HOPE, No ... Give me TIME

It has been a few days since I wrote anything, and with good reason. I have spent the past few days dealing with pain and disappointment of yet another treatment option not working by trying not to think about it at all, finding distraction where I can. This has me thinking about the word HOPE. I hear it on a daily basis now, " I hope you are feeling better today", "We hope that the new treatment or surgical procedure works", "All you can do is have hope and faith that it will work out."

Early on in the process of trying to find support online from others with Trigeminal Neuralgia, I found out that chronic pain sufferers use the word HOPE as an acronym, Hold On, Pain Ends.

Really? How?

How is this pain going to end? How can this pain end when there is no known cure or long term treatment, yet? When healthcare professionals question our symptoms? When we are treated as drug seekers just because we go from one doctor to the next to try and get relief? When trying to find help requires time and finances that we don't have anymore?

How am I supposed to be positive in the way I think about how my life has changed when those changes have forced me to give up on dreams and aspirations for my career, friendships and relationships? How can I hold onto HOPE when I keep on being shown the door as yet another surgeon or specialist says, ' sorry, there's nothing else I can do?'

Every time I have asked myself these questions in the last week, I think about something I heard. A short while ago, I watched an episode of "Grey's Anatomy" in which one of the characters has been diagnosed with a supposed inoperable brain tumor. Now I know that the medicine on the show is not exactly science and don't watch it for that, but rather as a show I really love. What hit home in the episode was a monologue by that character after being told that a colleague felt that she could successfully remove the tumor: "Can you name the single worst most malignant symptom of terminal cancer? It's hope. It's recurrent, and it keeps creeping back in no matter how many times it gets ripped apart … And every time the hope goes, it takes chunks of you with it, until you can only find comfort in the one thing that you know you can count on: that this thing is going to kill you."

Please DO NOT think that I am equating Trigeminal Neuralgia to terminal cancer.  The point I am trying to make is that HOPE, for me, is like that. It's the worst possible thing I could have right now. 

Do you know why? 

I have spent thousands of Rands seeing specialists, taking medication, having tests, having two surgicial procedures in the past year. With each Rand spent, with each doctors visit, with each test or procedure or new medication prescribed....do you know what came with that? Yes, HOPE. Now, after both surgical procedures have failed to relieve my symptoms, even for a single day, I can tell you that I do not have HOPE. I cannot Hold On until this Pain Ends. If I did, I would probably allow myself to sink into a serious state of depression that would allow me to reach the point of submission to my pain and ignore my guilt about wanting to end it all. If I continue to hold on to the HOPE that the post-op visit to the surgeon tomorrow will bring me anything more than a " well, I told you there was a chance it wouldn't work" coming from across the table...then I am an idiot. I would be an idiot to think that being HOPEful that this pain will end is going to be around the corner.

So now what? How can I get up every day and go about my life? Well, I don't know. I don't know how I get up and how I will go back to work next week. I don't know how I will find the strength to make it through the next bad attack. What I do know is, I'm still here. Even if the rest of the world (i.e. my friends/acquaintances/colleagues) has become tired of me sharing my story, of raising awareness, of 'complaining' about my pain....my family is still here. We have adjusted to a different way of living. We are pushing through the difficult times and emotions this causes for our daughters and for our marriage. I'm still here. I don't know how, but I am. 

One day, I know, I will again find the courage to fight and look for another option in my treatment. Today though, that is not going to happen. I need time to adjust to this new level of pain. I need time to deal with the fact that my HOPES have been shattered yet again. 

So with this I say, give me time. This Is Momentarily Excruciating, but those moments are coming in thick and fast right now. So give me TIME to deal with it. I may not respond to messages or calls, because it is hard for me to respond to a "how are you" with an " I'm fine/ok".  I just need TIME. 



 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

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