I'm okay

There's a popular spoonie who goes by the name of Mrs Welches on social media. She regularly posts pictures and posters that resonate with me. Today I saw one that I am sharing here explaining what it means when we say, "I'm okay."

I would like to elaborate on what that means to me, since its invariably my response to a "how are you" these days.

I'm....
Overwhelmed
Killing myself
Angry

Yearning

I am Overwhelmed  by the effects that TN has had on my life. Overwhelmed by the pain, the constant, excruciating, ever increasing pain. I am overwhelmed by the decisions that I find myself needing to make regarding my life, my future, my identity. I'm often overwhelmed just at the thought of having to do simple tasks, taking a shower, brushing my teeth, opening the front door when I can see that the wind is blowing outside.

I am Killing myself daily. Not literally, but figuratively. I am killing myself just trying to work for more than one day at a time. I'm killing myself trying to push through the pain on days when the kids need me to be there for them, helping with homework, going to a performance, supporting them at an event. I'm killing myself emotionally, trying to be strong until the kids go to bed each night just to give them a sense of normalcy.  It may be hard to believe, but it is killing my soul just knowing that I'm losing my ability to fight through the pain as well as I may have done last week, because this week is just so much harder and I know that next week will be worse.

I am Angry! I am filled with rage at this body that I possess. I am no longer as angry as I was before with doctors or colleagues or people in my life for not understanding and believing me. I'm angry at this disease. I'm angry because of what it has taken from me. I'm angry because I can't sleep, I can't eat, I can't talk....when the pain is at a maximum. I'm angry that it takes from me simple and important pleasures, like physical intimacy with my husband, kisses from my kids or my parents, long conversations with good friends. I'm seriously, dangerously, angry right now. The anger obviously is the only thing that fuels me enough to go on some days, but anger of this intensity can't be good.

I am yearning for so many things. I'm yearning for the me that I was before all this started. I'm yearning for the dreams that I have had to give up on and for clarity in making new ones and having the courage to attempt to achieve. I'm yearning for a few minutes, seconds even, of relief. Most people with classic TN do not have constant pain, unfortunately, I am one of the many who do. I am yearning for a night of uninterrupted sleep. I'm yearning, and aching, for comfort for my husband and kids as every attack and flare breaks their hearts in so many visible ways. I'm yearning for a cure for all of us who suffer this horrible fate.

So if you ask me today, how I am doing. I can honestly say, I'm okay. I like Mrs Whelches description and explanation of what she means when she says it, this however is mine. My explanation can't fit onto a poster, and I believe that hers might not either. BUT, I am grateful for those like her who dare to say the things that resonate so well with all of us suffering with invisible, chronic, illnesses and pain. I'm proud to be a fellow spoonie with her and continue to make it my mission to educate and inform others about it through my own social media presence. Some days though, I'm just okay  and those are truly the days that I find it harder than most to fulfill that mission.

For my fellow TN fighters, warriors we may be, but remember, it's ok not to lie when asked how you are today, it really is ok for you to be  okay. 

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

Dear Dr X - an open letter to health professionals dealing with chronic pain

Dear Doctor X (insert other health professional as it applies)

Today I feel that I need to let you know what is on my mind. I studied and worked as a health professional and still work in that field, albeit, in education now. So before I say what is on my mind, please know that it is done with respect and a certain level of understanding of your world.

