With Chronic Migraine It’s About Well Moments, Not Well Days

By Holly Harding

1 min read

Life with chronic migraine brings a unique set of challenges. When we are ill with complex neurological symptoms more often than not, every aspect of our life is impacted (work, family relationships, social life, sleep, being able to follow through with commitments, etc). In this video, Holly shares how she has stopped waiting for well days and instead she embraces spontaneity while living in the moment.

We would love to hear about the ways you have learned to navigate life with chronic migraine so that we can learn from you. Please share your experiences in the comment section below.

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azreynolds Member
Good morning Holly, What a great way to start my day! Morning moments with Holly! 🌄 I've lived my life in partial days since I was forced onto SSDI back in 2015. Since 2003, I recognized that I couldn't do all the housework in one day, not only because of migraines, but also because of my back issues. As migraine went from episodic to chronic, I realize that I couldn't even clean half the house in one day, and that's when I started doing "a little something everyday", hoping to finish just one room. Now that we've downsized, I'm able to clean the house in two and a half days by dividing it into three portions. On the days that I'm not cleaning house, I try to cook big one pot meals that we can eat on for 2 days and freeze a portion for the days when migraine keeps me in The Dark. I keep a whiteboard beside my chest freezer listing each item and where it's located in the freezer(blue tub bottom, white tub middle, green tub top). Every Ziplock bag is dated with the meal listed on it. Sounds like a lot of work, true. But on those days when you can hardly keep your eyes open, it comes in very handy! For the moments when my migraine is not screaming, I try to walk my dog, paint or exercise. During these days I try to look at everything as if I wanted to paint it. I've mentioned before that I call this Mindful Appreciation and from these moments I create my Joy Shots to lift my spirit. There's a lot to pull from these days with all the spring flowers, but even in the dead of winter there are clouds and the shapes of trees to observe. Having so few days when we feel good, we really need to appreciate them rather than bemoan the days lost or be anxious over the migraines to come. Maybe Seize the Moment SHOULD be our motto. Regarding making plans for vacation or to visit family....I've put this off far too long because I knew that my hyperosmia would cause me to have migraines out in public thanks to perfumes and fragrances. But last summer my family went through the trouble of following my "perfume protocol," removing all scented products for weeks before I came just so they could give me a hug! Think about how many products had to be replaced. Fragrances are in everything, even makeup. I was humbled that they would go through all that for me. If we can get our family to truly appreciate our challenges in life, then maybe we can get them on board. It took me hiding for a decade before my family realized that I was not going to get better. At best, I was only going to maintain, and try to live within the realm that I could create for myself. Thankfully they were willing to go through the trouble to open my realm up to their homes too. Perhaps we can get all family members to eventually open their eyes to truly see our challenges. Great article once again. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="azreynolds" user-id="3677307"/> Thank you so much for sharing more of the way you navigate the world with migraine. You have learned so much about how to pace yourself with care to avoid a flare-up. Atop of that, you seek positivity along the way. Inspiring! Love it. Thank you for this uplifting guidance. All love to you- Holly (migraine.com team).
Peggy Artman Moderator
<inline-mention username="azreynolds" user-id="3677307"/> I can relate to what you are going through. Thanks for sharing your experiences with us. I like the idea you have about spacing the housework between different days. I do that, too, especially with laundry. I hope you are having a better day today. We are here for you. Peggy (Migraine.com team)
Sunshine20 Member
<inline-mention username="Holly Harding" user-id="3755969"/> Hi again! Hope you’ve been well. How can I reconnect with you? The website isn’t giving me an option to DM you anymore.
1. kaitlynsutton Community Admin
 <inline-mention username="Sunshine20" user-id="4735792"/> Hi there! We recently made some changes and have decided to scale back the private message feature. You still will be able to message the community admin (me!). Our forums, comment sections, and status updates haven't changed, and we welcome you to continue to engage with the community here. We do recognize support is integral to the <a href='http://Migraine.com' target='_blank'>Migraine.com</a> community, but private messages can be an easy way for scammers to target community members. It’s bittersweet to scale back this feature, but we want to ensure the safety of our community members is always the #1 priority. Thank you all for being such an active member in our community! - Kaitlyn (Team Admin)
silver Member
My migraine disease is weird. I think it seems more of a chronic kind, because I don't get those sudden attacks which are over and done in a few days, with severe head pain and vomiting. Instead, I get something that sort of creeps about for ages, then will gradually disappear for maybe even some time before kicking in again (usually for weeks or months even) Mine mainly affects my gut so I have been diagnosed with "IBS-D" as well; though sometimes I get constipated briefly, so it's technically more of an IBS mixed. But it affects all parts of my body...neck, lower back, balance mechanisms, vague nausea, sudden voracious hunger and thirst, food cravings for oily fish (!), emotions, general sensitivity to pain anywhere, exhaustion...etc. I don't know why but it always seems worse in the Spring, which is when it first started, hitting me out of the blue. I get a migraine "aura" which is a visual light display, which is mixed in with gut symptoms and dizziness, tooth pains, tongue pains, nagging twinges over my eyebrow, shakiness, disturbed sleep.... and all the joys ! (not!) So I manage each thing as best I can, adjusting my diet to find a balance with the gut symptoms, Sometimes I need more fibre, sometimes much less Generally I do what most people would not advise. I carry on regardless and do a lot of pretending. Weirdly, sometimes that works. Today for instance, in the midst of one of those bad phases, I went for a good walk. I felt so much better on the walk and quite strong in myself. It was only when I came home and tipped my head back to drink the last of my tea, that I came over all dizzy for a moment. My lower back started aching again, then the pain siddenly disappeared ! I can't identify food triggers so I eat ro suit my gut at any given time. I can't wait for it to get lost for a while at least. It is such a drag.
