Trying To Stay Positive

I have had this condition for 13 years. I will not say I suffer from it.

They could have told me I had terminal cancer, and that would be far worse. This is not going to kill me.

I love life, my husband, my daughter, my beautiful grandchildren. I make the most of remissions and will not allow TN to take over my life. When it rages, I never think , why me, because I must have been picked out of the masses to make me a stronger person. I must admit that I do not fancy getting older, I am 62 now, and cannot imagine being this way forever, but as none of us know how long forever is, you might just as well get on with it.

I think it's really important to keep stress levels down, and problems follow me around but I find a positive attitude and never letting it take hold of my life make me feel more in control. 

Written by a very positive lady living with Trigeminal Neuralgia


 

Puzzle

Gilly Cannon writes a blog called Brainstorm. She started writing her blog when her husband developed Trigeminal Neuralgia in 2011. As we have said before, Trigeminal Neuralgia affects the whole family, not just the person who actually has the condition. The following is a post which she made in September, 2012 and it ties in perfectly with the puzzle picture which we put out on our Awareness Page today.

The Jigsaw Puzzle Of Life

There is nothing like sudden or unpredictable illness to throw you off kilter. In the tightly packed, fast paced lives we lead, there is little room for a throat infection, a virus, a broken limb or something more sinister. And yet when it happens, with no choice but to accommodate it, you make room for that illness in your lives and adapt.

It could be your own illness, your spouse's, your child's or your parent's. Each affects your daily and weekly plans  differently. But each impacts and squeezes your carefully arranged puzzle piece life where everything just about  fits together perfectly (on a good day!). Whether it is staying home from work to nurse your child through an ear infection,adding in a visit to your aging parent every day in a nursing home or accompanying your spouse to endless doctor's visits and treatments. Somehow your bit piece life expands to allow these extra parts to fit in.

What happens when the jigsaw pieces have been thrown in the air and some land upside down or on the floor ?

What happens when a piece is broken or lost forever?

How do you begin to piece the picture back together? Repair the broken pieces, substitute the missing ones? 

How do you live with the uncertainty that you may never complete the puzzle as you know it again and rearrange the puzzle into a new picture?

How do you find the energy to pick up the pieces, examine them again and start over?

Trigeminal neuralgia forced us to rearrange our puzzle. As I described it back in  November last year in Brainstorming-Fri Nov 4 2011)

Nerve pain is a challenging opponent. Trigeminal nerve pain has an armory of weapons and is difficult to fight. it has unpredictability,suprise,increasing intensity and immunity to medication on its side. It shows no mercy,bombards for hours with electric, stabbing like pains and demands attention day and night. it tortures its victim for months and his loved ones who feel helpless and lacking any weapons with which to fight.

A year on thanks to the success of brain surgery, Jonny has NO electric pain but we recognise that we will always live with the shadow of some head and face aches that come and go unannounced. They are well controlled with medication, but anticipation and unpredictability inevitable alters our life puzzle and sometimes leaves us picking the pieces off the floor and trying to make them fit back in.

As the caregiver my life jolts back and forth like driving a car with the brakes on and my response has evolved in the following ways.

1. Long term planning
We are finding our way back into making long term plans. It has been a while since we have made them and there is a volatility about living with facial pain that we are learning to manage and adapt to. So in the meantime I ask my friends on the spur of the moment to come for lunch, go for a walk, watch a movie, have a cup of tea and they have generously learned to be spontaneous with me.

Brookside Gardens

2. Finding pleasure in nature
I walk in beautiful gardens (Brookside Gardens is a favorite.) I plant flowers, lots of them, everywhere.Their life force, beauty and color and pattern lift up my soul and remind me  of birth, growth and resilience  in this uncertain world. (You may enjoy reading  Rabbit Wars and Among The Weeds)

3.Taking Care of myself
I take deep, slow, rejuvenating  breaths, that calm and soothe. 

4.Having excellent access to the medical specialists
I have the name of the neurologist on speed dial. I text him and he calls us back. He cares that our life's jigsaw should not be so interrupted and provides encouragement and solutions that shape and mold the puzzle pieces back into place.

5.Finding Comfort in prayer
I pray, hard, often, with others and by myself. I talk to G-d and whoever guides me. I ask for help and insight and courage and wisdom and sometimes when I am listening carefully an answer comes to me as a whisper in my heart.

