Dear September letter,
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I write this for myself, but hope to help others. I suffer from Migraine and for anyone that’s heard of this a vast majority assumes it’s a headache. I’m here to tell you it’s not. It’s a misconceived Illness. Migraine is an illness and ONE symptom is head pain. The other many symptoms are nausea, vision disturbance, vomiting, ringing in your ears (to name a few). I’d like to take the stigma out of this illness. It’s a 24/7 deal. Everything from how bright or overcast it is outdoors, glares off the chrome on a truck riding in front of you on the road, sun off the ocean, glares off the snow.

Fluorescent lighting, flickering lights, camera flashes etc. the pitch of sound, the smell of a flower or chemicals. All of these factors can make or break how the rest of your day will be.How a happy occasion (such as a wedding) can turn into a horrible day/night because a camera flashed in your face or the bouquet of flowers made you sick. How someone's cell phone can have a flashing light when ringing.
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A visual aura or disturbance can last 20-40 minutes. It's preemptive to the onset of migraine. Unfortunately for someone like me, I have that aura 24-7, it came with a migraine on 10/28/16 and took up residence in my brain and hasn’t left. It’s called Persistent visual aura it’s rare with no cure.

That October the migraine lasted 6 months, I had to take a leave of absence from work with no pay because I’m self employed. I couldn’t see well, the nausea was debilitating, I had weight loss. I couldn’t look at a tv or device-If someone spoke to me their voice exasperated the nausea.i laid in a dark room for months. I could smell everything from a mile away. The smell of food made me sick. 
I subsisted on pasta, bread, cereal and Ensure. All of this with NO HEAD PAIN- NONE! I’ve seen the top specialists at Boston Hospitals all to be told it was called Status Migranosis, or Intractable migraine. With this illness came anxiety and fear. Will I ever be better? Will I keep losing a pound a day for months? How will I support myself? I went to every doctor under the sun all for them to say they’ve never seen anything quite like this. I live in the North East, could it be Lyme? So I took two rounds of meds even though I’d tested negative. I went to holistic doctors. 
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Had magnesium and other vitamins by IV. I dragged myself from doctor to doctor looking for answers. I have PTSD from this experience (will this happen again? Why did this happen?) Now that you have a rough background of my story, the reason I’m telling all of these details is so others who suffer from migraine will read this and know they’re not alone.
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That all of these symptoms can and may happen. For some it’s one symptom, for others it’s a few symptoms but the next one may be entirely different. Some have stroke like symptoms. Others get strange numbness, it varies greatly. Our brains are tricky, no one not even the top doctors in the country have all the answers. I want others to not feel so alone. When someone has a disease or injury that’s more understood others can be very empathetic. If we see someone with crutches and a cast, we hold doors, we aid or guide them to help alleviate their pain.
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Unfortunately I’ve found due to lacking knowledge others are less empathetic because they can’t “see” your illness. Not only that when you say you have zero head pain, it’s like well then what’s the big deal? Certain chemicals or smells can make me feel like I’m dying of the flu. One minute I’m fine, I smell a certain chemical (formeldahyde being one, it’s in chemical hair straighteners) immediately makes my limbs weak and tingly, nausea sets in and I have to lay down. Unless you experience it first hand it seems impossible. I’m here to tell you and others who suffer it’s not. I’m 47 years old, I got my first migraine when I was 15 it was severe head pain with no nausea. Now my migraines are entirely different. My sensitivity to light has always been there, but some years I’ve suffered more than others.

That October was the turning point of no return. I’m sure others with chronic illness stop talking about It too. You feel you’re being judged. “Oh she’s sick again” or “when will you rally” like this was a choice to feel sick day after day. I’ve had supportive friends and family so maybe it’s just the guilt I feel from complaining that you stop talking about it, but because you stop talking about it doesn’t mean it went away. It’s like grief there’s a certain window of time others deem appropriate to grieve. So say you lose a parent, a spouse, a child. You have a window of time where others are very understanding but as more time goes on others are less understanding as to why you can’t “get with the program”. 

Chronic illness is grief. I’m learning to forgive myself and others. This has been a hard lesson and humbling too. I’ve slowed way down. I do what I can when I can without apologizing. I want others to read this to do that too. Heal yourself, love yourself, do what you can when you can but not at the sake of your health and wellbeing. We’re all unique creatures and life is hard, but it’s good too. I didn’t get to tell you all I’m blessed for. So so many things. A nice home, husband. A good job. great friends and friendships. Animals who are the best! So many things! I try to take one day at a time. I hope you all do too:)

SASHA