Making the Inivisible Visible

How many people do you know who have an invisible condition? If they don't tell you, how would you know? It's invisible.

So, could be many more than you realise.

Very many more.

We never know what goesver know what goes on behind a happy, smiling face.

People living with a physical or mental health problem which cannot be seen look fine. They look healthy. But in actual fact, they are living with something which may be quite horrendous. Something frightening. Something painful. Something which has a huge impact on their life. But....they look fine.

Their disability is already bad enough, without having to then deal with obstacles and prejudice.

The world needs to learn to see beyond disabilities. But it also needs to learn to see beyond the invisibility of some disabilities.

We never know what goes on behind closed doors. Likewise, we never know what goes on behind a happy, smiling face.

People with invisible disabilaties often get criticised when using disabled parking areas. "They shouldn't be using that space. Look at them. They look healthier than me!" But the truth is that they have been granted the disabled parking badge, because they have a disability. A doctor has signed off on it, and the person has paid for it. Looking fine doesn't mean being fine. They need that space close to where they are going for a reason. Do they need to have notes left on their cars saying they have no right to the space? Or strangers approaching them demanding they move their cars? No, but this is often the reality for the invisibly disabled. It is difficult enough dealing with the disability itself, without this added problem.

Another big issue is medication. Sometimes people are accused of being drug addicts. They are not. They do need to take regular medication to manage their condition. This is not a choice. Yet even pharmacists sometimes question the patient's prescription. 

Trigeminal Neuralgia and other facial pain conditions are just some of the many invisible conditions. People can be living with unbearable pain, but nothing can be seen. Not even by a doctor. 

We have created the following short video about Trigeminal Neuralgia, in the hope that it can possibly help bring some awareness about this extremely painful, but invisible, condition. 

Invisible illness week

This is invisible illness week (28th September - 4th October). End TN has joined with many other groups for other invisible conditions to try to get more awareness for the many conditions which cannot be seen.

We want to make the invisible visible.

We can make a difference, but we need your help.

Please share blog posts, videos and posters about invisible conditions, using the following hashtags when you post: #MyInvisibleFight #iiwk2015 #Invisibleillness along with the name of the condition which you or someone you know lives with.

Please help us make the invisible visible.

How do you view your pain?

The way we view our pain can affect how we cope in our daily life. If we see pain as an enemy, we feel we have to constantly fight it and quickly forget that there are other ways of seeing our condition and our pain.
Alaskan TN patient, Jordan Riggs, writes about how she sees her pain and how this helps her cope.

The label "Medical Warrior"...and why it isn't appropriate for all patients with chronic illness

Imagine, for a moment, living in a household that is constantly simmering with strife. Interactions between yourself and the other occupant is adversarial at worst, and resentful at best. It's not a simple personality conflict that pervades the relationship: it's a chosen rivalry.  Every morning you wake up determined to be bigger, badder, and more determined than the enemy who, in the adjacent room, is also waking up.  The experience of constantly trying to dominate- and feeling like an utter failure when you're occasionally dominated in return- is mentally and emotionally exhausting.  The compulsion to exert control over your housemate was originally a coping mechanism for how their volatile behaviour negatively impacted your life.  However, that desire for control has since grown into a beast of bitterness and sensation of powerlessness.  Rather than listen or intuit what your antagonist requires for the two of you to live in harmony, you instead embrace- even promote- constant conflict.  You consciously perceive yourself as a willing aggressor, despite feeling drained from the constant sense of combat.

Now, take a moment to replace  the above scenario's "household" with "body".  That belligerent housemate- the one that constantly causes trouble when you're most vulnerable- is Trigeminal Neuralgia.  You're a patient who has adopted the label of "Medical Warrior".  As such, harmony with TN is not an option: it must be ignored, loathed, "put in its place".

