Before you throw in the towel...

Before you throw in the towel
Before you give in to the pain
Before you decide to end it all
I have a few things I'd like to say

Have you shared your love with someone today?
Did you share your story today with another who needed to hear it?
Were the last moments you had with a child/spouse/loved one spent doing something special?
Do you have an idea of exactly what contribution you have made to the lives of those around you?

Did you notice that your loving hug/touch made him smile?
Did they thank you for sharing your story and appreciate it sincerely?
The joy of that special moment, did you notice how it made the sun shine brighter?
Can you really not see that without you here, there are some people who will not be fully developed into their best selves?

So, do you still want to throw in the towel?
Are you going to give the pain the power over you?
Is the end really today, this hour, this minute?

Do you not realise that there may be one person who needs your
Love
Story
Special moment
Life contribution.......

Have I said enough?

I hope so...

  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

May the guilt be with you

I saved this post and was ready to publish when I realised I should start with a disclaimer: I am not suicidal. I am not going to harm myself or others. I am safe, I am loved, I am in pain - but it's a pain I know and am dealing with. 

Now for the actual post:

There have been moments in my journey with TN where I have felt like I wanted to throw in the towel. Moments where I knew that I was teetering on the edge of joining the statistics that have resulted in TN being dubbed the suicide disease.

Those moments have been interwoven with an undeniable, excruciating sense of guilt. There is a guilt that comes with living through something that others don't understand or can't see. Feeling guilty because you're no longer functioning at the same level you did previously. No matter how illogical it seems or how much psychotherapy you go through, this guilt is there and is difficult to ignore.

The guilt at those moments of despair is different. Its guilt that eats at you for letting your supporters down. A feeling of guilt for being weak and not being able to push through. A feeling of guilt because you know there is going to be someone saying or thinking that "this isn't going to kill you" so you should be grateful and not desperate for a way out. Guilty feelings that fester because, surely you should have been able to push through this for your spouse, your kids, your loved ones, because it's selfish to think otherwise. Guilty feelings exacerbated by the constant advice about the healing that will come through prayer or exercise or lemon water (or any other natural remedy). Guilty feelings raised up on you because you should be thankful for the advice as it shows care and support from those who offer it.

Yes, the guilt that lurks daily is exponentially greater at those low moments. Sometimes, scarily, the guilt is all encompassing. Those moments when the pain is suffocating and the feelings of guilt are low, are the really scary ones.  More importantly though, in those really scary moments, I am grateful for my husband. His support and offer of a shoulder to cry on, an arm I can dig my nails into, or 'borrowing' me a spoon to at least shower, is invaluable. I can honestly say that without that support, without him helping me fight the demon, I would find it more difficult to embrace that guilt as a means of helping me keep it together to make it through the extreme pain.

I hope today that all those living with chronic pain, especially TN, have some guilt to keep them going. If you're lucky enough to have moved past that feeling of guilt, my wish for you is that you never feel it again or at least never have to rely on it to get you through a dark moment.

May the elephant on your face sleep tonight.

  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

Fact or fiction?

I often struggle with the dilemma of sharing my personal journey versus sharing facts. Facts are good, they inform others in a way that promotes awareness and can be seen as educational. Feelings/personal journey are useful for trying to create an understanding of what it means to be living with TN but can be seen as complaining or negativity. I know I have "lost" friends who are "tired" of my social media posts or the way in which I have changed....but I will continue to share as I know that those people were never true friends to begin with. I do think though that I have neglected to personally share facts about living with TN, though I have posted on social media various links and posters to share the information, here are some of the facts I have discovered through research (actual scientific studies and not yahoo answer websites), personal experience and the sharing through support groups I've been lucky enough to find on line.