As students, you are taught the physiology and anatomy of a disease. It is impossible for you to know everything about every illness, I know that. You did however, I hope, enter this field to help bring relief to those in pain or poor health. You do this, often under difficult circumstances and with a very tired mind and body. If I may be as bold as to offer you some advice, please let me do so:

1. A patient with a chronic, rare, incurable disease needs understanding. That is a fact and imperative if there is to be any success in treatment. You may not ever truly understand the pain that this person is experiencing, and I sincerely hope you never do. But please try and understand the frustration and despair that they enter your office with.
2. You are intelligent and well educated, but that does not mean that you can assume you know exactly what all the symptoms are of this disease. It does not mean that because you were taught that chronic pain conditions may be psychosomatic, that this case is that. It does not mean that because this patient does not fit into the textbook picture of the disease, that they do not have it. Do me a favour, use the technology available to do a quick search on the research going on out there on the disease. It will help your patient to know that you are interested in finding out how best to help them way more than if you say "I have been practicing for years and have not heard of that symptom," OR "Because you don't respond to the medication decided upon 20 years ago, there is NOTHING else I can prescribe."
3. On the subject of research. Please understand that thanks to technology, many of the patients you see with these conditions, have done a lot of research. Please refrain from being condescending by assuming I am using WebMD and Yahoo Answers to find out information about my illness. I am not an idiot. I am not gullible. I look for scientific studies on a daily basis, hoping that today will be the day that someone has published a new treatment option. I am not alone in this, MOST of us do this. You may find that your patient will come to you with those studies in their bag, but unless you seem open to finding out new scientific information, that research article that was printed out, will walk out the door with the patient.
4. We are, generally, NOT drug seekers. Asking you for a prescription for a medication that has helped in the past, or helped someone else that I have come across with the condition, does not make me a drug seeker. Yes, many of the drugs we can take do have addictive possiblities, but that doesn't mean you have the right to say to me : "No, that is very addictive and WILL NOT help for your pain" and walk away. It is hurtful to hear and adds to the despair. Perhaps you have another treatment option as a suggestion. If not, please read no. 2 in this letter.
5. Your comments about maintaining quality of life to a patient who has had the rug pulled out from under them in a heartbeat is appreciated. Please though, try to understand this. Just because I am still employed or am able to look after my family does not mean that I have the same quality of life that I had or that I believe I deserve. My visits to you and many others in your profession are part of my life. As a result, quality of life for me includes the quality of care I receive from you. If that is not at a high level, if I am not longer able to work with the same efficiency I once did, if my kids have had to grow up way before their time because I am not able to do what I did for them......then I feel that I do not have a good quality of life. So to those in your profession who say " I can't do anything more for you, let's try to maintain your quality of life", please understand exactly what that means.
6. Finally, it is unacceptable, completely and utterly, unacceptable, to expect that you know more than I do about my own symptoms. Symptoms, by definition, is a subjective thing. There are signs of an illness that are objective, but only I can tell you what I am feeling. So please, I am begging you (and I've actually used these words), when I say do not touch my face to 'check my sensation', don't do it. It is excruciating. If I was able to put up with it, I would rather have my daughters kiss me on the cheek....that is worth it. I would rather have my husband stroke my face, but when you decide that you're not sure if what I am telling you about my body, my symptoms is true and you then decide to elicit the exact symptom that I have just described to you as being unbearable, don't act all surprised when I scream, cry and attempt to inflict pain on you with a slap or a kick.

Dr X, I sincerely hope that you take this in the light with which it is written. I appreciate your compassion and care for all your patients, including me. I understand your frustration at not being able to provide a quick fix for me. If you are still around and willing to be my physician even after you're out of ideas and are simply able to manage my care with follow-ups to ensure my records are up to date, I applaud you. Believe me, we go through so many of your colleagues because they simply show us the door when we are too complex for them. 

There is much more I would like to say, and I am sure that I will find the words and courage to do so one day, but for now, Dr X, thank you for your time in reading this. I sincerely hope that if there are other doctors reading it, that they are some of those who DON'T need to read these words and that one day you will also say, 'that used to be me.' Also know that it is my goal to spread awareness about what chronic pain, specifically, Trigeminal Neuralgia does to a person, so I will stand by what I have said here. I will also be working hard to change the minds of the medical insurance companies and my colleagues in the way we educate your future colleagues - So, I am not only targeting you.

Sincerely

Lianne

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

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.

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