How I’ve felt on a bad migraine day the last few months is better than I used to feel on a good day. In the fall, I wrote a bleak post describing what a good day looks like. Seeing how little I got done on a good day (what I now know was a great day for how I felt then) left me so downtrodden that I didn’t post it. Now that I’m feeling better, I’m ready to share it.
November 9, 2013
Friday I enjoyed four hours of level 3 to 4 head pain and a surge of energy. I cataloged everything I did in those four hours in an effort to illustrate what I mean by a “good day.” It’s dismal.
- Bought two bags of groceries (drove 12 minutes round-trip). Unpacked the groceries and hung the reusable bags back in the pantry.
- Opened, read, and dealt with six pieces of mail.
- Entered two medical receipts into Excel for taxes.
- Put away the dishes that were drying on the counter. Emptied the dishwasher and put those dishes away. Hand-washed knives, cookie sheets, and water bottles, then set them aside to dry.
- Wiped down a quarter of the kitchen counter.
- Did a moderately thorough cleaning of the cooktop. Took the burner grills and knobs off, but didn’t disassemble the burners. Washed the knobs in the sink.
- Cleared off the rubble that collects on one particular kitchen counter. Found homes for the receipts, post-it notes, Kleenex packets, and other miscellany.
- Did one full load of laundry and ran a small load of shirts that still had stains on them. Draped the clothes from the first load over the dining chairs because the dryer wasn’t drying properly and I didn’t have the wherewithal to clean the outdoor lint screen in the dark. Hung up the four shirts from the small second load.
- Folded six washcloths and put them away.
- Put a stack of folded T-shirts in the drawer.
- Put the remote controls in the bowl on the coffee table.
This is a great day and it’s no more than an hour’s worth of work done in four. On my best days, I might get in eight hours of work; I get no more than half a dozen of those a year.
My house is not large and the clutter wasn’t particularly heavy Friday. Four hours is plenty of time to clean the house from thoroughly, from putting stuff away, to scrubbing all the hard surfaces, to vacuuming and mopping the floors. Instead, my list of accomplishments includes putting away grocery bags because even that is a triumph.
I have vastly overestimated my productivity over these last six months. I’ve said I operate at 50% of my mental or physical capacity on a my best days. Considering that I did an hour’s worth of work in four hours on a good day, 25% seems like a more accurate number.
I’m not telling you this to elicit sympathy or pity, but to illustrate just how vastly chronic migraine can affect a person’s quality of life. Even though my diet-related improvements seem revolutionary compared to days of accomplishing nothing, the improvements are meager quantitatively.
Having a migraine all the time wears a person down beyond reckoning. Even I can’t believe the impact and I live it every second of every day. Maybe that’s because I haven’t wanted to face the truth, maybe it’s because the truth is unfathomable.
This post brought me to tears. It sounds so familiar. I am in my early thirties and haven’t had a headache free day for over fifteen years. I struggle with the feeling that I am “young and should be able to do more.” My husband, friends and family are all so amazingly supportive, and do nothing to reinforce this feeling. As a naturally positive person, I battle with myself over letting those around me know that I am suffering vs just pasting on a smile and getting through the day. I am glad I stumbled across your blog, sometimes I feel that I am being a wimp when I cannot do even simple things. It’s nice to know that I am not alone in my limitations.
Brianna, I’m so sorry you can relate. I can relate very well with the description you give. You are definitely not a wimp and you’re not alone. You’re also not alone in doubting yourself because of chronic illness — I have lots and lots of experience! You may appreciate this post I wrote for Migraine.com on internalizing the stigma of migraine: http://migraine.com/blog/internalizing-the-stigma-of-migraine/.
Take care,
Kerrie
I can completely identify. When I quit my job my goal was just to do the grocery shopping & cooking. Even that seems difficult & I can’t accomplish many times. When I look back, I wonder how in the world I made it through work once my migraines turned chronic! It does wear on you after awhile.
There are lots of ups and downs, both in what a person is able to do with chronic migraine and in the emotional reaction to the illness. Some days I beat myself up for not being able to do more and other days I’m thrilled by how much I can do. And, until recently, there hasn’t been much difference between those types of days!
Wow…I am weeping as I read this. I know this feeling all to well. Thank you for articulating it so well Kerrie!
I am crying…. this is my life. And I feel so GUILTY.
I’m sorry, Shannon. Guilt is so complicated. Please remember you’ve done nothing wrong and aren’t to blame. I know it is still hard when it feels like you’re letting people down, but you are doing the best you can. Hang in there.
Kerrie
Shannon, I just remembered something a friend told me when my migraines were at their worst and I was awash with guilt: You’re doing everything right. Reminding myself of this has carried me through many years. Here’s a post I wrote about it a couple years ago (the middle paragraph is holiday-related, but the rest is generally relevant). http://www.thedailyheadache.com/2011/12/youre-doing-everything-right.html
Kerrie
I’m crying after reading it too — like you, this is my life, and I feel SO GUILTY.
I look in the kitchen cupboards and think that if CPS came they’d take my children (I cannot handle the lights at the grocery, even for 5 minutes). I tried to do my 9 year old’s math homework with him today and had to stop after 5 minutes. I cancel almost every plan I make, and I make as few plans as possible because I feel like a wuss when I cancel. I’ve spent 5 years working on an advanced academic degree and may never, ever be able to finish it because I cannot THINK any more.
I hate when people ask how I am. Do I lie, or tell the truth and risk the pity/advice/doubt/disappointment?
Thanks for a safe place to share and know that none of us are alone.
I’m sorry you’re having such a difficult time, Marley. Figuring out how much to disclose is definitely a struggle. I’ve found it I have to gauge the other person fairly closely to determine how much to say — which is exhausting and nearly impossible with the brain fog of migraine.
Grocery store lights used to be a killer for me. There’s a tint called FL-41 that makes them much less problematic for some people. It has worked wonders for me. (Disclosure: The tint worked so well for me that my husband and I started TheraSpecs, a company that makes eyewear with this tint. I don’t want you to think I’m trying to sell you something, but wanted to let you know what has helped me.)
Larissa & Maisie, I’m sorry to hear you both can identify with this. Hang in there.
sounds a lot like my life as well . . . I get it.
I live with a daily headache myself and understand how you feel completely. I haven’t had a headache free day in over a year. I have days that I feel like I’m not going to make it. Thankfully my faith has gotten me through each day.