Being actively involved in our treatment goes far beyond what happens in a hospital or clinic. Obviously we need our doctors to help us explore and access preventative and rescue medications. Plus we need them for supplemental treatments such as physical therapy, chiropractic care and mental health assistance for coping. As much as we need to be actively involved in our medical care, we also need to be actively involved in all the other aspects of our treatment.
The good news is, it's easier to be actively involved in treatments that don't involve medical professionals. Over the years, I've actually found the things I do (and don't do) beyond my medications are very important to my quality of life. When you live a life of chronic pain, you don't have the luxury of living carelessly because suddenly everything you do has a very real consequence.
Being actively involved in making lifestyle choices is a critical part of treating a disease like chronic migraines. For me that means things like:
1. Staying hydrated. Bringing a bottle of water along when running errands.
2. Trying to get the right amount of rest - too much is just as bad as too little.
3. Pacing my activities so I don't overdo it and make my pain worse.
4. Avoiding my big triggers (sun, loud noises, big crowds, etc).
5. Regular gentle exercises as inactivity can make matters worse.
6. Looking after my mental and emotional well being. Sometimes we need to just do something because it's fun and social, even if we know it will trigger a migraine. Life can't stop completely.
7. Like me, many people who live with chronic migraines are also living with other comorbid diseases or conditions, which can impact each other. I've found managing my fibromyalgia and endometriosis are just as important to managing my chronic migraines as staying hydrated or avoiding triggers.
Allowing any of these to get out of hand would result in increased pain and, when you are only allowed to treat 9 migraines out of 18 a month, containing the pain as much as possible is critical.
Treatment is about much more than being a patient.