FATIGUE

Dear Healthy Person,
Congratulations. You are worth 16 of me.
You can go to work eight hours a day, five days a week.
I can work half an hour a day. In three, ten minute bursts.

You sleep eight hours and wake refreshed.
I need to sleep ten to twelve hours.
You can go out for dinner, on to a concert, and back to someone's place after for nightcaps.
I can meet a friend for a quick coffee.

If you do more, push yourself to your limits, you get tired. You need an early night, or an afternoon nap to recover.
If I push myself, my body shuts down and refuses to move. My mind shuts down and refuses to think. I need a week of early nights and afternoon naps to recover.

Back when I was you, Healthy Person, I used to think tired meant a lie-in on a Sunday morning, after a busy week at work, and a hectic Saturday shopping and cheering the kids' on at weekend sports.  It meant a cup of tea, feet up and a snooze on the sofa at 4 o'clock, after a long weekend entertaining.  It meant feeling like the wheels are falling off because the baby was up again at 11pm, and 2am, and 4am, and you haven't had an unbroken night's sleep since she started teething. It meant aching joints after a day gardening, or cycling, or mountaineering, that a long soak in a hot bath and a good sleep would soon cure.

Now I am a different me. A me with a chronic auto-immune and pain condition, that can't be cured, and can barely be managed.  Part of the package is fatigue. And thanks to fatigue, I am a sixteenth of me.

This is what tired means now: getting out of bed and getting dressed; or having a shower and washing my hair; or reading for ten minutes; or emptying the dishwasher and putting the dishes away; or making coffee and breakfast. Four years ago I did all these things between getting up and going to work, as well as walking the dog, putting the rubbish out, making my lunch and putting a load of laundry on. In an hour and a half, I could achieve more, with no weariness, than I can now in a day and a half.

Fatigue doesn't mean I can't do anything.
But everything has to have downtime allocated. My day has to be measured out into short bursts of activity followed by long periods of rest or sleep.
If I have a shower in the morning, I rest an hour before doing the dishwasher.
If I spend an afternoon with my grandkids, I rest three days before meeting my best mate for coffee.
If I have a deadline for writing a short article, I start work on it at least a week before.
If I don't rest, my body does it for me. It collapses.

Sometimes I forget.  I wake up in the morning and I feel fresh, energetic. I jump out of bed, grab my clothes, head for the shower. I sing in the shower and plan my day; all the household tasks I need to catch up on. An afternoon at the park with the grandkids. Make dinner for friends. By the time I'm drying myself, I am so tired I barely know which way round my knickers go. 

This is the reality for people with chronic illnesses.
We are one-sixteenth of healthy people.
One sixteenth of the people we used to be.
One-sixteenth of the people we want to be.

So congratulations, dear healthy person. 
I'd hug you, but I don't have the energy.

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 

End Trigeminal Neuralgia Challenge

New Patients and Awareness Advocacy

We always try to encourage raising awareness about Trigeminal Neuralgia and other Facial pain conditions. However, raising awareness is not for everyone. Living with a chronic illness is a huge deal, and often, just living with the condition is more than enough to cope with, without feeling any pressure to be involved in awareness. People have to do what is right for them.
The following article by Jordan Riggs may help people to understand that it is ok to just sit back and take care of yourself. You must always put yourself before awareness.

A beautiful painting of a pheasant by Jordan

Jordan is an artist and writer in southcentral Alaska.  She currently lives with Trigeminal Neuralgia, Gastroparesis and Chronic Intestinal Pseudo-Obstruction after sustaining nerve damage from nearly a decade of thyroid cancer treatment.

Opinion: New Patients and Awareness Advocacy

by Jordan Riggs

You leave the doctor’s office, stunned at the news your physician just shared.  The blood tests, the imaging scans, the doctor’s examinations: all have come to the same conclusion.  The official diagnosis is the one disease that you were terrified of having.

The next few weeks are a blur of learning how to properly manage the monster that you’re suddenly having to share your body with.  New prescriptions with awkward-sounding names start popping up in your medicine cabinet.  Appointments to referred specialists are scheduled, then re-scheduled to accommodate the doctor’s choice to extend their vacation.  You struggle with how best to notify your employer about the new diagnosis, as well as the long-term prognosis: should you warn them about possible deterioration in your job performance due to the disease’s symptoms and medication side effects?  Or ‘play it by ear’ and hope that they won’t notice?  Some family members are supportive, while others question the legitimacy of the diagnosis and suggest that you get a second (or third) opinion.  Friendships are tested as socializing abruptly transitions from fun to burdensome.  When the disease’s symptoms (or the medication side effects) blatantly affect you, oblivious strangers chime in about the latest fad diet they’re convinced will cure you.