But if you're always fighting your own body- physically, mentally, emotionally- is there ever really a winner?  Is putting life with a disruptive disease in the context of "Fight, fight, fight!" always the most beneficial option?  Unless you or the doctors create a potentially fatal situation, TN itself cannot kill you.  Continuing with the earlier theme of personifying this disease, TN is an incredibly annoying, but ultimately impotent buffoon who can drive you mad and cause untold amounts of grief- but it isn't a menacing assassin holding a gun to your head like a deadly disease can (and does).  Evaluating our journey with this disease through the lens of a self-proclaimed "warrior" can, if not kept in check, cause the distinction between emotional perception and actual reality to become blurred.  Ironically, by regularly maintaining a perspective of ourselves as a warrior, we also give more symbolic power to our disease: suddenly the TN goes from being a simple malfunction in our brain to a foe of epic proportions, one that we fool ourselves into thinking can somehow be defeated by aiming hostility at it.  A blood vessel won't spontaneously stop compressing a trigeminal nerve because a TN patient wakes up every morning with a battle cry of "I am a medical warrior!".  The often-overwhelming pain won't suddenly stop affecting every aspect of our lives because we try to be superior to, and dominant over, the disease.

Rather than pour precious energy into cultivating the mindset as a warrior, what if we instead sought to cooperate with TN?  What if all of that strength and courage it takes to maintain a combative attitude instead went into nurturing an accommodating relationship with the disease?  How much more fulfilling would our life be if we embraced a more balanced approach, choosing when to unleash our inner warrior when it serves us best (gearing up for an MVD, first consultation with a new neurologist, etc.), and extending graciousness and acceptance to our disease when everyday life is routine?  

For some, being a warrior is the only option.  For others, however, relating to their disease exclusively as a warrior can become more draining than the disease itself.  There are other ways to emotionally approach and psychologically manage chronic medical conditions like TN than to constantly be in conflict with it.  It can be challenging to push the tough, self-denying, "black-and-white" thinking of a warrior aside to be honest with oneself.  It can be even more difficult, initially, to make changes that self-honesty has indicated would be a healthy departure from what we- and others- expect of ourselves.  Any chosen path comes with its own inherent benefits and drawbacks, but only a patient can determine which path is right for them.

Invisible Conditions

Trigeminal Neuralgia is an invisible condition.

One of the most difficult aspects of living with Trigeminal Neuralgia is that it cannot be seen by people. "Can someone really be in so much pain, but have no visible signs?”

Many people need evidence, something visible, something tangible, before they can truly believe that someone could possibly be living with such cruel and savage pain. After all, if it were really that bad, doctors would have found a cure by now. Wouldn’t they?

Sadly, it is that bad, and even more sadly, there really isn’t a cure.

When there is no understanding, it affects the patient so much.

They feel like they are not believed. They feel guilty because of their inability to live life as they should. They feel like failures, as they cannot live up to their own or other people’s expectations. They feel that they need to hide their pain from others. They feel more and more isolated with their pain. They become depressed. And it becomes even more difficult to deal with the pain.

This is not just related to Trigeminal Neuralgia.

There are many invisible conditions.

Can we tell if they have an invisible condition?

Can we tell if they are ill?

Can we tell if they are depressed?

Can we tell if they are grieving?

Can we tell if they are being bullied?

Can we tell if they are struggling financially?

Can we tell anything about a person simply by looking at their face?

Of course, we can’t tell any of those things just by looking at someone's face.

But we, as humans, tend to judge too readily.....even those of us who believe ourselves to be non-judgmental. We all do it.

We notice the grumpy looking shop assistant and think they could do with smiling a bit more. We don’t wonder why they are grumpy. We don’t really give a thought to what they may be going through. We possibly don’t even care.

We see a car pulling into the disabled parking space and notice the driver getting out and walking unaided into the supermarket and presume he isn’t disabled at all and shouldn’t be parking there. We don’t give a thought that by the time he has finished his shopping, he possibly will be struggling to walk from the checkout back to his car. We just think he was wrong to park in that disabled space.

We hear so much on television and newspapers about people fraudulently claiming disability benefits, that when our young, healthy looking neighbour hasn’t been working for six months, we presume they are lazy and work-shy. Do we even entertain the thought at all, that this healthy looking young man, may actually be suffering greatly in some way? Depression? Anxiety? Living with invisible pain like Trigeminal Neuralgia?

