When you’re on any journey that involves an Illness or Disability you learn ways to help yourself.
For me, logging my pain down in different forms helps me not only see a pattern or trigger but it helps my team of doctors as well. Since I’ve been an adult and navigating my own Health Journey, I have seen a significantly better response to “Pain Journals” and “Pain Logs” than going in without one, especially when seeing a Specialist or new doctor.
What are Pain Logs/Journals?…well it can be anything really. Simply buy any notebook and have a pen handy or you can use your phone note pad as well. One can log each day they have pain and/or the severity of it. For example..Monday (Mild), Tuesday (Mild), Wednesday(Severe) and so on and so fourth. One could also have a “Time Stamped”Log..example: 1pm (pain) 1:30pm (pain) 2pm (pain) and so on. One could also write down what they are doing that day…because what we do can also affect our pain. Example: 1pm (pain) was waking. 2:30pm (pain) sitting/watching tv. 3pm pain (eating.) Any of these forms can help one see connections between pain and triggers.
I start new logs or get back to logging when something new (an illness or symptom/s) comes up that I’m just not familiar with…when my current issues seem to be acting out of my norm or lastly when I’m going to see a new specialist.
My current pain journal consists of pretty much all three of these. As of lately I am logging my Trigeminal Neuralgia for a Nuerosurgery Specialist at Stanford Medical in Palo Alto. I’m hoping that with my home (day to day) notes, in combination with my Nuerologists notes, that they will have a better picture or idea of what steps to take for me in my treatment.
The downfall and hard part about journaling is 1: Trying to mark my pain the moment it happens can be taxing. Especially when I’m riddled with severe pain and all I want to do is cry. Needing to concentrate and write with such pain can be difficult and sometimes impossible. I do find myself with incomplete logs at times. (Plus side to this is that I can see which days are truly severe because I have to stop all logging because I can’t see or concentrate.)
2: Trying to write every single symptom or time it happens can interfere with daily life just like my symptoms and illnesses themselves do already. I am a mom, wife, I have things I need to do and sometimes logging while tending to my other roles can become very piled on. Try driving and having a flare or symptoms and you need to log it. (Don’t Use Your Phone While Driving.) Try making dinner and bam, you need to log but you can’t walk away. Or what about running errands mid store and oof another instance and you’re trying to concentrate with people around and pain taking over. 😬😅 This life is hard sometimes. I will say that, but once you can have a few days, weeks built up it can make such a difference in not only diagnosis but treatment as well. Even home care can become a bit more tailored once you get an idea of how you roll.
Think of yourself as a Theme Park and each of your illnesses/disabilities are a different ride. You have to keep track or the entire system can and will shut down. The owner of the theme park, Me, has to be knowledgeable of my own park as best I can so that I can ask for what I need and deserve from those around me. The Doctor being the Mechanic in this metaphor. So while I do find logging tedious and bothersome, it’s also helpful and insightful and a tool I will continue to use for myself. I highly encourage that if you’re struggling to get your doctor to notice, try this and if not, find a better doctor. The good ones will appreciate the additional helpful notes.
Until next time