A day in the life……

Originally written and posted 8.21.16

tn36tn

 

I’m not sure when I’ll be able to publish/post this entry as we are camping and our service is spotty at best!

I don’t want to post ‘a day in the life’ type of entry daily, as that’s not exactly why I’m writing this blog.

I do, however, want to publish some of those types of entries occasionally, because I feel like it’s important to do so; for those who want to understand what a day is like for someone who suffers with TN, or get a basic understanding of what someone who lives with chronic pain on a consistent basis goes through.

All TN sufferers don’t suffer the same.  I am only representing myself here and my personal  story, told by me, about my journey.

TN pain isn’t always the same for the same person either; there are so many levels and layers to this stupid disease.

For you, that doesn’t suffer with TN, but really wants to have a better understanding,

For you, who just found out you have TN.

For you, that have it and either don’t know you do yet, or haven’t been properly diagnosed yet.

For you, who have a spouse, partner, parent, grandparent, aunt, uncle, sister, brother, cousin, friend who either suffer with TN or chronic pain.

For me.

Here is my first ‘day in the life’ post:

Today is Saturday, and we’ve been camping with the family, (minus my oldest as she’s attending Cosmetology school in Nashville right now), since last Wednesday.

I woke up around 10 or 11 sometime, I don’t know exactly as we are on vacation!  I had also stayed up late last night with most of the kids, (teenagers), sitting around the campfire talking. We didn’t have anything planned to do for today either, so no need to set any alarms!

 

It rained most of the night last night, (and pretty much all day today too, as forecasted), so I know already today is going to be a struggle.

When it rains, including before it rains and after it rains, I normally have a harder day.

I’ve figured out over the past 20 years or so what kinds of things trigger me. Weather changes are almost always a guarantee of a harder day than usual.

I think it’s the barometric pressure, the changes in pressure in the air.

If I’m doing good, have zero pain, just had a MVD surgery, just my Fibromyalgia flares, but not my TN.

If I’m having a no pain day, but I’m not clear like described in the last sentence;  it’ll be there, enough to be like, ‘hey! here I am, did you forget about me? just reminding you I’m right here!’  It’ll be a dull aching with tingling in my jaw joint, and all set to jolt the crap out of my face if I get hit with another trigger.

Today I’m really bad, because it’s already been super flared up, especially since my last surgery a week ago last Wednesday. So that’s why I knew, not only because of how I was already feeling, but because it was raining out – I knew it wasn’t going to get any better as the day went on.

We all hung out in the camper most of the day today. My husband made every one bacon and eggs with toast for brunch.

I could only eat the egg from our brunch.

Chewing bacon!? Ya right!!!!  Not even the smell of the yummy, weakness of mine, cooking could even tempt me! No way! Chewing food? Um, heck no! Not even an option! And a piece of toast? Nope! I can’t open my mouth far enough to take a bite from it, and then we can just forget about the chewing part there too….

The kids played a lot of cards with each other. Some read for a bit, spent time doing crossword and word search puzzles.  I sat, and laid, in my bed in the camper – out in the open – getting to watch them. Getting to enjoy everyone being together in one spot, all together, and getting along and laughing! The

I went from tolerable pain to really painful a few different times during our camper day.

I can’t play card games with them, because I might get an attack during the game, where I just can not physically or mentally – finish the game. Then that upsets everyone on top of it, because they worry about me. So it’s better for all if I don’t even try.

We’d laugh today, and I’d forget and open my mouth to laugh and trigger a shocking pain on my left side. Then I have to sit there, still, teeth apart but lips touching.

If my teeth touch together it can shock me. Also when my teeth are touching together it makes it way easier to clench them and stay tense. That adds to the pain.

If the air hits my teeth, that also triggers more shocks. {~ “just sit there, as still as you can be, carefully” ~} That’s what I say to myself.

I’m scared out of my mind!

Any small movement, by me or anyone else in the camper, that makes the camper move;  or any tiny movement of the air to the left side of my face is going to through me into an unrecoverable attack. Then Tim’s going to have to run me to the nearest ER. And the kids get very worried too.

(That’s a whole post in and of itself).

We were all getting a bit stir crazy and hungry and needing a wi-fi, data, cell phone fix. So we drove an hour into the next town to eat at a restaurant that had free wifi.

On the way to the restaurant I was trying to put some makeup on. BAD idea, that triggered me in a huge way. 😦

Sunscreen?  Nope.

