Originally written on 8.17.16
So today hasn’t been a good day. I’m practicing telling the real truth about how my day was and or is going. So, here goes. Today mostly sucked. I’ve been in a great deal of pain most of the day. I didn’t sleep more than 3 hours total last night, due to the pain. Didn’t sleep at all the whole 7 hour ride from home to where we’re camping for the week. Can’t hardly even talk to or with anyone because it hurts to even open my mouth! But, it also hurts to keep it closed! I’ve had to take 4 pain pills throughout the day today and am about to take another one. In the spirit of be naked honest, when I say tak ba pain pill, my pain pills are 4mg pills of dilaudid, which is supposed to be mg for mg 8xs stronger than morphine. THAT is the kind of pain TN brings on me.
I was so so hungry earlier because I hadn’t been able to eat all day today. Due to the fact that I can’t even open my mouth wide enough to get food into it, because the pain is so intense, not to mention once I do get it in my mouth now I have to chew it. Not only that, but I felt something new today, today it hurt to take a drink of water. Did you ever realize that when you take a drink of water (or any liquid I’m assuming) out of a water bottle that you actually suck the water into your mouth out of the bottle first before swallowing it? I didn’t until today. Because I was in so much pain that it hurt to take a drink of water!
It has been about 2 years now since I’ve been in THIS kind of pain. And it seems like since my surgery last week, my Trigeminal nerves are misfiring in all new ways and directions that I’m not familiar with and the coping skills and pain management tools I’ve learned and that have worked for me are now not working so well.
I did have about a 45 minute window this afternoon where I felt pretty good. And by that I mean I wasn’t having electrical shocking pains shoot through my face for a whole 45 minute time period. So I thought I’d go with my family to the local pizza place and brewery to sit with them and enjoy their company. I’d say I lasted about 10, 15 minutes at the most without the shocking, excruciating pain returning. And crazy at it may sound, after you’ve had a few minutes even of relief, when it starts back up, it seems even more painful than when it’s a constant pain.
Imagine hanging onto an electrical cord, that’s plunged into an electrical outlet, without the rubber coating around the live wires, and THATS what it feels like is happening in my face! But then don’t forget to add on top of that what feels like a million little people inside your teeth, jawbones and cheek bones all with crow bars and all trying to bust out of the inside of your bones by prying from all different directions at the same time. That is the best way I can think to try to describe what the pain feels like to me.
Let’s add to this the ridiculous weight gain that’s due to all surgeries and drugs I’ve been on, top of the fact that this nasty disorder knocks you on your @ss so there’s not much physical activity that’s going on during these bouts and the fact I’m trying to continue to go to a fit body boot camp that I just stupidly started 4 weeks ago that includes a food plan. But do you think I can even do that? No! Because this nasty, nasty, excruciating painful disorder, that by the way, has the nickname of ‘the suicide disease’ won’t leave me alone!!!!! I don’t want to take the pain pills because they make me swell, they bloat me out etc. Now, let’s add on top of all this guilt and some depression along w anxiety because instead of being outside with my family hanging out with them, around a campfire, I’m sitting inside our camper trying to stay sane and get ride of this pain at least enough to be able to go out and sit with them!
But, on the outside, I don’t look sick. I just look bitchy and rude and unfriendly.