make it worth still being here. Hang on to them, cherish them, and whatever you do..... do not give up.
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It's all relative...

Like most people (I hope), I have random thoughts that pop into my head at times when I've been thinking about something specific or experiencing something. The other day, I randomly thought "this is all relative....but what does relative mean?" I tried to remember what the theory of relativity was and ended up searching, and reading, about it for quite some time. One of the points about Einsteins theory of relativity that struck me was that everything is relative and is experienced differently by every person. That is, if I am standing on one side of a room with a candle in the middle, I will experience the shadow and glow relative to my position and another person will experience it relative to their position.

Now, why is this important. This pain, this horrible, horrible pain, is something I cannot describe given all the words in the dictionary. However, I can say that it is like  something. A kiss from my daughter on the cheek feels like being electrocuted. The shocks that come at random can feel like a knife stabbing me in the face. Ultimately, this is something I am experiencing and I cannot expect my family, friends and co-workers to fully understand it. I can however try to understand that they too are experiencing my reactions to this disease and the symptoms thereof. This understanding is necessary, as we all know that no man is an island. The difficulty though is that most people have the natural instinct to try to offer advice since they are not sure what their response should be. Although advice is appreciated, when pain is hovering between 8-12/10 for days on end and the Neurosurgeon and other specialists are all giving bad news.... advice can be the last thing I am able to handle. I have learned now that someone with a chronic disease often just needs a message of "I'm here" "hugs" or "I'm thinking of you" instead of "why not try this" or "I know someone who had that...they did this" or like I heard yesterday, "Let's face it, this won't kill you, so you just have to accept it."

Don't get me wrong, I understand that from their perspective, their reality of the situation, they believe that this is the correct response. I appreciate the place where they are coming from.... all I ask for though, is that they accept that right now my reality is that it's not going to get better because that's the nature of the disease and my particular situation, my life as I know it is changing and that's hard to accept, my family and closest friends are affected by this and that hurts, my work is suffering and I personally struggle to accept that....and finally, 24/7 pain is not living.
But then again.....that's just my reality.
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The cutlery drawer is empty

Having recently been introduced to the spoon theory, I find that the only way to describe how I am feeling today is by saying that my cutlery drawer is empty. I have had almost 7 months of constant, varying levels of pain. Up until that point it had been short, intermittent jabs to the ear and temple. For the past two weeks though, the pain has increased exponentially along with the fact that its gone bilateral.

So today, having got to a point where I close my eyes at night with pain, and open my eyes in the morning with pain, I can say that I have figuratively gone to my cutlery drawer to find it devoid of spoons. I have been borrowing spoons from my very supportive husband and parents, but they need their spoons too in order to go about their daily lives. I think I may have found one of those tiny souvenir teaspoons under a cushion on the couch where I wish I could continue to sit.

It's really amazing how just a few months ago  it was the norm for me to work a full day, which included driving about 100km; help the kids with homework; watch some tv while working some more at home and possibly work on research as well before getting 4-5 hours sleep. That was the norm. I wasted so many spoons that I wish I could get back right now. Now, my day is usually being dropped off at work, hoping to make it a full day, being picked up, taking a 2 hour nap while Alex makes supper and helps the girls with homework, eating and then sitting in front of the tv in pain.

I don't know if anyone is really reading this, but if you are.... please take care of your spoons. You never know when you may need an extra one, believe me, an empty cutlery drawer is a horrible sight to see.

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Awareness

Today is the second international trigeminal neuralgia awareness day and I've been posting on Facebook to raise awareness. The response has been amazing from friends and acquaintances but I doubt that those who have not felt this pain can ever truly understand it. For the past few days I've had shocks without any trigger. I think I'd be able to handle it if it was still just on the left side, but no, I now have pain on both sides and last night had the torture of a bilateral attack. It hurts more to think that I can't do something as simple as go for a picnic with my family without becoming anxious that I'll have excruciating pain. It hurts inside to know that my family has to deal with this and that just a kiss on the cheek from my girls can feel like a knife cutting in to me.

And so, with the awareness day alerting those around me to this horrible disease, I come to the realisation that I'll be aware of it 24/7 for the rest of my life.... And that hurts, hurts deep in my soul. It's a hurt I can't fully describe without screaming and crying. But I can't, because a tear is the equivalent of an electric shock.

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

There’s an elephant on my face... Why the title

There’s an elephant on my face

You can’t see it

But I can feel it

Then he stomps his foot with a crushing force

And my eye begins to water

And I can no longer see

And my jaw cannot open

So I can’t tell you how it hurts

Yes, there’s an elephant on my face.

There’s a storm cloud rumbling on my head

Can you hear it?

Do you see the lightning strike?

I could tell you how the lightning bolt

Runs from my ear down to my tongue

But would you believe me if I told you?

With lightning strikes galore,

There’s a storm cloud rumbling on my head.

A knife just stabbed me in my face

Do you see it, though there is no blood?

Wish you’d see the stab wound it has made

From my chin across to my nose

But you cannot see a blood drop

Nor the wound

Or feel the pain it brings

Yet I swear that there’s a knife

That’s just stabbed me in the face.

So as the elephant stomps his feet

And the storm cloud rolls on in

While the knife is stabbing yet one more time

I ask you again

To see that…

There’s an elephant on my face.

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