Today's prompt for the Awareness Month blog challenge is:
Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.
From the outside looking in...
Most of my family and friends are only vaguely aware of my job as a patient educator and advocate. It might surprise you to know that the majority of them don’t even know where I work other than ‘online’.
I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.
Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions. In reality this couldn’t be further from the truth. Most of my time is spent either writing, or helping other patients online. Most of these people think that spending time online must make me feel worse, when in reality the opposite is true. Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap. I stop for the day only when a Migraine is completely out of control.
A few relatives think I waste my time each day in front of a television eating bonbons. I wouldn’t know a bonbon if it stood up and introduced itself to me. Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time. I average approximately 12 hrs a day working as an educator/advocate. It’s true that part of this time is my job. However, the vast majority of it is volunteer. Patients are my priority. Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day. I do my best and hope they see that.
A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it. The reality is that I visit many online social media platforms, participating in too many of them to really count. Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support. I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other. Hardly a waste of time in my book.
I take my meds when I’m supposed to. I distract myself from my pain every day. I take out a little time each day to concentrate on things that cause me to pause with wonder and smile. I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home. I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular. I struggle to be as normal as I possibly can, with a very *not normal* situation.
It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details. I think they don’t ask questions because the reality is that they don’t want to know the answers. They know I live in pain and that makes them feel uncomfortable. They don’t know how to talk to me anymore. Mostly, they are uninterested and busy with their own lives. That happens with all of us from time to time.
My hubs and kids know how I spend my time because they live (or used to) with me each day. My kids are Migraineurs too, so they understand from that perspective. My world became very small when I got sick and that’s okay. It’s okay that they are the only ones who “get me” because they are the ones who matter most. And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.