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How do I make my life less miserable? Existing with Chronic Migraine

How do I make my life less miserable?
I have been existing, not living, with chronic almost daily migraine. It is me and my cat in a tiny condo (and all that living in a charming old buildng brings). I might go outside 3-4 times each month due to migraines and pain. I am not on a preventative nor do I use devices due to adverse reactions. I am not able to afford acupuncture, etc. I have one medication that I ration and for the most part stops the pain. I do all of the standard self-care as well as therapy, meditation, music, TV, special tea that brings comfort, recognizing the good moments ...and where would I be without my fur baby cat. And there is still so much suffering and misery.

It would be so helpful to hear what others do to physically, mentally, and emotionally feel less miserable.

With gratitude,
Jenn

  1. Hi - Thank you so much for posting this invitation for others to give their thoughts and insights on the topic of how to manage life with migraine. You bring up a very real part of chronic migraine- when our lives start feeling like we are living on a postage stamp- (this may resonate with you and offers the idea of seeking a change in routine): https://migraine.com/living-migraine/pushing-through-limitations. Indeed, I have to remind myself to change things up in the small ways that I can handle. In the swamp life of migraine, we can't help but feel felled at times by a low or depressed mood. To loosen these oppressive feelings, I push myself out of my hovel and careful routines to see the world, connect with friends and family - sometimes knowing that doing so will result in an attack. I have tested the waters enough during my multi-decade life with daily chronic migraine to know that, despite all the careful steps I take to avoid it, almost every day will result in an attack one way or another. So, if I'm going to get one regardless of my actions, it can help to remind myself to live a little. Doing so, even in the smallest ways, can replenish my empty reserves and give me some perspective that helps me continue along on my postage stamp. I'm not sure what this would mean for you- but for me, it means taking my pup for walks in new places- along rivers and meadows - sometimes with friends or family in tow.
    Additionally, it takes a concerted effort at seeking and feeling gratitude in my life. For example, I'm grateful that, even though I was sidelined from a career I loved, I am so glad I don't "have" to go to a job every day - and that I am released from the pressure that can come with it. For me, living with chronic migraine means having to be spontaneous - jumping into life when the pain is low enough for me to engage. Making plans rarely works - and the endless cancellations break my spirit due to the apologies I feel compelled to offer those I am letting down. It also is about making a concerted effort to let myself off the proverbial hook of blame that we are so easily ensnared by during a migraine life. For me it also helps to focus on my pup- all she gives me- the beauty of her- the sensation of her fur in my fingers that so comforts me while I'm struggling. And today, my small way to stretch myself out of my routine means bringing my computer out to my screened porch with quiet peaceful music playing in the background while I write to you.
    All the small ways, the big ways, and everything in between. I also find such comfort in connecting with our community here- to be reminded on a daily basis that I'm not alone in this challenge. And, when I can't get myself to look up and out, I know that it's time to reach out to my therapist for a tune up.
    It sounds like you do have some wonderful self-care techniques that you employ. Are you seeing a migraine specialist vs. a gp or a neurologist? There are over 100 different therapies (preventative and rescue) that are now available to help treat migraine. It might be worth revisiting your options in case there is something out there that can help decrease the severity or frequency of your condition. I realize that's easier said than done as so many treatments are pricey and come with side effects that rival the migraine attack itself. Please give us some of your load by sharing and connecting - we are here for you and in this with you. I look forward to reading what others have to share on this front. Most warmly- Holly migraine.com team.