The weeks turn into months.  Some longtime friendships have gradually faded away as other relationships are revived and strengthened.  Family members at home have adjusted as well as can be expected, and other relatives suddenly take you very seriously after they looked up your diagnosis online.  Work is challenging, but you’re regaining your old rhythm despite fatigue from the medication.  People start using words like “tough” and “brave” to compliment you, but you don’t feel that way.  You simply feel like you’re surviving, nothing more.

You make the decision to reach out and connect with people who know exactly what you’re going through.  You discover that a support group meets at the local hospital, or you find a group on Facebook with people from all over the world who have your same diagnosis.

Fundraisers.  Colored ribbons.  Tatoos.  Blogs.  5K runs.  Pleas from other patients to write lawmakers to demand more research for the disease.  Reminders of important upcoming dates to spread, spread, spread the awareness.  Organizations, associations, celebrity spokespersons.  It’s all so inspiring and overwhelming at the same time.  Navigating this new chapter on your life has already consumed so much of your time, and now you feel under pressure to become a walking, talking billboard informing the world about your illness.

In the age of social media, the peer pressure for patients to become advocates for their respective disease is intense.  Are you the type who relishes the opportunity to color your hair the same hue as your illness’ ribbon color, using your appearance as a catalyst to educate the public about your disease?  Awesome!  But what if you’re the type who prefers to only occasionally discuss your health issue, and prefer to blend in with healthy people and live normally?  That’s okay too!

As patients, successfully managing our illness is to be true to ourselves and live with our disease in a way that benefits us the most.  There is no “right” or “wrong” perspective regarding your very personal journey.  An unspoken obligation seems to exist that pressures new patients to jump on the awareness bandwagon.  However you choose to engage (or not engage) in these activities is up to you, and your choice doesn’t make you a “good” or “bad” patient within the community.  When living with a life-altering illness, self-awareness trumps public awareness.  Your only "real" job as a patient is to take care of yourself.  Expecations placed on you are just that...expectations.

So whether you’re making art for an upcoming fundraiser - or are trying to come up with clever ways to avoid talking about your disease - keep it up.  Stay true to yourself.

Dr Kenneth Casey MD

There are so many facts on the internet about Trigeminal Neuralgia, and sadly many of those facts are wrong. The problem is that people don't realise they are wrong and believe them. 

The book, 'Striking Back', written by Dr Kenneth F. Casey MD and George Wiegel, is considered to be an excellent point of reference for any facial pain sufferer, with correct information about conditions and treatments.

Dr Casey, who is on the medical advisory board of the Facial Pain Association, is concerned that many patients and caregivers believe they have a bleak forecast when they read some of the information online. He has very kindly sent us the following statement so that we could publish it on our blog.

Neuropathic facial pain has many different faces, of which trigeminal neuralgia is only one.  When we first hear the diagnosis of trigeminal neuralgia, most people go "What the heck is that?"   As people read about it, the material in print can be sometimes very scary and daunting.  Unfortunately as with most situations, most of the stories online and even those from people in support groups represent the patients for whom a cure has remained elusive.  However, if you read carefully between the lines, many of the patients and many of those that you never come in contact with had the diagnosis, received appropriate medical therapy, in some cases chose to go on to surgical therapy and are living pain-free.  We have over 9000 cases of which 75% of the patients have little or no pain following surgical or medical procedures.  Similar numbers exist in France with a physician Lyon; similar numbers exist in Italy and similar numbers in England.  For those who aren't familiar, there is a very active support group in Australia where surgical care is a little more difficult to come by.  They have a large group of people who with medications, and especially non-pharmaceutical/non-prescription medications such as high doses of vitamin B12 and the like, are living quite comfortably.

This is not to say that there are some patients who suffer terribly and for those patients, the members of the Medical Advisory Board of the Trigeminal Neuralgia Association have pledged a good deal of their time and careers towards developing additional procedures which may be of help.  At the same time, the trigeminal neuralgia foundation is currently undertaking groundbreaking research looking at the genetics of trigeminal neuralgia and how those genetics may affect the treatments that we can offer to patients who suffer from this particular form of neuropathic pain as well as other forms of neuropathic facial pain.  Starting in 2004 in France, a nonsurgical/noninvasive procedure known as transcranial magnetic cortical stimulation was utilized in patients with neurogenic facial pain of all types and specifically trigeminal neuralgia with significant relief obtained.  Owen was another researcher in the United States who found the same results a year later.  Recently the group in England showed the transcranial magnetic stimulation with a device that is a portable unit has shown that this transcranial magnetic stimulator works quite nicely for migraine pain and now have extended their work to neurogenic facial pain.

The message is that much work is being done.  

New non-drug related therapies are developed.  Different drugs, up to 18, have been tried with success ranging from 50 to 75%, and interest in finding the basic mechanism in dealing with it has never been higher. 

Kenneth F Casey M.D.

With thanks to Dr Casey for his input.

Striking Back is normally available to purchase from the Facial Pain Association or Trigeminal Neuralgia Association in the country where you live.
Those websites can be found in our 'useful links' tabs on the right hand side of this page.