1. Nancy Harris Bonk Moderator
 <inline-mention username="silver" user-id="3723451"/> Thank you for sharing your experiences with us. I'm with you, I wish migraine would "get lost" too! IBS can occur with migraine. We have two other sites on IBS and IBD you may be interested in; <a href='https://irritablebowelsyndrome.net/' target='_blank' rel='noopener noreferrer ugc'>https://irritablebowelsyndrome.net/</a> and <a href='https://inflammatoryboweldisease.net/' target='_blank' rel='noopener noreferrer ugc'>https://inflammatoryboweldisease.net/</a> both of which discuss a connection between IBD and IBS and migraine. It sounds like you've come up with a good way to manage migraine. It seems just when I think I have things figured out, something new with migraine crops up!! Will you keep us posted on how you are doing? Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team 
2. Holly Harding Moderator & Contributor
 <inline-mention username="silver" user-id="3723451"/> Thank you so much for sharing some of your journey with us. You help others understand the comprehensive nature of migraine in your description- and how it's a neurological condition - not just a headache. It really can impact and affect us in so many ways. Interesting, too, how you mentioned pushing yourself, or pretending - and how sometimes that works, until you stop doing so and then get hit hard. I tend to think that has to do with distracting yourself, when possible, from the symptoms - there's sometimes a window of time in which this is possible to do - fresh air can help - or listening to something that keeps our minds from tunnel-visioning in on the pain and discomfort. For me, these techniques are always worth trying but there comes a time when I hit a wall and must acquiesce to the reality of the building attack - to stop being active, to pull the curtains and be still. Again, always grateful to hear someone else's story - to learn how others are navigating this challenge in their lives. Thank you for sharing- so glad you're with us. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
silver Member
<inline-mention username="Nancy Harris Bonk" user-id="3845796"/> Thank you Nancy, and I hope you are not doing so badly at the moment? I already joined the IBS community here and find it very helpful and friendly there. But thank you for that and I hope the link will help others who have a cross-over with migraine and IBS. Yes, of course I will keep you posted. I do okay for a while or am managing, then splat again! That is my usual style :/ I blame the Spring. I will most likely steady out in a few weeks.
1. Nancy Harris Bonk Moderator
 <inline-mention username="silver" user-id="3723451"/> I hear you! I'm just coming off a cycle of migraine after my last Botox. I also blame spring, the drastic change in weather doesn't help. We're in it together! Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team
silver Member
 <inline-mention username="Holly Harding" user-id="3755969"/> That is so true. There are limits with "soldiering on", and there are more severe manifestations of migraine than I have, And times when keeping going is simply impossible. I seem so different with mine. If I lie down in a darkened room I feel terrible. If I go outside I feel a bit better. Yesterday I think I stumbled on something interesting. My body was involuntarily taking a deep breath spontaneously at times. As if it was desperate for something which would help. This tallied also with my feeling improved when I was outside and moving (even though so horribly exhausted and feeling surreal) I think it was because I was taking in deeper breaths and fresh cool air. It made me wonder if some breathing techniques or 'pranayama' exercises (about which I know very little!)...could help with migraine? 
1. Holly Harding Moderator & Contributor
 <inline-mention username="silver" user-id="3723451"/> I think you're onto something there with the thoughts on the power of breathing. We actually have a number of resources on this topic that might be of interest to you: https://migraine.com/search?s=breathing%20exercises%20. And yes, I think we're of the same mind on the topic of the importance of fresh air for shifting one's energy - there are times I feel I'm in a terrible place and I'll have to take my dog out for a moment. While not powerful enough to stop an attack in its tracks, inhaling the fresh air does a world of good in giving perspective, and, if nothing else, can slow the cascade of symptoms. Let me know if the link to resources on breathing techniques proves useful to you. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
silver Member
<inline-mention username="Holly Harding" user-id="3755969"/> Thank you for the link to the article and short video about breathing exercises. Good breathing will definitely help stress and tension which can either trigger migraine sometimes, or make it worse when it's happening. And symptoms can be scary in themselves. But I started thinking about it more, and discovered this: <a href='https://migraine.com/living-migraine/my-experience-with-oxygen-therapy' target='_blank'>https://migraine.com/living-migraine/my-experience-with-oxygen-therapy</a> and this: <a href='https://www.hh-bayarea.com/hbot-blog-oakland/2020/12/22/treating-migraines-with-hyperbaric-oxygen-therapy' target='_blank' rel='noopener noreferrer ugc'>https://www.hh-bayarea.com/hbot-blog-oakland/2020/12/22/treating-migraines-with-hyperbaric-oxygen-therapy</a> (N.B. on the second link, I am not sure if I ought to post it as it does lead to a fascinating article about hyperbaric oxygen therapy for migraine symptoms, but is basically a commercial site where they take bookings, so please check the link and delete if inappropriate, and I am sorry if I shouldn't have put it on.) Anyway it struck me that maybe our "deep breaths of fresh air", and even exercise which circulates oxygen in the body might be clues to the body telling us oxygen will help? But I know when someone is feeling dire during an attack, most would not feel like going outside and moving about, and if light-sensitive it could make them much worse.
1. Holly Harding Moderator & Contributor
 <inline-mention username="silver" user-id="3723451"/> All good thoughts and reflections- I had heard about the oxygen therapy before- but hadn't made the connection to the feelings of clarity and wellness when one steps outside for fresh air. Fascinating. And of course, you're so right that for many, just the thought of stepping outside in the bright light during an attack is sickening. We are all so very unique and different in the way migraine impacts us and how we respond to various therapies. This is why it's wonderful to be curious and thoughtful about what works and doesn't work for us as individuals. I'm pleased you are following these threads! Good! Keep going! Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.

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