Perhaps we all need to take another look at those faces.

Perhaps we need to imagine a large question mark on their foreheads to remind ourselves that much of what goes on in life is actually invisible.

Nobody likes to be judged.

Perhaps a little more compassion and empathy could make everyone’s lives a little better. 

Please help to bring awareness about Trigeminal Neuralgia and other Invisible Conditions by sharing our blog. Awareness can bring much needed understanding.

Awareness Day

Awareness is so important

Without awareness nobody would know about so many dreadful illnesses and conditions. We wouldn’t know about troubles throughout the world, about starving nations, about war torn countries. Trigeminal Neuralgia is only one of many things which needs awareness and help.

Living with chronic facial pain like Trigeminal Neuralgia can be extremely isolating, exhausting and even frightening. There is so much more to living with the pain, than simply living with the pain. More needs to be done to help people. More understanding from doctors. More research needs to be carried out.

With awareness, hopefully we can achieve that.

We hope that one day, people will hear the words “Trigeminal Neuralgia” and immediately understand how much pain this condition causes. We, the sufferers, are really the only people capable of doing this.....and it can be done. By talking about our pain, by writing about it, by trying to get as much exposure as possible, we can help people understand.

If we say nothing, people will never understand.

If we say it is a migraine or earache because that is easier than explaining, people will never understand.

If we just give it that nickname of the Suicide Disease, people will still never understand.

The only way we can expect people to at least try to understand is for us to name it and explain it.

Awareness days are an excellent way to get more exposure, but in actual fact one day in the year is only a very small part of the awareness work which goes on.

We all need to work constantly, throughout the year to get more understanding. We need to work hand in hand with the official TN organizations. We need to ensure that any information we pass on is correct, easy to understand and it needs to reach the eyes and ears of not only TN sufferers, but their families, friends, colleagues and even medical personnel if at all possible.

With the internet, we have knowledge at our fingertips. Knowledge is power. The internet has made the world much smaller. Social media can play a huge role in awareness work. The ‘share’ button must have been invented for people trying to raise awareness.

People have often asked, ‘Why bother to share posts about TN? Does it really do any good?’ The answer is yes. To another person suffering, our posts help them feel less alone with their pain. The knowledge that another person knows exactly how they feel helps. Our posts also give them a way of explaining their pain. So if one more person understands this horrible condition, then it is definitely worth sharing the posts. However, we understand that not everyone feels able to share posts about their condition, and that is fine too.

Awareness posts about Trigeminal Neuralgia help people, but more than that, they also bring hope. We know there are no magic answers, but when we have hope, life is so much better.

For more information about the research being done, please take a look at the Facial Pain Research Foundation's website. http://www.facingfacialpain.org/

Trigeminal Neuralgia can be difficult to explain. We have made posters and videos which can help do this. 

• Faces Behind The Pain video
• Trigeminal Neuralgia Challenge Video
• What is Trigeminal Neuralgia (in various languages)
• Pain Attack and info cards (in various languages)

For more information and awareness material which can be shared, please visit the End TN page on Facebook. www.facebook.com/endTrigeminalNeuralgia 

Trigeminal Neuralgia : More To It Than Pain

Trigeminal Neuralgia is a horrendous, painful condition. There can be no arguing about that. However, there is so much more to living with a condition like this than just the pain.

Dealing with any chronic illness can be soul destroying. Life can change so much. Relationships change, and sometimes sadly fall apart. People often can't continue to work, which can bring financial problems, which then bring on more worries.

So many aspects of life can become affected by chronic illness.

Emotionally, living with chronic pain can be overwhelming. People often say they feel sick and tired of feeling sick and tired. How true that saying is. Pain from a condition like Trigeminal Neuralgia can also be incredibly isolating. People often feel so very alone with their pain feeling that nobody understands, and often, that people who should care, don't. That in itself can bring about problems within relationships and lead to serious insecurities.

Then there's the fatigue. It's not just a tiredness which can be shaken off after a good night's rest. People living with pain can become tired, physically and mentally. It can be emotionally draining.

