Living with Chronic Migraines

So, here I am, 46 years old and writing a blog about having chronic migraine disease. Why am I writing a blog about this? Well, one reason is just for the hell of it, so I can have a place to express just how having this neurological disease has altered my life in so many ways. This blog will also be a place to disseminate info about chronic migraine disease, to sufferers and non-sufferers alike.

I am calling this blog “The Axe Files” because my migraine pain feels like an axe is in my head and I pretty much have this “axe” in my head every day and it sucks!!

How did this happen? Well, this is the million dollar question, isn’t it? I’ve had migraines since puberty. They happened pretty infrequently, maybe once every month or so and easily fixed by an advil. Then, when I turned forty or so, all hell broke loose and they just seemed to become chronic (which is defined by 15 or more days of migraines a month….). The current research indicates a cortical spreading depression as the migraine mechanism in the brain and a central sensitization of the brain, which essentially turns once sporadic migraine attackes into a chronic condition. Very complicated!  I’ll post some medical links soon so you will have the “official” info.

I used to have a normal life. There were so many wonderful things that I loved to do and I never had to think twice about doing them. I love nature and animals. I’ve always loved hiking – I’ve hiked several of the 4000 footers in the White Mountains, the highest being Mt. Adams, which is the second highest peak after Mt. Washington! I followed the Grateful Dead for years and went to rock concerts many times a year starting in 1978. That was my joy and love. These are two of the things that I can no longer do – concerts have way too many triggers: smoke, loud noise, people with perfume. I can no longer do long, strenuous hikes, as that most certainly triggers migraines. I can occasionally do short walks and hikes, but not as often as I’d like.

Having a chronic INVISIBLE illness (more on this later…) also poses some interesting challenges when it comes to relationships with family and friends. Some get it and are supportive and some become AWOL. Some really think they are helping when they suggest that you just need to become less stressed or take something for anxiety and that is your ticket out of your hellhole. Get a grip! This is a genetic neurological disease and it is progressive in some people. I just happen to be one of the lucky. I mean seriously, would you tell someone with MS or epilespy that their illness is just being caused by their anxiety or that if they just eliminated such and such food they will be cured? I AM SO SICK OF HEARING THIS. I have spent thousands of $$, eliminated so many foods, been poked & prodded, injected, manipulated, massaged, therapized to death. And still the migraines progressed. This disease is one of the most difficult to treat.

Okay, so this may sound like a pity party and sometimes this blog may serve to be that. BUT, I will not immerse myself in pity. I will take a dip into the waters of pity occasionally and will move on pretty quickly, preferring to try to use some humor and humility to deal with a shit situation.

Here are some positives: I have an amazing husband who is my shining light! He is supportive, funny, loving and without him I am not sure how I could survive this challenge. I still work! I really like my job as a Labor Union Office Manager. I’ve been doing it for 17 years. Yup, some days I have a hard time making it through the day because of the pain, but it is a Labor Union, so I have a very understanding workplace. Thankfully I only work 6 hours a day. Right now it is doable. Lucky me!  I have some great friends who are warm, supportive and wonderful, as well as very special godkids who delight me!  I have two sweet kitties who bring joy to my heart and make me laugh and smile daily. I have a cozy home on a lake in a beautiful setting. It is so much more than many have and I am truly grateful. I know this everyday.  I can still do artwork sometimes when the pain is under a certain level – mosaics, painting and occasionally beadwork. I also still can garden, a huge love of mine, though I leave the heavy lifting and digging to my husband Patrick.

This is it for today….thanks for listening! Peace….Jane

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