Being Sick & the Pain of Being

Working out how to live with Trigeminal Neuralgia

The heat last week caused a flare-up of my trigeminal neuralgia and I was unprepared. I get “break through” pain but sometimes it’s different, like needles scraping across my face instead of stabs.

I do the best I can and get some extra sleep on the painful days. It’s a sick trick of this disease that the pain does not flare up while you’re at rest. Being depressive in nature, I sometimes wonder if I should just go to bed for the duration of the attacks.

I tell my boyfriend and my neurologist (both male) that I can’t “stay locked indoors like a princess.” When it’s over 90 degrees, or even just hot and humid, or maybe the wind blows the wrong way, or the sun hits my eyes and I have to squint, I have attacks that make me want to never leave the house again.

I often debate out loud with my boyfriend about having my medicine “upped” again, but these meds turn me into a windup doll that runs out of energy at 3pm. Every higher dosage takes a bit more out of me. I’m tired, and it makes me more tired.

On a bad day, I have to start the day with telling my BF (before it gets too bad) “I’m having pain today, so can we limit our time outdoors, or try to go out after dark?” because it’s too hot and it might be torture.

My disease holds me hostage and it keeps me from the world. In the past four months, there haven’t been any weeks I could literally lock myself in because I’ve been in physical therapy. I also have been exercising pretty diligently to keep from getting depressed and hopefully lower my heart rate. (I have tachycardia but after a small battery of tests, they don’t know why. ) So I “get out” but it’s in a very limited way, and my world is pretty much physical therapy and doctor visits. It’s not a lot of fun. But I am good at surviving and figuring out how to live through turmoil, kind of.

I am still sad because I don’t know *how* to live with this disease yet, or my other disease (Hashimotos) which was diagnosed a year ago this month. I didn’t think the latter was a big deal until it caused this shoulder injury to morph into an autoimmune reaction. As far as the TN, I don’t know when the next attack is going to prove “too much” for me and I will have to go up a dose or even try a new medication. I don’t know when it will be time for brain surgery, and I don’t know if I can ever prepare for making that decision.

People tell me to take it a step or day at a time, but damn it, I have goals! This disease is progressive — no magic fairy will wave a wand and make it ok — and locking myself away won’t take away the pain, anyway. It will only minimize the severity (and the embarrassment/fear of) an attack.

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