People can become frustrated and exasperated by what their illness does to them. They want to be able to lead the life they had before, but the pain just will not allow them to do so. They can feel despair and hopelessness when treatments don't work, and they can begin to lose hope that anything can help.

Panic, anxiety and fear are three emotions which nearly every chronic pain sufferer lives with. These emotions could stem from worrying about their job or how to pay bills. Could be worrying in case the pain will get in the way of a family celebration. Or it could simply be worrying about what the future holds. Sometimes, living in fear of pain can be as bad, and controlling, as the pain itself. Even people who have pain remissions probably worry every day in case their pain returns.

People can get impatient, snappy, and often  irritated about things which would never have mattered before. Possibly even over-sensitive. A joke, or a funny comment may not seem so funny to someone living with pain.

They can feel bitter and resentful at the changes in their lives. They may feel like a failure, feel worthless, feel they are a bad parent, spouse, son, daughter, sibling etc. They often feel that they just can't cope with this new situation they are in. Life can seem so unfair at times…….

Depression can easily take hold.

This drawing has been used with kind permission from the artist Michel EL Hachem
More of his art can be viewed on his Facebook Page or his Devian Art page

Probably everyone, whether living with pain or not, has experienced some of those emotions from time to time. But when living with chronic pain, these emotions can sometimes take over. It becomes an effort to do anything. It can become easier just to disappear into their own world, because the pain is too much. Too much to deal with and too much to explain.

All of those emotions are completely normal. But, we do have to try to change what we can so that those negative emotions are not allowed to drown us. We need to learn to ask for help and support. We need to be 100% truthful, especially with our doctors. They need to know how we are emotionally so they can try to treat us as a whole person, not just to try to treat the pain.

Nobody should ever be ashamed or embarrassed to admit how they are feeling. Admitting it is very often the way to move forward. There is help out there and there are people who understand. Everyone needs a good support network. But sadly, not everyone has that. Sometimes online support groups are a person's only real support. These are often run by people in the very same situation, so they do understand, and often, together, they can find a way to help one another.

If you are feeling like this, please reach out for support and help. Don't let depression eat away. The further you go down, the harder it can be to climb back up, so it is important to reach out for help sooner, rather than later.

Living with chronic pain can mean a lot of learning. 'Learn to accept' are three very easy words to say, but accepting this pain is far from easy. However, accepting doesn't mean that we have to like the change, but by accepting it, it can be a bit easier to find ways of coping with it. Learning to realise what we are capable of, so we don't set goals that are too high. Learning to realise when we need to rest. Learning to relax. Learning to make the best choices. Learning to make priorities. Learning what is right for ourselves. And possibly most importantly, learning to ask for help when we need it.

Trigeminal Neuralgia : Explain The Pain

If you read our last blog post, you will have seen that a physical injury caused Shelley to suffer from permanent facial pain. When the bruising was there, everyone could see her pain. But when the bruises went away, Shelley had nothing to show for her pain, in other words, she had an invisible condition.

This is what TN sufferers are up against all the time. There is nothing to show for their pain. Many non-sufferers  can’t understand it because they can't see it. How can we have so much pain, but not a mark to  show for it? People sometimes doubt the pain. People think sufferers are possibly exaggerating how much pain they deal with, possibly looking for attention, or possibly even just lazy! 

People are sometimes judged on how much medication they use. They are even sometimes accused of being drug addicts.

Even doctors (the very people we rely on to help us) sometimes doubt their patients. Some doctors will not give adequate medication to help. When a desperate patient goes to Emergency because they are in so much pain, some doctors haven't even got a clue what Trigeminal Neuralgia is. They don't know what they can do to help, and often turn patients away suspecting they are drug seekers. 

Some pharmacists have also been known to turn people away without filling their prescription because they suspect the person is either a drug addict or selling their meds. Does a pharmacist have the right to question a legitimate prescription written by a legitimate doctor for a legitimate patient? Apparently, they seem to think they do.

There is a huge lack of understanding for many people suffering from not just Trigeminal Neuralgia, but many other forms of chronic pain too.

