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It Isn’t Visible, But It’s Impactful

 
 
The hardest thing is knowing that it doesn’t ever stop. This particular migraine has been going on since around September. In the end of November, early December, it was easy to say that the migraine intensified as the seasons changed. At the end of January and all of February, I completely recognized that my doctor switching my medication, then taking me off it all together intensified and changed my migraine. This one is the only one that I’m positive as to the cause. While I was off my medication, my migraine was different. There was a constant stabbing pain that intensified as the days went on, and was alleviated when I was approved to go back on my original treatment plan. Now, Wisconsin can’t choose which season it is, so my head is going insane. But maybe weather really has nothing to do with it. It does. But maybe it doesn’t.
 
My old migraine app decided to shut down, so my new app only has information that I imported from March, and current info from April. I’m happy to say that these new visuals make it a lot easier to understand what is happening, but these new visuals are hard to look at.
 
Let’s start by looking at the calendar. Notice how every single day is marked by something? That means even if their were short periods of relief where I had “ended” the particular migraine, within that same day, a new migraine had started. Maybe it isn’t fair to ever “end” the migraine, but if I don’t there’s no way to distinguish between when it’s really bad, versus just inconvenient. What is nice, is this calendar shows which days I take medication, which days are considered “missed days” and which days are limited.
 
What constitutes a “missed day”? For me, I have my “missed days” set to include days where I miss work, school, social activities, or “life” which I consider regular activities such as grocery shopping or cleaning my house. If you look closely I’ve missed 28 days of the last 42. But this part appears deceiving. I missed work once and I missed school only 4 times. That is still a lot of school to miss in a small percentage of the semester. The other days, are typically days where by the evening hours, I couldn’t have the TV on. I’d sit in the dark, or with a few lights on and struggle to prepare and then eat dinner. Its the days where my spoons were all used up before the sunlight was all used up.
 
So, what then constitutes a limited day? Limited days, are days where my migraine didn’t prevent my day to day life from going on, but made me slower in what I was trying to do. Whether that means it takes a few extra hours to complete homework, or I stare blankly at work when I could be more productive. These days seem to come in pairs, for whatever reason, and don’t usually cause me to take medicine. They do sometimes, follow days that are “missed days” where I took medicine – so maybe this is what a rebound headache is? Who knows.
 

 

So how does this all add together to make something useful? Out of the 43 days I’ve been tracking – since I only input data from March from the other app – I’ve had 0 migraine free days. Zero.

But no one really knows that. No one understands that just because I did my makeup or hair, or am smiling and conversing, that those actions have ZERO correlation to the condition that I am in.

Note that my MIDAS score is up to a Grade IV, or a Severe Disability.

15 migraine days in a month qualify an individual to be considered disabled. I’m 20 years old, every day is a migraine day. I am considered severely disabled according to this app. Obviously this isn’t news to me. I suffer from one of the most debilitating conditions that exists and can’t even manage to go grocery shopping anymore. Of course I’m disabled.


Which brings me to a difficult fork in the road:

  • I registered for my classes for next semester, because I fully intend to get a degree, graduate on time, and have a successful career. But just two days prior, I missed yet another exam. Will my body even allow me to push through my final two years?
  • My massage therapist mentioned how she’s been able to feel the pulsating in my head more intensely over the last few sessions. So even though it is literally in my head, the increase in intensity, isn’t something I’m making up. If its getting worse, does that mean its going to hit the maximum worse it can be? Does that signal that its going to get better?
  • I see a headache specialist mid-May. I have plenty of charts and documents to present to him, but do I just hope he knows of a better treatment plan? Do I hope that he can give me some insight into whether the massage therapy is worth continuing, or if I should try something new like acupuncture or chiropractic? Do I ask about disability?

At what point, do I ask to be on disability? At what point do I accept that maybe I can’t go on like this and maybe my life as I knew it, will cease to exist as I have it planned out?

But is being on disability even worth anything? Is knowing that I’m permanently “different” going to do anything to help me? Will it help migraine? Will I ever have a shot at a normal life? I mean, what good is sitting at home, having nothing to look forward to going to do for me?

-A

Please note, that all information I am sharing with the public is normally not shared. This is private health information and my sharing it is in an attempt to bring awareness to the general public regarding the reality of many chronic pain sufferers. I am in no way saying that you should rely on an app for information rather than a doctor, only that this particular app has allowed me to visualize and document my case in a very user friendly way, and will help me share the information with my doctor.

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