    1. oooh that imagery of always on a simmer! While at home, which is 95% of the time, I lean on an ice pack (occipital area) to regulate the simmering or bring down the boiling.
      I live in Boston near Fenway Park (baseball park) and in the summer they have a handfull of concerts - it is very cool 😀
      All my best,

      Jenn

    2. We keep unearthing ways we are twins. I also have an ice on the same spot you mentioned more hours than not (I have three ice packs that I rotate). How cool to live near Fenway! Hope your weekend brings low-pain days for you. Sending love, Holly (migraine.com team)

  2. - this hits close to my heart. Every day I struggle with this very problem. I saw my life taking a different direction, but here I am mostly indoors, under low light, with less noise, a very controlled environment, so as to manage my days with migraines - feeling as if I have been existing and ... not really living. I feel as if I am watching my days go by and waiting ... My SIL mentioned to me recently, as she has an extremely limiting chronic illness and just retired, that she is having a very difficult time adapting to this very different kind of life, nothing daily to do or having a plan, and that she is just squandering through her days, out of view.


    I think it is very important we continue to have our dreams and goals and move toward them daily, even if it's just a day trip, a new adventure, or a new activity. It may take a different path to achieve, but reaching out and grabbing the things that give us joy is invaluable. What are some goals or joys you have missed or wish you continued to pursue? What are some ways you, as someone suffering from migraine, can get there? There may be modifications, but keep striving ... for new ideas, different perspectives, greater understanding, clearer insight, joy, and miracles. How can you do this? Could you possibly help someone in your community, volunteer, or find an activity that you have been putting off? Participate in a community yoga or meditation class for an hour. These things have helped empty my days of monotonous and defeating thoughts and bring some light back. Thinking of you. I hope others chime in and offer their views. Warmly - Rebecca (community moderator)

    1. Hi Rebecca! Thanks so much for thinking of me. Wow - what a boook review. After the first paragraph I thought, I'll pick this up. Then the gut punch and knowing now I NEED to get this book - “this too shall pass.” But what happens when “this” never goes away?” I feel this strange combination of screaming, sighing, being angry and then deflated and then because I am having a good day (and it was 60 and sunny in Boston!!!) I said okay to that strange combo and now let's get back to the present moment and cherish this feeling of little pain - I can be so rational when I feel good 😀 Thank you again for thinking of me and sharing this book with me. I hope you are as well as possible.
      With gratitude,
      Jenn

    2. Hi Jenn! I've never heard of this resource either and would be interested to learn if it's helpful for you. I hope today continues as a low/no pain day for you! 60 and sunny in Boston in November!?! Wow. Sending love. Holly migraine.com team

  3. Ohhhh my I don't feel so alone in this migraine world !!!! I thought I was the only person suffering from chronic migraines !!!! The last 2 months have been absolutely hell I haven't experienced anything like that in my life I have experience chronic migraines but nothing like the last 2 months !!!!!!!!
    I finally found this forum to see what I would find I also live in a small condo and just got a new baby kitten but honestly thought that was a mistake but honestly she makes me laugh so much !!!! I focus on the joys and laughter and not so much on the pain.

    1. I went through 3 months of migraines and couldn't really remember the months of August and September I had maybe 6 good days from both months as I keep a daily log of migraines for my neurologist when I see her. Come October they started to lessen. I had just gotten a small kitten in September I don't even remember taking care of her I had to surrender her it wasn't fair to her because there were days I couldn't get out of bed many days. I cried for 4 months after that. My daughter and her husband had to come over and throw trash away get my mail etc. I feel for you I'm so sorry.
      I did a lot of crying but decided I needed to figure out what was happening. Some meds I can take are just too expensive for me. I had a nerve block down in my neck that went horribly wrong I can't even describe what happened but it was frightening I have a 3 disc fusion in my neck that has been redone

    2. Nice to hear from you again,
      Thank you so much for joining the conversation and sharing your support with us. Having a support network is so important.
      How are you feeling these days? Sending out pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member

  4. I would love to share a photo of her I didn't know you could share pictures on this site that's awesome

    1. Please submit a picture! Would love to see your sweetums. Warmly- Holly migraine.com team

    2. In case you need help posting a picture, you can see the button on the bottom right of the comment box when you write a reply. It says "upload image." You can only include one picture per comment, and one of our staff members needs to approve it before it appears. We usually get to it within a day or two, but if we don't, please feel free to poke us! 😀 Let us know if you need any help! -Melissa, migraine team

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