Powder? Nope.

Anything? I can do mascara and if I’m very very careful, my eyebrows and on a good day, lip gloss.

This really sucks.

Even though my friends and family and husband don’t care if I do or don’t ware any makeup, I feel better w a little on especially something to even out my completion. Some eyeliner, mascara and my eyebrows. And I like to ware some so that it shows that I am making an effort, to show I still care to show my husband that he means the world to me, and that he is worth the time and effort it takes me to look good for him.

When that choice is taken away from you, that is really frustrating and depressing to be honest.

On our drive in, we had some curves and must’ve had some slight altitude changes because by the time we got to the restaurant it was a ‘can’t really talk’ time.

Altitude changes are a HUGE trigger for me.

The wi-fi wasn’t working at the restaurant we went to…

We stayed and ate there anyway.

Now, I need to find something on the menu I can get into my mouth without having to open it very far and a very minimal amount of chewing involved.

I got a cup of soup and some cottage cheese.

We decided to go sit in a McDonalds for ‘desert’ and wi-fi!

As I walked out of the restaurant we ate dinner at to get into our car, it was windy outside and the second that wind hit the left side of my face, I wanted to drop to my knees.

Guess what?!?!

My ‘sometimes it triggers me sometimes it doesn’t’ wind on my face, added to everything else now. Now my bones want to explode from the inside out because they keep getting zapped by electrocuting shocks of lighting. Ahhhhhh!!!!!

I checked  the clock to see what time it was. I had another hour before I could take another dilaud

We get to McDonalds for our wi-fi time, and dessert.

And, now that we know the effects of the trigger – that sneaky wind –  today, I pulled my sweatshirt up over the left side of my face to make the trip from the car to the door of McDonalds.

I get on my phone and connect to the wi-fi to distract myself, to try to be able to do something else beside feel the pain.

We get back to our home for the week and I go to shower. I just happen to get the shower w a hard stream of water…..  Of course I did! Great!

Now I’ve got to be very strategic with washing my hair and face. One wrong turn and that water is hitting me in a bad place and I’m going to scream. From pain.

Shave my legs? Sure! Easy task? No! Why?

If I bend my head down l, past just a normal head bob to single a ‘yes’, and then the pressure from the blood flow changes in my head and face, THAT is also a trigger!

So, somehow I need to figure out how to shave my legs tonight, without bending over, in a campground shower. No problem….

Now I’ve just got to shampoo and condition my hair and wash the right side of my face and rinse them too! Prayer and strategy. That’s how I got through those two tasks. Shew!!! Made it through that!

Oh great! Now I need to brush my teeth…..

Open my mouth????  Put pressure on my teeth????

Nope! Skipping this tonight! There’s absolutely NO way. This, brushing my teeth, another sure-fire trigger, every time.

Now that my shower is done, time for bed. Just jump in? Nope.

First I have to take my sleeping pill, because it doesn’t matter how exhausted I am, I can’t sleep w this pain. So with the sleeping pill, by about 2 or so, I can get some sleep.

Now, let’s crawl into bed.

Just lay down how I’m comfortable? Nope!

I have different pillows that are all purposeful to me and how to lay my heads own on them.

I HAVE to sleep on my right side. Roll onto my left by mistake during the night? Oh hey! There’s goes that chance of sleep tonight, congratulations, you have now been TRIGGERED!

My head also has to be at a tilt, level, etc. as to not trigger an attack due to any difference in pressure in my head that hurts.

That was ‘a day in the life’ of me, today, Saturday.

Really,  all of this for what? And today only entailed hanging out in the camper, going out to eat, then for dessert. And a shower at night.

A lot of these things I’ve explained and described to you today, are automatic things I do, as it has become my way of life. I have just only realized how much this does impact my daily life when going to write it down for you.

No one, by just looking at me, from an outsiders perspective would ever guess that I go through any of these things.

And I don’t know what the person next to me has to go through on a daily basis either. What kind of personal struggles they have to deal with on a daily basis, no matter what they are.

This is why I am challenging you to be kind to others!  Offer a smile and a hello, while looking at them in their eyes.

Don’t judge. You can’t anyway, you don’t have all the facts.

Even in your own mind, { in my own mind too } off you catch yourself thinking those distructive thoughts, redirect your thoughts to something else.

Please.

How much more empathetic and compassionate would our world be if those were our thoughts rather than judgements and superior thinking?

It starts with one person.

Good night!

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