People often suffer in silence because the feel nobody listens or believes them.

This is why we NEED awareness about Trigeminal Neuralgia. We NEED people to believe us. We NEED people to at least try to understand.

So how can we do that? How can we explain the unexplainable?

How can we make people hear those two words Trigeminal Neuralgia and immediately understand what a person is dealing with?

For a start, we need to describe the pain, perhaps using graphic descriptions, so that people will understand. It can be done. After all, we don't have to break a leg to understand how painful a broken bone can be. 

The following are some quotes from some facial pain sufferers on how they describe their pain.

• I sometimes feel like there is a sharp knife between my teeth slicing through my gum and right up my cheek. My cheekbone feels like it should have a huge bruise on it. For a long time, I was forever checking in the mirror because I was sure there must be a bruise there. Sometimes my pain builds up and builds up until it feels like my face and head will burst from the pressure. It is as if my head is in a vice, which is being turned tighter and tighter.

• Feels like a hot ice pick stabbing my eye. It is like I am being tazed inside my mouth. I get sharp stabbing pains. Sometimes achy/bruised feeling and an itchy gum. 

• When it feels swollen and painful it feels like I have been hit with a baseball bat. And the electric stabs I refer to as "zingers" stabbing in my eye are continuous, like it is being stabbed, pulled out and stabbed again, etc. And I get a vice gripping pain behind my ear.

• Mine is the burn of a blowtorch on my cheek and around my eye, after it has been scraped raw by a straight razor. Then at times the knife stabbing above and below my eye, trying to gouge my eye out. Also suffer from the pain when eating. Just one bite of a salad that I have already taken the chill off, from putting it in the microwave, and shooting pain from my teeth through my head.

• Imagine you have an abscess under one tooth. Now imagine that you crack the one next to it, right down to the roots. And then some idiot hammers a nail through them both. Now multiply that by every tooth on that side of your jaw. And sometimes both upper and lower jaw, and round your eye socket. Occasionally on both sides. The pain comes and goes, in waves, lasting long hard minutes at a time, up to 100 or more times every day. For years. 

• On the TN side of my face, I am densely numb. My tongue, lips and teeth, the area around my eye, eyelids and eyeball are all numb to the touch, as is the area of my upper lip and out from it around and to my chin. These areas burn like a 3rd degree burn all the time. When I blink my eyelid feels pinched. My cheek and forehead aches deep inside. My teeth on top are numb but feel like they are being pushed on all the time. Reminds me of the way my teeth would hurt for a few days after my braces were tightened as a child. I get stabbing pains across my temple area and into my eye and forehead that feels like a knife being hammered in over and over several times a day, and constantly some days. Percocet helps that usually but only takes the edge off the pain. Makes it bearable. My head aches like it is being tightened in a vice from the base of my skull up and across my forehead. I can feel my heart beats as pain in my head and it feels hot. Sometimes my scalp feels like it is being peeled off exposing all the nerves to the air. Touching any place around my mouth feels like touching a raw nerve. I get stabbing pains from the top of my forehead into my area so bad I flinch and squeeze my eye shut. My eye waters all the time. This is my every day existence. This is my life.

• Right now my eyeball is burning and feels like I'm giving birth through it! Plus my jaw is freezing cold, which is often how I feel pain. Stabbing, burning, slicing and aching are all words I'm very familiar with. I also sometimes get a sensation of cramping and my face feels like it gets locked.

• My teeth are my main issue. A constant ache and throbbing with tremendous pressure and sharp stabbing pains. Trying to eat is agonizing.

• Sometimes it just plain hurts so bad you cannot tell what part is affected and what is not, it just goes on and on until it all hurts. I told my daughter last night, that it seemed like I had broken all the bones in my tongue.

