Originally posted on SparklyAura.com, shared with Chronic Migraine Awareness, Inc.

Sometimes I wish you knew how this feels. The searing hot pain in my eye, head, neck, face, ear, jaw and skin. The never-ending nausea & vomiting.  The overactive senses, light hurts, touch hurts, hearing amplified x1000, having the nose of a bloodhound even when what you are smelling is not even there. Not being able to find or sometimes comprehend words and the slurred speech. Can you even imagine how scary it is when your vision is affected? Double vision, blurry or fuzzy vision, seeing spots or sparkles or a flat out aura ( which is hard to describe), but what you are looking at you can’t see and have like prismatic bright flashing lights which continue to grow until it’s out of your peripheral vision. My eye swells almost shut a lot of the time & sometimes the whole right side of my face swells. Not really knowing if the weakness, numbness & falling down on the one side of my body is from migraine or is it a stroke. So much dizziness, having to hold on to the wall or furniture to be able to walk. All of the random other diagnoses that go along with migraine & their symptoms also.

Sometimes I wish you knew how this feels. The deep dark depression & anxiety that accompanies the beast. The loss of self, of worth & of control. Buying blackout curtains for every room in your house so that you can tolerate the minimal light needed to see. Beating yourself up almost everyday because of what you can’t do anymore. Feeling like a failure as a wife, mother, daughter, sister, aunt, friend and colleague. Guilt, the all consuming guilt. Sometimes wishing for death to end the pain & suffering. And then, out of the blue you have a good day or maybe even a good week, you look good and can accomplish things. You are you! But in the back of your head there is underlying anxiety, you know this reprieve won’t last.

Sometimes I wish you knew how this feels. Eye rolling, anger, being talked about behind your back for a genetic neurological disease. Pretending you don’t know this is going on. Once respected, now discarded. All of the questions, have you tried this or my cousin’s mother’s best friend tried this and she is cured now. Really?? There is no cure! Why isn’t your doctor doing more for you? When you know that the doctor is. Migraine is personal and everyone’s symptoms and treatments are different. Trying to convince yourself that you are okay and can get through the day, when your head & body are screaming at you to take your meds and get to bed. Fighting that feeling. Counting meds because you only get 9 triptans a month and you have head pain about 20 days a month!!! Is this one going to escalate or am I just going to be at a bothersome pain level today. Waiting too long to take said triptan and it not being effective.

Sometimes I wish you knew how this feels. It is my reality, ALL OF IT! It sucks and the stigma sucks, so I will keep only non toxic people by my side and will try to continue to learn my body’s limits. I will also have to learn that some people are just ugly & hateful and I must not waste my precious energy on them. I will continue to write and advocate for those who cannot for themselves. I will learn not to feel guilty for having a good day and doing my hair and makeup. I will learn to not let the awful things people say & do not affect me. I will keep fighting these beasts in my head!

Sometimes I wish you knew how this feels, and sometimes I wish that I didn’t!

SparklyAura

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