As part of last June’s Migraine and Headache Awareness campaign, I wrote a guest post for The Unbroken Smile on living well with one of the world’s top 10 disabling conditions. If you missed it, you can read it on their blog. While you’re there, make sure to look around! They’ve got some pretty great tips on living with chronic pain.
Lately, I’ve been thinking about my life and the impact I want to have on the world. And, as I consider the list of things I’d like to accomplish, I’ve realized a disturbing fact – there are some things that I now doubt my ability to do.
These include the ability to:
- Commit to any high-stress job that requires long days in a typical office environment. This means many things I would love to do – such as going to law school and working as a PD, going to grad school and finishing up my neuropsychology degree, or opening my own financial management consulting firm for small businesses – are potentially out of the question forever. Fluorescent lighting, varied sleep schedules, and long, long hours all mean increased migraine.
- Make promises to my daughter about future events. Some days the migraine comes on full force, and there is nothing I can do to stop it. It doesn’t matter if she’s in a play, or has an award ceremony, or wants me to attend a field trip. I can’t do it. And, knowing this can happen, that I can be completely disabled at a moment’s notice, I don’t promise it. But, I wish I could.
- Pack my calendar. I can get a lot of stuff done in one day. I can write five articles, edit three chapters of a book, read two newspapers and two trade journals, research a big project, enter two poetry contests, help my daughter with homework, go to dance class, make dinner, balance our budget, pay bills, and spend quality time with my husband, all in one day. IF, it’s a good day. But, if it’s a bad day, if the migraine kicks in by 7 a.m. and ramps up to a level 7 or 8 by noon, I’m lucky if I get even one of those things done – let alone all of them. So, while I can crowd a lot of stuff into one day, I have to leave room for the bad days. And, this means planning for less than I feel I can accomplish, just in case some (or all) of tomorrow’s scheduled work has to be pushed off until the next day. And, I hate that.
There are, of course, more things that could be added to this list, but these are the big things. The things that make me feel less than able even when I don’t feel dis-abled. These are the things that remind me, on a near constant basis, that I am, in fact, chronically ill. And, on some days, I really, really resent that.
What about you? I know I’m not alone. What has migraine disease left you feeling less than able to do or accomplish?
Being held hostage by my body is (sadly) not an unfamiliar feeling for me, as I’m sure both other migraineurs and chronic disease patients of all kinds can understand. The things I can’t do when hit with a migraine attack can include: reading, watching a movie, listening to music, leaving the house, tolerating light, moving without pain, and speaking properly. I also can’t be anywhere with fluorescent lighting for too long, or out in the summer heat for more than a few minutes, without fear of setting off an attack.
When I was pregnant nine years ago, I felt much the same way. I had a troublesome pregnancy, and there wasn’t much I could do except come home from work exhausted and sleep the night away. I also couldn’t work out (my heart rate got too high), relax in a hot bath, or indulge in a much-needed margarita or glass of wine.
Now, my husband and I are considering having another child, and even though I’m not pregnant yet, I’m already feeling the effects of what lending my body to another human being will mean.
My 52-year-old mother died suddenly and unexpectedly just a couple of months ago, and I’m not sleeping well. My anxiety levels are high, and my exercise routine has been interrupted. All of which equal increased migraine symptoms. But, my neurologist (understandably) won’t prescribe me anything for sleep, anxiety, or pain, in case I become pregnant.
I understand that this is one of the trade-offs of pregnancy, but I’m not sure how I will be able to survive the coming months (until I get pregnant) plus the 40 weeks of actual pregnancy without medication. I have chronic migraine with aura, and it is quite likely that my migraine attacks will only increase during pregnancy. It would be beneficial to know how other chronic migraineurs have managed to make it through pregnancy. Have any of you readers suffered through pre-pregnancy and pregnancy medication free? How did you do it? Would you be able to do it again?
As always, I appreciate your comments.
It isn’t often that migraines get the attention of one of the biggest newspapers in the country. A few days ago, however, the NY Times posted an article on its popular health blog (“Well”) about the wide-spread prevalence of migraine disease and the difficulties migraineurs face.
A combination of statistics and patient stories makes the article a pretty good read. While we migraineurs likely won’t find out anything we didn’t already know, I did feel slightly validated while reading it. Maybe now more people will understand that a migraine isn’t just a bad headache.
Read “Migraine Miseries Push Patients to Ways of Coping” here.
Thanks to Kathleen Hogg over at The Chronic Pain Journal for letting me know about the article!
I began taking magnesium and CoQ10 supplements a few months ago. I think they’re helping, but since I no longer keep a migraine diary it’s kind of hard to tell for sure.
Do we ever really remember our pain accurately? I think about childbirth and the pains of pregnancy. Do any of us really remember how nauseous and exhausted we were those first four months? Can anyone truly remember the extreme pain of labor and childbirth. I think not.
We remember that it was hell. We remember that we were tired, that we hurt, that nothing could make us comfortable. But, we can’t truly describe the intensity of the pain. If we could, nothing could ever talk us in to having a second child.
I think migraines are like that, too.
I can remember times when I couldn’t get out of bed for days because of my migraine. I can remember laying on the floor, gasping in pain, crying. But, I can’t really remember what a “9” migraine feels like. Not truly. And, how do I know one 9 is the same as another?
I don’t. I suppose that’s the subjective nature of pain; it not only varies between one person and another, it also varies between a person’s own experiences. And, without keeping a diary, I’m not sure how much I can rely on my memories.
But, I can’t keep a diary anymore. The daily reminder that I’m sick, that I have a “condition,” is too much to take. It renders me incapable of forgetting about the pain for even a moment. Some part of me is always monitoring my pain levels and my symptoms so I can record the day’s events accurately. There’s no forgetting. There’s no ignoring.
What works for you? Do you keep a diary? If so, what kind? (Online? Paper?) How long have you been writing in it, or when and why did you stop if you used to keep one?
My mother died last week, and I am discovering that grief serves as a type of anesthesia to chronic pain. It is there somewhere, just behind my temple – lurking. I can feel it there, and yet, I can’t. It is ephemeral, outlasted by the intense pain of loss, overwhelmed by the grief of one left behind.
In moments of clarity, when my hands no longer shake and my legs stand firm, I worry that I am not taking care of myself as I should, that I will pay for this later. I know that next week or the week after when I am finally home, and the truth of my loss has sunk in but there is nothing left to do except move on – no boxes left to pack, no phone calls left to make, no papers to file – my migraine will come rushing to the foreground with all the intensity of a coal-laden locomotive.
But, what can I do? It is not feasible to do anything but survive at this time.
As some of my longer-term readers may have noted, I took a lengthy break from blogging a couple of years ago. Dealing with chronic pain can be exceptionally disheartening, especially when you’re talking about it, writing about it, and keeping a journal cataloging it on a regular basis. So, I quit.
I stopped talking, stopped blogging, and definitely stopped keeping my migraine journal. Trouble was my can’t-I-just-pretend-this-excruciating-daily-pain-doesn’t-exist mindset was a dressed up version of denial. Once I came to terms with this fact, I started blogging again.
Naturally, many of my fellow migraineurs also stopped blogging during that time. And, since then, new (and wonderful) blogs have popped up. So, today’s post is a shout-out to the new (and old) blogs I managed to find this week after joining the ChronicBabe Forum.
Newly added to the blogroll:
That’s all for now, but I’m always on the lookout for insightful, informative, and inspirational blogs. Does anyone have a favorite blog that isn’t listed? Please share!