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

Frustrations, Irritations and Despair

I've been thinking about so many things to write lately but often just get to where I have clicked on "new post"  and then close the browser again, only to spend a few minutes reading and commenting on the Facebook posts in the support group I belong to. Every time I do that, what I see and feel in almost every post is either a sense of frustration, irritation or despair. I think the reason I continue to go back to the group even on the very bad days where all I want to do is sleep, is because I can relate to almost every post.
The question comes to mind though, if all of us are experiencing this disease in a different way and yet can all identify with each other, how can there not be a cure? Why is it that the medical profession seems to be putting a makeshift bandage on something similar to a gaping fracture?
Trigeminal neuralgia, hard to pronounce for many and even harder to understand in severity by most, creates a sense of despair that is difficult to describe. Add in an extremely stressful situation or even just normal every day stresses, and the ability to deal with even a small attack becomes severely compromised.

Each day that I live with this disease I am becoming more and more frustrated with myself. Frustrated that I am unable to function at the level and efficiency that I did previously in my career and research aspirations. Frustrated that I am so dependent on my family, even for the little things like being able to drive to the shop or work. Frustrated with the endless doctors visits, well-known specialists looking at you with that " I really don't know what to do" look, expensive tests, even more expensive medication that doesn't do anything to decrease the pain, etc. etc.

I am irritated by the little things too. Irritated with my body for being tired all the time because I am in pain. Irritated that the pain levels increase in direct proportion to an increase in fatigue. Irritated with the insomnia that I have which is making me more tired which is making me more sore, etc. etc.

Finally, I find that I have a moment of despair at least once a day. It's not the despair you feel when you are depressed. This I do not say lightly, as I have suffered from clinical depression in the past and been successfully treated for it. This is a despair that comes with knowing that there isn't a cure. A despair that deepens when every few days you have an attack that is so much worse than anything you experienced up until now, even when you thought you had reached your limit the last time. A feeling of despair when you have to start making arrangements to limit your working hours or decide if you can even continue working before the age of 35, knowing that you will probably live for decades after that with the pain increasing.

This may seem like a very morbid post, but honesty and a fairly simplistic way of explaining what I'm going through is why I started this blog in the first place. It's the only way I know how to share and, at times, process what I am really experiencing. My message today is for those who come into contact with someone with a chronic illness. Please, please, please, try to understand that there are times that the person may be at a breaking point. They may be experiencing any one of these emotions or all three at that point in time. So when they seem irritable, frustrated at a seemingly silly situation or having what you may think is a pity party...... remember, this is a cycle they are going through often, one that even when they are looking a bit better, or smiling, or active, is always just beneath the surface. A squeeze of the hand or arm, an offer to listen or a simple "we can talk about it later" could be all they need.

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