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

The sentence is life........

So you're wondering what Trigeminal Neuralgia means for me? Well, it's something like this:

My brain is the Judge

My head the courtroom 

My body is a prison

And my sentence is " Life"

This prison provides a toothbrush made of steelwool

At times they're kinder and offer me a piece of sandpaper instead.

Allowed to exercise daily in the windy courtyard

Equivalent to rolling around in electrified fencing

I get to take showers

A shower of nails

And bed time is often

Being strapped down on a pillow of fire ants and barbed wire to caress my face.

I get to see my family daily

Their hugs and kisses are like fire

I cut off the offensive hair, that had turned to knives

But still, the prison-issued clothing, a scarf, will continue to torment me, brushing ever so gently against my cheeks.

My question is....

What is my crime?

What have I done to deserve no possibility of parole (medication that works)

Why don't I have a chance of getting out for good behaviour (surgery)

Or am I to stay in this prison with the chance of my sentence being changed to death?

For now, 

My sentence is life

My prison is my body

My head is the courtroom

And my brain, the unfeeling, unsympathetic judge.

My sentence is life.

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 cost of chronic pain diseases

I am writing in extreme pain right now and because of the pain I cannot rest/sleep. Laying down has become a trigger for my pain and as the pain on the right side has started increasing, so have the severity of the attacks and horribly, the bilateral simultaneous attacks. When I lay down to sleep/rest, it just gets worse. It is really a horrible cycle where fatigue increases pain and pain causes fatigue. But this is not what is on my mind right now. I have posted and spoken of the emotional and physical cost that we pay when we have this disease. However, there is another cost that is frighteningly real and results in stress that many can't understand. In order to diagnose someone with something that is not that common, the result is usually that we visit doctor after doctor, specialist after specialist and have many, many, many tests. These are all incredibly expensive. Even if you live in a country where there is health care available for those who cannot afford health insurance, the costs of travelling for all of these is enormous. Once we finally receive a diagnosis, the medication cycle begins. For Trigeminal Neuralgia, there is no known pharmaceutical treatment that fully controls or halts the process of the disease. Currently, the first line of treatment is Tegretol. This is an anti-convulsant medication that is used primarily for diseases such as epilepsy but also for pain that is neuropathic in origin. For those of us who are not able to tolerate this particular medication, like me, or if it is not successful in controlling the pain, a wide range of anti-convulsant medications and anti-depressants are the next step. Then they start adding narcotic medication.The next step, not an option for me right now, is surgery, which obviously has cost implications as well.

I am like many of those who suffer from TN, in that NONE of the options available to us are doing anything for the pain. It is horrific and incredibly frustrating at the same time to fork out thousands (and I am not exaggerating) of Rands (our South African currency) every month for something that doesn't work.

The loss of income from not being able to work is something that I, thankfully, have not yet been burdened with....but I know it's coming. I have already had to cut down on work hours. Problem is, that because I am no longer able to drive safely, I am dependent on colleagues or my husband to take me everywhere I need to go, including work. With petrol at its current price, the extra driving that everyone has to do adds to that financial burden.

A word of advice, if you are fortunate enough to be relatively healthy right now. Don't rely completely on your medical aid or health insurance. Save up a little every month. When you get to the point where all your medical aid funds are depleted in the first month of the year and you have to continue to find answers and help, any extra money is valuable. When you have to pay over R1000 for just one of the 5 + medications you are prescribed, just to function or at least to be able to get up and go to the bathroom, you learn how quickly we have become accustomed to having money for basic necessities.

I can't end of this post without thanking my family and friends again for their support. The support from those who love you, even if they can't fully understand what you are going through, is the ONLY way to deal with this.




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

Just one of those days....

Something I find difficult to explain to people is that there are good days and bad days with TN but a good day doesn't mean I don't have pain or that I am " better." In the human vocabulary and understanding, good usually means good....right?

Actually no. For me, good means that I slept more than 2 hours last night, I didn't start the day thinking I should take a double dose of narcotics because I've only had 2 attacks between waking up and leaving for work, I may have survived the drive to work with only minor attacks on the one side of my face.
So when I say that I'm having a bad day.....well, it's bad.

Today is just one of those days. It's one of those days where I was up until 4:30am and then napped for about 30 minutes on and off until getting up to wake my girls up for school at 5:45am. I have had 8-12/10 levels of pain for days now and it's just getting worse. The weather outside is extremely windy, so I can't even consider going out, BUT, I have to go to the dentist after putting it off for the longest time and need to cut my hair because it's starting to touch my ear and face again, which is a trigger.

As I said, it's just one of those days. It's a bad day. This is something that those with TN and aTN (atypical TN) have to live with every day. Those closest to us start to understand, or at least I like to think so, that some days our levels of frustration with having one bad day after another becomes too much.

On " those days" I honestly cannot fathom how I will live with a lifetime of this. As much as advice and support helps many people, all I wish is that when I answer the " how are you" question with " It's one of those days".... the only response is that the person asking is there to listen if I'm able to talk without increasing my pain, or just hold my hand for a bit. I found this picture so applicable to these thoughts as anything besides a listening ear or physical comfort on those days is equivalent to any of the images below.

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