1. Trigeminal Neuralgia (TN) is a chronic, progressive condition in which the person experiences severe facial pain. The pain is most often triggered by light touch, vibration or a breeze on the face.
2. TN is generally classified in two distinct groups, TN 1 = sharp, electric shock pain that comes and goes. This pain can last seconds or minutes with some people experiencing up to 100 attacks per day. TN 2 = also known as Atypical Trigeminal Neuralgia is almost always a constant, deep, burning pain that "flares" in intensity but almost never goes away. 
3. The literature says that TN is generally a condition that affects those with an average age of 50 or older - The support groups tell a different story with the majority being in the 20-40 range. This year the international awareness day for TN is aimed at raising awareness of the children and teens with TN, that should say enough about how outdated the stats are.
4. Those with TN have to go through a long process to receive a diagnosis, often having teeth extracted and diagnosed with migraines or Temporal-Mandibular Joint pain before finding a diagnosis. There are very few of us who have this diagnosis who have not been ignored, called liars/drug seekers/hypochondriacs in the process. The health care system, regardless of country, is not equipped sufficiently to deal with conditions without clear, curative, protocols for treatment, that is a very sad, very true, fact.
5. Treatment usually begins with anti-seizure medication (Tegretol is the first line of treatment for most) through a trial and error approach for finding the dosage and type of medication that provides the most relief. If and when it is not enough, certain anti-depressant medications are added as they are often used in nerve pain conditions. Narcotics may or may not be added for pain relief but does not work on its' own for most of us. Surgical options are Micro-vascular decompression (where surgical Teflon padding or a similar material is placed between the nerve and any blood vessels causing the pain), Steriotatic Radiosurgery (concentrated, directed radiation to damage the nerve), Glycerol rhizotomy (a glycerol solution injected into the nerve ganglion to damage the nerve), Balloon compression (a procedure where compression of the ganglion of the nerve for destructive purposes is done).
6. None of the treatments can guarantee 100% pain relief or relief that is lasting. 
7. Trigeminal Neuralgia has no cure; it varies in intensity for each person; it is real; it is debilitating; it is not fully understood by MANY health care professionals; it requires research to enable those who are able to help, to know what to do.
8. People with TN have and do lose their jobs as a result of the pain and or side-effects caused my medication. We are almost ALL dealing with family, friends or colleagues who choose not to accept that the pain is real or that it is affecting every aspect of our lives and as a result lose those friendships or support in the workplace. It's a difficult disability to defend in applications for disability cover due to the lack of knowledge and understanding regarding the true impact on functioning.
9. We are determined to find a cure and raise awareness, this is evident in the efforts by many to work on various events for 7 October, the international awareness day for TN.

Finally.... 10. we miss our lives that we once had. Once the progression has reached a point where no remission is in sight, we miss our work, our family events, our exercise opportunities, our simple pleasures such as taking a walk without fear of a breeze knocking us to the ground.

For those interested in more information, visit The Facial Pain Association website. This website provides updated research and support links. For those who are looking for support on Facebook, a good place to start is End Trigeminal Neuralgia a page with detailed information and testimonials regarding treatment.

  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

Life Changes

Life changes. Technically I could leave the post at just those two words and I would be making my point. However, as this is a blog and not Twitter/Facebook, I should probably elaborate.

Right now I'm sitting somewhere where sat a year ago and the year before that and the year before that. I am sitting at a Fellowship programme that I am privileged to be a part of.

Now, before you ask....but what are you doing at a conference when you just had surgery last week, it can't be that bad then, right? Well, let me explain.

This programme is directed towards improving the health professions education arena in Sub-Saharan Africa. It is a programme of like-minded health professionals who are all passionate about creating a group of educators who strive to ensure that healthcare on the continent is improved by improving the education of those who will one day provide said healthcare. The organising and facilitating group, of which I am blessed to be called a part of, are my friends, close colleagues and for some of them, my career mentors. They understand what I'm going through (to a degree) and support me by allowing me to find the joy I need in participating, albeit minimally, this year while also resting when needed.

With that explanation out of the way, let me tell you why I am so taken aback by how much life changes.

As little as 1 year ago, I was here, and loved it. I was energised. I was excited and excitable. I was driven by my passion for the cause as well as my passion for my work. I love(d) my job. I love(d) the opportunities I was presented with to help others see their potential. I was busy working on my PhD proposal, managing work matters in the evenings, calling my family at home while missing them like crazy, taking walks in the evening when the sessions for the day were done and visiting with friends.

This year, I'm recovering from surgery, though the majority of the surgery pain has gone. I am in pain, my "normal" pain, but pain nonetheless. I am tired. I participate where I can, sleep when I need to and run out of the room when I have an attack. I can't handle the 1866 emails in my work inbox and can barely handle the whatsapp messages when they come through. I struggled to walk up and down the stairs today when the vibration of my steps once again caused attacks. Even if I had a car here, I can't drive, I haven't been able to in almost 1 year. This year, I am glad to be here, just to give my family a break. I needed to give them a break from me, and that breaks my heart. I'm glad to be here to get some of the passion and energy I need, even if it's in short bursts. I am happy to be here where I am still able to say - Screw you, TN, you can't take this away from me too.

I know when I leave here next week, it will be to another doctors' appointment where they will discuss the plans to give me glycerol injections into my skull to provide temporary pain relief. I also know that it will not be the last visit or the last option they present me with.

I can't look forward to going out to a park for the last of the summer with my girls, because it's too windy and even my scarf isn't enough protection against the pain of the wind most days, anymore. I can't look forward to getting back to work because most weeks, I am only able to cope for 1 full day at work. I am slowly, but surely, running out of spoons because I'm using up, not just the ones I need for tomorrow, but those for next week, next month, etc. etc.

So yes, I could have just said, Life Changes.
But really, could it have meant what I just said?

