There’s a reason why we have the saying, “Hindsight is 20/20.” What do you wish you had known at the beginning of your patient journey that would have made it easier and less scary?
With migraines there is a Lot I would have wished I had known. The fact is when you have episodic migraines doctors do not tell you much about your migraines. They hand you a triptan and tell you to take that abortive at the very first sign of a migraine.
I wish I had known what menstrual migraines were, because they present differently in me than my regular migraines. I didn’t know I was getting them. Which actually meant I was pretty frequent on the migraine scale from the very first migraine I got.
I wish I knew the migraines could go chronic and that increasing in frequency as I was could be a sign of that. Or when I should have been put on a preventative. Or when I should have seen my first neurologist. Instead of waiting until they were beyond 15 a month.
I wish I had known auras could become persistent and outside of the migraine attack. It would not have disturbed me so much when it happened to me. I wish for sure I knew that vertigo could occur with migraines and that these bouts could last days or months… as that had seriously freaked me out the first time it had happened.
Had I even known migraines had the potential to become the serious entity they are I would have done my own research on them. Of course I would have. However, at the time, like most people I though ‘seriously horrific headache’.
When it comes to my fibromyalgia on the other hand I actually was ahead of the game. I was quite certain I had it prior to being diagnosed with it. It does after all take some time to be diagnosed and by the time you do you have a lot of symptoms and have already adapted to them. I already knew the impact it had. I already knew from a young age that it would impact the type of work I did for example. I knew it could impact me further, but I do consider myself lucky because it could be worse than it is. I had done some research, on it and other conditions that I might have (like lupus since I have a high ANA factor) and so I knew of the symptoms I had, and could potentially have… so I was prepared when some of them did in fact years later crop up. I knew I had to moderate my lifestyle and in fact did before my diagnosis. Knew I had to live within my limits and certainly try to… although sometimes exceed them. So by the time they got around to diagnosing me I had already figured out how to cope and knew my illness well. I just didn’t know in fact ‘what’ it was. Just that it was.
I wish though that I knew the impact pain could have on a person. I knew what it was like to have hypermobility syndrome as a kid. Then FM. And then migraines. Then chronic migraines. Add them all up and it had a severe impact on me. One didn’t. Two didn’t even really. I still adapted. It was difficult but you learn to cope. Three was extremely difficult and then when the migraines went chronic it was just too much to handle. Frankly I wish I had never learned that about myself. That there is a pain I cannot cope with. It is better to think you can just conquer anything. When i was younger I just assumed I would persevere. As long as my mind was intact and I could find satisfying work, obviously a desk job, I assumed my wellbeing would remain intact. I wish I knew how dangerous pain was. That it was going to get worse. So that I would have been mentally prepared for it. So that I could have learned all the different coping strategies I would need for it way in advance. But I can say that all I want… that is truly something that one needs to learn by experience. One cannot know pain until it is endured. When it is endured, then you adapt. Until then, you just cannot fathom it.