Tag Archives: working with disabilities

Personal

Living with chronic migraines – but you don’t look sick!

10 Comments

It’s nearly 8:00 am and I’m showered, dressed, have a cup of coffee and a load of laundry in the washing machine. I wish this could be the case everyday. I love early mornings. But alas, another migraine kept in bed most of the day yesterday. It’s not even the migraines anymore. It’s the dizzy spells and nausea that come with it. It literally comes and goes. One moment I’m sick as a dog, the next, I’m ready to get my day going.

This is the part I have trouble explaining to doctors. I did some research and migraines have now been declared to be as debilitating if not more so, than strokes or heart attacks. That gives me a bit of relief to know that I’m not alone in the struggle. I see my doctor next week for a follow up. I’m hoping we can go back to the drawing board on what medications to try. The mirtazapine does nothing for me. I gave that up a couple of weeks ago. It just made me sleep 18 hours a day. And who can be productive on that schedule? I also read one side effect is weight gain. Which is the opposite of what I want.

I think I’d like to try the amitriptyline again. It’s one of those drugs you can take as needed and you don’t need to constantly increase the dosage. The Zomig has stopped working. I can’t stomach the Cambia powder. And before you even suggest it…

Nope. I’m not going to be talked into Botox injections. For one, even with 80% coverage of benefits, it would cost $200 every twelve weeks. And that’s money I just don’t have right now. Or like ever in my current line of employment. My rent went up. So did the power bill. And it seems, everything else like the cost of food is on the rise too. Does it ever really end?

One the reasons I’m still off work is that my former doctor had requested that I work from home on a permanent basis. WCB disagreed with this decision. I was put back on the employer’s benefit plan. But that will run out soon. If I don’t get on long term disability, I’ll have no choice but to return to work. The caveat?

My employer refuses to let their staff work from home on a permanent basis. Our Premier is pushing people to go back to work as soon as possible. There’s just no compassion really. People don’t care if you’re sick or living with a disability. They’ll cite performance issues to push you out.

So, I’m looking at all options to carry me through while I figure things out. In a simple world, if I could just find work I could do on my own schedule from home, that would be amazing. The hardest part in the world right now is keeping to some kind of regular schedule.

Last night for example, I wound up getting out of bed around 1 am and I’ve been up since. I lazed in bed most of yesterday. Sometimes a migraine can feel like a stroke. When you lift your head or open your eyes, you instantly feel sick or fall right back into bed. I think the vertigo might be the worst part of it.

Part of the problem with migraines is the whole “you don’t look sick” or “you’re not sick 60% of the time”. But what people don’t realize is that even you’re not in migraine state, the rest of the time, you’re in that fog or hangover state. Sometimes that part is even worse than the migraine itself.

My worst migraine in my life happened after a trip with my friend to Calgary to see a concert. I wound up in the hospital with what I thought were stroke like symptoms. Every time I lifted my head up, or opened my eyes, I got sick. I mean, I had to call 911. I could the look of the paramedics face when they said, “Oh, it’s just a migraine.”

I felt validated when I nearly puked on the guy’s shoe. They finally believed me when I said I “got sick every time I opened my eyes.”

Good days have been far and few in between. And even though it’s dark and dreary outside, I feel like I can get a lot accomplished today. I forgot how much I love early mornings. Watching the sun rise. The world is quiet. There’s very little traffic. It’s serene. We have lots of trees around which means lots of birds. Even the gulls don’t get up that early in the morning.

And so, this is where I am this Thursday morning. Thinking about the future. Trying to reach out to former colleagues, friends and network as much as I can on the good days. And asking you, my dear readers, to pass on the word that I’m looking for work in marketing that I could do from home.

Do you live with migraines? If so, what have you found that works for you for treatment?

Living Well Series

Never miss a post – subscribe now!