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.
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

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.
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 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.

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

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.

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