March 11, 2024
As you can see from my selfie, I woke in a ton of pain from Trigeminal Neuralgia (TN) this morning. It was so bad I had to cancel two health care appointments today, Psychotherapy then Physiotherapy. I couldn't drive like this, everything is too blurry, and I can't pay enough attention to the road, it would be dangerous, plus Psychotherapy would have not been beneficial anyway as I have a hard time stringing sentences together with this level of pain (while talking, writing is easier). I am very lucky and grateful my Health Care Providers are so compassionate and understanding of my many health issues. But this is why I can't have a job outside of the house, my body is too unpredictable, and I'd miss too many shifts...no one wants to hire someone with this level of health issues, my body makes me too unreliable, and most people can't relate to this, they just don't understand...hence why I've taken up writing and working on this farm.
I wake in pain every day. The TN, being one of my many different pains, is always present, but it usually sits low around a 3 or so and I can deal with that level in my current situation. But on days like this, when there are a few more triggers than just the usual ones (such as laying down, laying on a trigger spot, jaw clenching, noise, smells, etc.), it escalates to about an 8 and feels like I've been punched in the face (and yes, I have been punched in the face enough times to recognize this sort of pain). Today's triggers were; one, I had to get up early for my first appointment, so of course I can't sleep at night (worse than my usual insomnia), laying there trying everything to calm my mind so I can fall asleep, and then waking almost every hour worried I'm not going to get up on time...such a fun way to be, I've always been like this hence why I liked working afternoon shifts...but because I am use to this I just deal with it and usually just go on with my tired day (however, this morning I did change my next bunch of appointments to later in the day so I don't have to cause myself this sort of torture...seriously, who am I trying to fool...I thought I could change my sleep habit, but I am too tired to keep trying this right now, so decided I'm not going to bother with that at this time...maybe after more Psychotherapy I can learn to calm myself and sleep through the night, but as of right now, I'm too tired). And two, it was so extremely windy last night it made my house have a cool draft coming through which is a trigger for my TN. For most of the year (even in the summer if it's raining or is windy), when I go outdoors, I have to keep some sort of cover on my left ear, like a hoodie or a toque usually but also, I've been wearing a winter headband and as long as it doesn't slip off my ear it works great. For the past few winters, I had been sleeping with a toque on in bed but the last couple of months I wake up with a really intense full head headache so I stopped wearing it...on nights like last night though, it's too bad I can no longer wear that toque because the cool air in the house really brought up the TN pain level exponentially. I'm glad it's not windy like that very often but I did pull my bed away from the window this past winter and that helped a lot just from the cool regular window draft...although I love sleeping by a window, when I cared for my Grandparents, I slept under the window and even in the dead of winter I still kept the window slightly open, I love fresh air, one of the many reasons why I spend as much time outdoors as I can.
As mentioned above, the TN pain is like being punched in the eye, but it has many other different pains as well. It feels like a mishmash of all the following: heavy pressure against my eye wanting it to pop out, eye gets watery, sight becomes blurry(er), and at night on the road I can't take the oncoming lights as they feel like they're stabbing right through my head making my skull want to explode. It also feels like a sinus infection (which again, I have regularly enough to compare that pain), a tooth infection (I'm very aware of this kind of pain too), ear infection (again, something else I am quite familiar with), then what I call "Stabby Stabs" as there's really no other way to describe it but that it feels like a sharp knife is stabbing around the left side of my scalp, sometimes into my ear, down the side of my neck or periodically into the left side of my face...it follows the Trigeminal Nerve, the 5th Cranial Nerve, which covers the entire left side of the head and face from the base of the skull, making my face droop looking like I have Bells Palsy (the 5th Cranial Nerves is on the right side too, but I don't get pain there very often...just periodically when she wants to mix things up a bit, my body likes to share, I think she thinks it's funny, she's such a jokester).
After getting confirmation that my Health Care Providers received my communications and were ok with me not making it in today, I went back to sleep and actually slept later into the afternoon...Gran always gave me heck for "Sleeping my life away!" But I'd rather feel less tired than have a long day...it sucks I know; I'm getting so old and technically, the past 20 years since the TN began, I 'have' slept most of my life away, but the alternative sucks. Being in pain and exhausted and awake just to say I'm awake...I'd rather feel a little better and have less awake time but at least be able to somewhat enjoy it. I still did my chores today (cared for my rescue cats, the wild birds, filled the two stoves I still have going, and went for a small walk to the barn and back) and took some photos of the beautiful day I still got to somewhat enjoy despite the pain and still exhaustion even after all that extra rest I had...regular daily pain is exhausting...this level of pain is beyond that. But at least I tried to make the best of it despite everything and that is what makes it all that much better! The alternative of just sitting and suffering sucks and I'd rather still be able to enjoy some of my life for what it is...I really do have a wonderful life, in a beautiful home, on this totally awesome farm, and I deserve to enjoy it, as best I can!!!
