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