Thursday Thoughts: I hate epilepsy and I hate being a nurse

This post is just my random thoughts and pain.

I’m a nurse.. pediatric home health. I like to joke and say I’m a human seizure dog. I been with the same patient for 2 years. I take care of her 8 hours a day and I just wait for her to have a seizure.

I don’t know when it’s going to happen. I’m just there. I document, monitor, assist with activities of daily living, I’m a medical bestie.

I had never really dealt with epilepsy until this patient. I’d seen seizures but nothing like my patient.

I was almost done with home care nursing until my patient.

I spend 40 hours a week with a patient 5 feet away, listening to their thoughts, emotions, hopes, dreams. I encourage them. Pray for them. Provide medical care. Provide emotions support It’s hard not to emotionally attach to your patients. I really struggle with that. As much as I say I leave work at work.. you don’t leave the feelings and empathy at work.

At home I think to myself about crafts and fun ways to fill my patients time the next day. I think of ways to educate my patient about their diagnosis, in case one day I’m not their they know how to handle themselves. My patient is a big part of my life.

That’s why I hate being a nurse. I feel helpless against this epilepsy monster. I know everything about it, the triggers all of it. It’s like an obsession really I’m always studying. I always hope that one day I’ll read some update that’s a magical cure and I can rush into my patient house and tell them about this amazing article and this cure. I have befriended people with epilepsy to just learn more about this awful diagnosis.

I had a countdown. We had gone 10 months 2 weeks. I wanted to physically punch epilepsy! It just shows up whenever it wants, interrupts lives. It’s so close to the holidays it’s just not right.

I love to help. I love cheer people on when they’re going through. I love being a nurse consoling and comforting the sick. I just really hate when I feel like a pointless piece of nothing. I feel like I’m just taking up space when I could doing SOMETHING! ANYTHING!

I just wish I could do more than cushion blows and watch. I wish I could take it away. I wish I could give a straight answer to why this occurs. I wish I could have some type of heads up.

I hate this for every family. I see entire families pause, put their lives on hold and grip until it releases them but you never really rest. You’re always wondering if that stare was a second too long, or if a movement looks just a little bit off.

You’re in a constant state of high alert just waiting this monster to show up.

Then it shows up and realize you can physically prepare. Have your supplies handy. Oxygen prepped. You can have all the seizure precautions you want but you can’t put up emotional precautions. You can’t prepare for how you feel knowing that patient had plans today.

That patient had a whole day they looked forward to that’s just completely destroyed.

You study and know what not to do. You keep a clean house. Learn all the homeopathic treatments you can. Keep the calmest environment, remove all stressors and it still shows up.

It’s just there!

I know what I go through just watching. I can’t imagine what my patients actually endure. The physical pain and the recovery after. Putting the pieces of your life back together.

Epilepsy is like a tornado. It just comes in tears things up and that’s it. Pieces of personality here. Memories there. You gather them up and start again but you know what damage has been done. You know what grew before. You know the beauty that was their. You pick up the pieces and you rebuild but you always wonder.. when is the next one.

I could compare epilepsy to an earthquake. I’ve been waiting for “The big one” for 10 months and it came. You build 10 months of memories and laughs and epilepsy may completely wipe pieces of those memories away. Entire memories gone. Shaken to rubble. My heartaches because I just want to replace each memory with interest! But I can’t I’m just a nurse.

Sometimes being a nurse I really feel like I’m helping and making a difference. Then there’s times I feel like just a damn pillow with a pulse and I just get so mad. I wish I could do more.

I wish I could put epilepsy in box and suffocate it.

Or maybe if we all stop sayin it’s name it will disappear life Voldemort.. I wish nurses were magic… we aren’t though and days like this it’s painfully clear I’m human and I hate it. All that “super nurse” b.s is just that b.s. super heroes fight crime! Super hero’s save the day. Super nurses get what? When we don’t save the day we just do what’s within our scope of practice we do all that can be done, what is super about that?

Right now as a super nurse I don’t feel very super.. super useless yeah. Super annoyed, super frustrated. Super defeated and super tired.

I thought I was a super hero! I thought I had magic rid my patient of seizures since they been around in while.

I started hoarding supplies in Summer. Mentally there’s always a war. I planned and calculated to be one step ahead… but epilepsy beat me to work to day. Epilepsy won.

Today Epilepsy plagued Gotham and the citizens had no time to flip the switch to call for Batman.

Super nurse. Super my ass.

I love to help people but I really hate seeing people in pain.

I just want every day to be vitals within normal limits and wonderful.

I hate to be reminded I’m a nurse. It’s nice to be a medical confidant.. to forget every once in a while you’re here to do a job. I love keeping people happy and healthy.

I hate today. I hate epilepsy and I hate being a nurse in this moment. That’s just where I’m at today. It’s not permanent. Tomorrow I’ll be fine. I’ll begin a new countdown and be thankful there’s no seizure activity each day. But today I’m mad. I’m sad. I’m helpless.

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