• I have just been diagnosed with TN. Had a tooth removed last week cos I thought I had toothache. It's a constant throbbing, piercing, stabbing pain behind my eye, ear and jaw/neck.
• My face constantly feels some level of burning, sometimes the heat is on low, other times it is like a blow torch on high, welding my skin to the bone.  There is a vice grip-like pressure constantly loosening and tightening at random, but always present.  My scalp feels like needles are poking me, and it feels like the corner of my eye and the corner of my lip are being pulled back.  When the pain flares up, it feels like someone is jabbing an ice pick in my ear, and like there is an electrical storm in my teeth and gums, striking frequently yet randomly and the level of pain is blinding.  At my worst, I cannot speak, I cannot walk, I can hardly move at all.  The most painful episodes happen at random; you never know when it might strike.  If a slight breeze hits my face, or a cool air contacts my face; talking, chewing, brushing my teeth, leaning forward…or sometimes doing nothing at all, an intense pain ensues.  This pain is debilitating, at best, and at worst, it destroys my quality of life. 

'Broken Mind' by Magdalena Esmailzadeh

This painting has been used with kind permission from the artist
Magdalena Esmailzadeh

To see more of her work, please visit  http://medeasafir.deviantart.com

Sometimes people don’t explain their pain because they think non-sufferers will not understand anyway.....but they never will understand if we don’t try to explain it.

Sometimes people feel it takes too much energy and gives too much pain trying to talk about it to explain. If that’s the case, print off some information so you can easily pass it on. We have printable information files on our awareness page. 

• What is TN? Information poster

• Pain attack and Info cards

As sufferers, we are the only people who can really make people understand.

We need to make people listen to us.

Fire, by Allison Ramirez

There is a fire burning inside of me

A fire that no one else can see

An ornery persistent smouldering burn

Takes away the peace for which I yearn

There is a fire burning inside of me

A fire no one else can see

Burns through me in every way

Burns through each and every day

This fire that burns inside of me

This fire that only I can see

It sets my nerves aflame

Leaves me moaning in pain

This fire that burns inside of me

This fire that only I can see

What chaos this burn does foment

It makes my life a living torment

This burning flame inside of me

This burning no one else can see

Turns my pain into passion

To beat this pain into submission

There is a fire inside of me

A fire that shines so you can see

This burning pain has had to fashion

A life of strength and compassion

This fire that burns inside of me

This fire that I hope you can see

From tears and pain like lashes

Like a phoenix I rise from the ashes

Clothed in the fire that burns inside of me

Burning so everyone can see

Is a person nurtured and forged in pain

Transformed into something new again

There is a fire burning inside of me

A fire that burns for all to see

A fire that burns away the pain

A fire that gives me my life again

A fire of strength and compassion

A fire for life, love, and passion

Allison Ramirez

03/09/2014

Treating Trigeminal Neuralgia

We have made some files containing information about some of the treatments available for Trigeminal Neuralgia. These are on our Facebook awareness page (www.facebook.com/endTrigeminalNeuralgia)

The links are below. If you have gone through any of the procedures, please feel free to leave a comment in the comment box on the appropriate file. Your experience may help someone else make a decision about their own options.


MVD (Microvascular Decompression)

Percutaneous Procedures (Balloon Compression, Radiofrequency Lesioning & Glycerol Injection)

Gamma Knife

Also, we have some info about meds here and a file with tips on living with TN here

It's A Pain In The Face!

I wake up in the morning, and straight away I feel it and I just think...here we go again, another day with this pain.

From that moment, until I next fall asleep, it’s there.

I am on high doses of meds to try to keep the worst at bay. They help, though some days it doesn’t seem like it. My pain is there every day. Every single day.

Sometimes it’s there in a niggling kind of way. Burning or a bit achy or tingling. There....but I can try to forget. Not completely forget it. I can never do that. But I can live round about it, just being careful about what I eat and drink, careful about what I do so I don’t antagonize it.

But sometimes it’s there in a way I can’t forget it’s there. Feels like a knife is ripping up between my teeth, my teeth being pulled and twisted. My eye hurts....sometimes just aching, or pain in the corner, other times as though there are knitting needles being stabbed in it. My forehead and cheekbone feel so painful as if I have just banged against something. As if there is a huge bruise and I am pressing on it. Sometimes my head feels like it is being squashed. And every now and then, the pains will just surge. Sometimes the pain just suddenly comes out of nowhere, for no reason. 