Gilly

If you would like to read more from Gilly's blog, you can find it here www.gillycannon.blogspot.com

If you are a carer for someone with Trigeminal Neuralgia, or another horrible condition, how do you cope? If you would like to leave a comment below, please do. Or you can contact us at our Awareness Page on Facebook.

Let’s start with some empathy, compassion and understanding

What is trigeminal neuralgia and what can it compare to in pain intensity? Trigeminal Neuralgia (TN) is a nerve affliction in the face. The pain is recognized as one of the most painful known to mankind. As of today there is no cure.

Yes you say that I have heard, but what does it actually mean? First of all it is important to understand that this is not merely a headache or something you can snap out of. A headache can be treated with an aspirin and the pain will in most cases fade away. That kind of medication does nothing for nerve pain. What might help the pain is anti seizure medication that needs time to build up in the system and nothing you can take when you feel like it, or just take an extra.

As to positive thinking and just get on with it, it’s very easy to say but not so easy to do when your having bad pain and everything you do from eating, drinking, talking to actually breathing sets the pain off even more. To get an idea you can try to put clothespins in your lip, cheek, nose etc and see how easy it is to ignore that pain. And that pain is nothing compared to the intensity and pain of TN.

So what can we compare the pain with that everyone can recognize. Many have TN type 1, meaning zaps and lightning sharp pain. Each attack can last from a few seconds to hours.

The mild TN attacks can on the pain scale be compared to: Whiplash, ear infection, mild back pain and the flu...

Medium TN attacks are at the same point on the pain scale as: Migraine, dislocated elbow, arthritis, ingrown toenail and childbirth

Bad attacks are actually over the pain scale in intensity and women say they prefer giving birth multiple times than having that pain.

Some have TN type 2 also called atypical TN, aTN, a constant pressing, churning pain that you have 24/7. With aTN you’re never pain free.

What does aTN compare with on the pain scale?

Mild or what most call low pain is actually higher than what a normal person would endure before asking for an aspirin. Mild pain is at the same place on the pain scale as tooth ache or strong head ache, and higher than hitting your head or having blisters on your feet.

Medium aTN pain is around the same intensity as hemorrhoids, broken arm or appendix.

Bad aTN pain is also over the normal pain scale, more painful than giving birth or dislocated elbow. And the pain is 24/7 and can be for months at a time before lowering. ATN pain never disappears.

Some have both type 1 and 2, and when both are bad everybody can understand that that pain is unreal, not understandable and utterly excruciating.

Then we get the question, how can you live with that pain, that’s not human and I don’t understand.
Well, first of all, we don’t have a choice do we. You have to find a way to manage to live with it. Some can get better through medication and some can have medical procedures done. Some have to live without medication as they are allergic and some have had surgery but the pain came back. Regardless we just have to find a way to cope and go on living.

Today there is a lack of knowledge amongst medical professional and dentists. Sufferers can go years before getting diagnosed. Many also lack the support of friends and loved ones as they have difficulty in comprehending something they have never experienced and therefore reject.

We need awareness – and we need a cure. But let’s start with some empathy, compassion and understanding. Can you do that?

Trigeminal Neuralgia - Support

Support is very under-rated. Nobody really knows just how much it is needed.....until you don’t have it.

Thankfully many people with Trigeminal Neuralgia do have loving and caring families and understanding friends.

However, sadly, for some people, that support is not there. It possibly was there in the beginning of their journey with TN, but gradually (in some cases, fairly quickly) people backed away, leaving them to cope on their own.

Support groups become crucial for those people. Especially online support groups. To know that they can have people to talk to at the click of a button is so important. People to listen to their worries. People to cry to. People who understand. People. Just people.

But it is still never the same as having the person sitting next to you hold your hand when the pain gets bad.

So what happens to those who don’t stay. Why do they leave? Can they not take the stress? Can they not face watching the person they care about in pain. Or do they simply want an easier life. Perhaps that is a question we will never know the answer to. 

Perhaps those giving the support also need support.

Life is hard.

Life with Trigeminal Neuralgia is harder.

So to all those who are there, who stay through thick and thin, through all the pain, we cannot thank you enough.

If the shoe were on the other foot, we would be there for you.

 www.facebook.com/endTrigeminalNeuralgia