It was about this time two years ago that we got the much hoped for news that I was pregnant with little Macie. After three early miscarriages, this was a much celebrated occasion and I was so elated! I had only known I was preggo for about a week when I started to feel really ill. Not just the usual nausea and fatigue, but I just felt really odd and off…like an alien had moved into my body. With this off feeling I also started experiencing daily headaches and lots of migraines. Being that I was pregnant, I couldn’t use my normal migraine treatments, and they become more frequent and more severe. I blamed it on the hormonal supplements I was taking due to the risk of miscarriage, and figured I would feel much better after the first trimester. When, in fact, things got worse in the second trimester, I just had to ride it out, trusting that once the baby was born, all would be well. Now, two years later, I’m still in a daily battle to manage chronic migraine.

Being the googling nerd that I am, I have become somewhat of an expert on migraine. So, let me inform you that chronic migraine is diagnosed for those that suffer over 15 headache days a month (less than that is termed episodic migraine). At the worst point, I was having around 20 migraine days a month, barely one day in four or five was a day I wasn’t in pain…and I pretty much never had a day when my head was clear.

So here are a few of my scattered thoughts about becoming an unwilling member of the community of chronic pain:

It sucks. Plain and simple. It really does. Part of me wants people to understand what it’s like to have to spend energy you don’t have looking after two young boys, and then all your ‘free’ time in a dark room with an ice-pack on your head. But then, the other part of me knows that it would be impossible for anyone to understand what it’s like unless they’ve been there.

It’s lonely. Pain is isolating. Making plans can be tricky and they’re always pencilled in, pending on what my head is doing.

It affects the whole family – especially Caleb. Goodness knows it’s hard enough listening to someone whine when they’ve got the flu, it’s virtually impossible for two whole years. He has to carry the extra weight with the kids and also deal with a wife that’s almost never 100%.

New, often really annoying, buzz words become part of your vocab. I remember one Christmas when I was little someone brought tiramisu for dessert. I had never heard the word before, and all of a sudden it was like the new hot word for the day; everything was ‘tiramisu this’ and ‘tiramisu that’, and ‘this tiramisu is lovely’, and ‘have you tried the tiramisu yet?’ SO annoying. That’s been our house for the past couple of years. Medical terms and drug names are an unwanted part of our lingo now. Some of the particularly irritating ones being  CGRP, trigeminal nerve, prodrome, Aimovig, Topamax and Ondansetron (which also sounds like it could be one of Optimus Prime’s buddies).

It makes you a crazy person. I google treatments ad-nauseum, even to the point where I have taken new treatment plans to the neurologist for his approval (which, thankfully, he’s really open to). I try home remedies (the most successful of which is strict diet control of no gluten or sugar, and drinking fresh steeped ginger root throughout the day). I even feel guilty when a bad migraine hits…I feel like somehow it’s my fault that I’m letting the family down again. It’s horrible.

I always thought that when pain struck, you could just take meds, it’s that simple. But with migraines, it’s not. After a time, abortive medications (pain relievers and migraine specific meds) actually begin to have a rebound effect and give you migraines. So I can only take two lots of meds per week at the most if I want to avoid getting into an awful headache rut that can only be broken with steroids. This means that I will frequently go whole days with a bad head, unable to take meds, only to cave in the evening because it gets too bad. It’s a really hideous situation to be in.

It’s super expensive. The Botox treatments I currently receive cost around $1,500 out of pocket every three months, money which we don’t have, and it’s a tough pill to swallow (metaphorically). The new meds I’m about to try cost around $600 a month, so it’s about same. It feels like a kick in the guts spending every last penny on treatments to make life more bearable, when it desperately feels like a holiday would be an infinitely nicer thing to save for!!

It’s not all doom and gloom though, God has been really kind, and a couple of kind family members have pitched in to help out with finance when they can. Additionally, things really are MUCH better than a year ago…I now usually have to medicate only a couple of times a week when things get bad, and I have a number of helpful tricks in my wee toolbox to manage my head. The Botox has definitely made a difference, but not as much as I had hoped, so I’m going to be trying a brand new preventative drug that has just hit the market; the first ever preventative specifically developed for migraine.

Your prayers would be deeply appreciated. I would LOVE to be able to get back to normal life in time, to be able to make it through the day without needing to nap (sometimes more than once), to have energy to play with my boys, to no longer feel the PTSD sense of dread whenever the pain returns, to hang out with friends, and to get off the meds that make me feel like a walking zombie!

Much love,

Deb xx