Sometimes it feels too painful to breathe. Breathe in through my nose, and it's as though the air shoots right up my nose and slices through my head. Breathe in through my mouth, and the air hits my teeth.

I can get pain in my teeth, as though I have just put a live electric cable into my mouth. It’s as though it just sizzles all the way down every tooth to my chin, then along my jaw.  Thankfully, the Tegretol has controlled that type of pain to a degree.

I have no choice, but live with it. I try to make the best of a bad situation, but some days are definitely harder to deal with than others.

Smiling hurts....but I do it. Laughing hurts....but I do it. I try to enjoy doing what I can, rather than cry about what I can’t. So I can’t eat ice-cream or spare ribs, but I’m not going to cry about those things. I know there are things I can eat. And on the really bad days, I just thank my lucky stars that I have a caring husband who makes me something to eat, and says, ‘You need to eat....I know it hurts, but you really need to eat.‘

Every day of my life revolves around my pain. I have other pain too, not just TN. Although there is nothing just about TN.

But what can I do?

Sit and cry all day, or try to make the best of a bad job?

I try to choose the second option.

E.Sirrell

Would you like your story on the End TN blog?

If you live with TN or another form of facial pain, or if you are friend, relative or carer of someone with TN and you would be interested in sharing your story with others, please send us a private message on our Facebook page www.facebook.com/endTrigeminalNeuralgia 

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


 

A Christmas Wish

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.

A thief in the night….

There is a thief that came in the very dark hours of the night. He came under my door as a black vapor I was sleeping so peacefully, so happy. He entered in the air I breathed. As I slept he went to work. He snaked through, tearing veins here and nerves there. My brain became his playground. Oh how he enjoyed it, the damage of it. Oh how he laughed when he saw the unforgiving pain he gave me. Then he moved to my emotions those where his favorite seeing how close he could push me until taking my own life. When they came to catch him they thought he had left. However he was still hiding very deep inside waiting to come out again and cause mischief. He stole my life; he stole my family, friends and my job. He stole how I enjoyed the wind on my face or an ice cold glass of tea on a hot summer day. He stole the feel of the human kiss and the caress of my face. Sleep is my only release, there I can have the life I once had...there is no pain there but in that sleep I know he may be waiting, waiting to come out and play. Then he smiles as I am awake and the pain begins all again

By Lori Bowen

Living With Trigeminal Neuralgia Can Bring Out The Creative Side

As the title says, we often see people writing poetry, prose, drawing  or painting. They make jewellery, they make cards, they just get creative.

Maybe it's a way of taking their minds off the pain. Maybe it's therapy to them. But whatever the reason, we feel it is too good not to be shared. So today, we have a couple of poems for you.

"Sitting Here"

Sitting here with my head in my hands,

The pain is so intense I can't even stand,

TN is my worst enemy, its never a friend

I wish I had a magic wand

To make this pain end, 

But I am a survivor and 

I will fight my way through,

The pills and the pain

I swear I will beat you...

You may be my enemy, but

You will not beat me, it will not be the end

As I gain all my strength from my

Family and friends

By Nicola MacKenzie

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"Waking Up"

I wake each morning not knowing what the day will bring.

Will the pain be low or debilitating?

Will I be able to do all the things that Mommy's do

or fight horrific pain the whole day through?

Will today be the day that I am pain free

or just another day in misery?

I'm so sick of pain controlling my life and

affecting my ability to be the very best mommy and Wife. 

I'm sick of not being able to enjoy this life

that God has given me this second chance at.

I'm sick of the doctors saying I now have this or that!

But we all have to fight even when we are weak.

Take the worry out of our loved ones eyes when they kiss our cheek.

This disease won't break us no matter how much it tries. 

Just you wait and see, Some day a thing of that past will be our painful cries. 

We may be down right now and feeling like we just cant take no more of this pain

and having to live this way.

Our pain free days are coming. God is listening when we pray.

By Dawn Gravitt Earwood

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So does living with pain bring out your creative side?

If it does, please let us know.

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?