Meet Athena - An Inspirational Young Lady

Every now and then in life, we meet people who amaze us. Sometimes we are in awe of their strength, courage and sheer determination.

One person we are lucky enough to know within the world of facial pain, is a very inspirational young lady called Karla Gudgeon,  or Athena, to her friends.

In her own words, here is Athena's story…..

Hi everyone,

My name is Karla Gudgeon, though my friends call me Athena. I am 22 and have had atypical and typical trigeminal neuralgia for nearly five years now. I also have recently been diagnosed with muscular pain on the left hand side (due to eating and using my jaw lopsided for so long) and allodynia, or hypersensitivity. The latter means that even a tear or a brush of wind on the affected area can trigger immense pain.

I am a student at Lancaster University in England - this means the world to me as, for the first two years after I gained the TN, I couldn't do much and had to defer my university place. Many of my hobbies were very active - archery, sword fighting and dancing to name a few, which obviously became more painful and less feasible to do when the pain level was high. 

After six months of moping around I discovered something I could do - card making. This hobby really took my mind off the pain and allowed me to do something worthwhile.

I work for a charity called the World Owl Trust in Cumbria, England as a volunteer and I started selling the cards to raise money for them. This quickly escalated into a bit of a cottage industry making not just cards, but notelets, bookmarks, magnets, coasters, pens and lots of other merchandise.

Over time this has raised thousands of pounds for the charity and made me feel that I wasn't letting trigeminal neuralgia ruin my life - in other words I could still do something worthwhile.

I used to do regular craft fairs where I had a stall selling all my merchandise and raising awareness. The vintage themed fairs were especially fun!

After two years I managed to get back to university and have thoroughly enjoyed it, although I must admit the pain has made things extremely difficult. My friends have been wonderful though, recording lectures I could not attend and helping me get around campus in my wheelchair when needed (I also have the medical condition Ehlers Danlos Type 3, or hypermobility syndrome.)They have been remarkably adaptable at coping when the pain level is so high it sends me unconscious, a distinctly irritating and debilitating survival mechanism which has caused a fair few separate injuries not to mention the loss of my driving license.

My TN is unusual in that it seemed to be caused by trauma, not the usual blood vessel being too near the nerve. When I was 18 I had an operation called a lower jaw osteotomy, which aimed to bring my lower jaw forward so my teeth could meet up and I could bite properly (I really struggled to eat before.) I was assured that no-one had ever regretted the operation and there was a one in a million chance of other side effects besides numbness to the lips. Unfortunately, I turned out to be that one in a million - well someone has to be I guess. Either way, possibly due to the Ehlers Danlos, the left hand side of my jaw failed to heal properly and to this day bleeds and bruises sporadically which, as you can guess, annoys the neuralgia no end. My neuralgia centres quite low down on my face, in the centre of my cheek and radiates out in a sort of star shaped pattern when the lightning bolt pains come. I'm sure many of you know exactly what I mean! The atypical pain is constant, 24/7 and usually takes the form of a very sharp ache. 

When I discovered the charity The Facial Pain Research Foundation I decided to combine my hobby and my problems. I will be making cards and other merchandise for the Foundation to sell and raise funds which will hopefully help us conquer this terrible condition.

Another TN sufferer, Jordan Riggs, has kindly allowed me to use some of her beautiful photographs for new designs and I have managed to receive permission from an excellent storm photographer to make lightning themed merchandise (very appropriate I'm sure you will agree!) I hope to sell some of these products online by the end of the summer via ebay and/or etsy - look out for them - all profits will go to the FPRF. 

On another positive note, against all odds, I have now finished my degree and have attained a first (despite my appalling attendance) which was a great shock! It hasn't sunk in yet. I am now going to have a year off to recover as the degree has left me pretty exhausted. I also may have to have some sort of operation to control the TN pain. I am going to see a doctor in London and I am hoping she may be able to give me some advice! I am a bit more hopeful than I have been anyway. I am also currently undergoing physio to help the muscular aspect and the allodynia. It's painful in the short term but will hopefully help in the long run. Then I will see what I am left with! I had a wonderful graduation last Friday.

I am also doing a sponsored abseil (a slightly strange graduation present from my father) for the Facial Pain Research Foundation to try and raise more money to find a cure. We have reached over £200 already! I hope the pain is low enough to do the abseil some time in August. It would have been Monday 21st July but I sort of sprained by wrist last week so it has been delayed a bit! If you wish to sponsor me you can contact the FPRF directly at their website  or donate direct to the FPRF with paypal via ebay.com here. You can also use my gofundme page gofundme page but be aware there are some fees involved (to the charity not you) on that, whereas there aren't on the other two options.

Together lets try and combat this terrible disease!!

Good luck to all of you and best wishes always. 

Athena

Congratulations Athena.

Hope you can enjoy a less painful year out of your studies.

Thank you so much for your fundraising efforts and for letting us share your story.