Life changes, enjoy every single pleasure, fear, joy, hope, sadness, excitement - filled moment. One day it may change for good.

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 waiting game

Reading comments and posts from others who suffer with chronic illnesses, a lot of them rare or minimally researched, has me thinking that this is a waiting game.

I have waited for a doctor to have an opening for an appointment
I have waited in traffic while trying to get to doctors who are not necessarily in my area, but who I must go see because maybe they can help
I have waited for tests to be completed or scans to be done
I have waited for the results of the test The worst of the waiting.... waiting for the pain to hit you like a ton of bricks because someone accidentally brushed against your face, or the wind somehow blew through a crack in a window, or or or.....
Yes we wait and wait for help, for support, for answers.

 The problem with this waiting game is, we are often waiting for nothing. Seriously, if you take your car to a mechanic and wait for him to be done with it, you expect to collect your car with whatever it was you sent it in for - fixed. BUT, in this day and age of medical advances, technology, information galore.....AND a specialist having gone through a number of years of training, we wait and get no answers. After a year of trying to find answers with a number of specialists (this after years of intermittent pain), I was eventually told, "Sorry, we don't know what to do". I didn't accept that. I demanded to be referred to another doctor in another area based on research that I had done while waiting for answers.

So I went to the new doctor, more waiting for tests, then waiting for medical aid to be renewed for the new year so that I could have even more expensive tests and more expensive medication.... what happened? I waited in vain for the medication to work. This isn't all doom and gloom though, that doctor didn't give up, he said " Sorry, I can't help you but I will find someone who can." Now, that is worth waiting for. So I waited to see the new doctors who believe they can help and after a lot of back and forth between different specialists who now all want to be involved with my case because it is "interesting", and more waiting for medical aid to approve procedures, I am waiting for the next 12 hours to pass before I go into theatre. I know it will be a waiting game for biopsy results from the removal of the " growth" which they thought was fibrous dysplasia, and I will have to wait to see if they can temporarily numb the nerves and then wait to see if it has some effect.

 I will post a bit more about the actual procedure afterwards, right now though, I'm waiting for a call from the hospital. 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

No frills, no fuss, no energy....

I usually have the ability to be creative with my posts and titles. I am and have always been able to think of creative themes, or at least I think so, to describe something.
Right now though, I am tired, so incredibly tired. I can't seem to get myself to put one foot in front of the other for a while now. It is like I am walking in fog and it's not even because of medication.

Something that is very difficult for people to understand about chronic pain is the exhaustion that comes with it. To have colleagues and acquaintances equate my exhaustion and struggle to cope with their normal back-to-work adjustment period almost feels like an insult. I was on leave from work, yes, I haven't been able to work a full day since being back, and yet their seems to be little to no understanding in practice though seemingly sincere concern and support are at hand and verbally expressed.

I am almost sure that I'm not even making any sense in what I'm saying anymore. I am tired but can't sleep since laying down increases my pain. The medication has literally stopped making ANY difference. As much as I want to be positive and have faith, as everyone continues to encourage me to to do, it is much harder on this end of that encouragement than people realise. When every conscious waking hour is filled with pain, every semi-conscious minute results in restlessness and (hardest of all for me), every minute I try to function as normal human being results in hours of agony - having faith and being positive is the last thing on my mind.

It hurts. Emotionally. Physically. Spiritually. It hurts. 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

What about them?

I haven't posted in a while although I have intended to, it gets difficult to do. This is something I struggle with, the intention to do something and then BAM! TN takes all my energy and ability to function. With the festive season behind us now, I'm still struggling to recover. Having to be around a lot of people, going out at times and just being with family while the kids are on holiday has become increasingly difficult. I'm terrified that this is getting so hard to do. I love my family. I love spending time with my family. Sometimes I think that they must be saying...."what about us?" This is something that many people don'g understand about having a chronic invisible condition. I am sure that the same can be said for any other life-changing condition too. The ones we love take on so much with this because they are close to us. They understand what this is really like and what it has done to our lives. They understand that it has changed everything.

I worry that they think or feel so many things that I am now responsible for, even though I didn't ask for this monster to invade my body. What about their lives? What about the family outings to the beach, the park, a movie? What about sport days, family gatherings? Everything ends up being a case of first checking if I am feeling ok. Is it too windy outside? Have I got enough meds to take me through the day? Do we have the money to go out or do we need that money for medication or a doctors' visit?

It is so unfair on them. I spent 5 minutes helping my daughter learn to ride her bike and have had days of pain as a result. It's not fair.

We shouldn't have to deal with this, but more importantly, our families really have had a raw deal as a result.

What about their lives? What about their happiness? What about them?

I am really grateful to them for their support. They are my strength many days when I can't see a way to go on. I just hope that I am able to give them as much normalcy as possible.

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