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Living with Migraine

The road is pain…

  • By Still Smiling

    The road is pain and the destination is loneliness and isolation. But then I realise I’m not the sole traveller undertaking this journey…and yet I feel lonelier still.

    Every time I visit a neurologist – recently I changed neurologists and he had some great lifestyle advice so I left his office feeling slightly overwhelmed but filled with hope.

    Hope that maybe the migraine reign of terror would cone to an end.

    This was just false prophecy. As I sit here, two weeks later, it seems, despite following his great advice, the migraines are worse than ever and I feel ever so slightly depressed, having had all my hope brutally taken away. I’m sitting at the end of a week-long migraine that steadily worsened over the course of the week – I’m not even sure if it was one or several – everything sort of mushed together.

    With no real improvement over the course of 8 years, iam I foolish still to hope? Is there any hope left? I’m a year away from my 30th bday and honestly, cannot imagine spending the rest of my life like this – the years stretch ahead of me, all dark,twisted and saturated with pain. Im not sure, it’s what I want or even if I can handle it- even if that does sound cowardly. I’m starting into a dark abyss one filled with pain, loneliness, and isolation and feeling like I forgot to bring the match box to offer that one tiny, flickering glimmer of hope in the dark….

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  • By Nancy Harris Bonk Moderator

    Hi Still Smiling,

    Thank you for sharing your very personal story with us. I’m sorry you are in such pain right now.

    YES – there is hope! Try not to get too discouraged, it’s only been two weeks since you’ve made the changes your doctor suggested. I’ve heard from many with migraine they feel worse before they feel better. It seems that because we have overly sensitive brains, the slightest change in our body’s homeostasis can trigger an attack. Try thinking of improvement in baby steps rather than giant leaps.

    Do you have a good support network , which is vital when we have a chronic condition (s). Depression and anxiety can go hand in hand with migraine, they’re called comorbid conditions meaning they can occur at the same time but are not caused by one another. Tammy, a writer and Patient Advocate here wrote her personal struggle that may strike a cord with you; https://migraine.com/blog/breaking-through-the-darkness/.

    Please let me know you are OK.
    Nancy

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  • By Still Smiling

    Thanks Nancy. Tammy sounds so strong. I’m OK – not good – not bad, just OK, but isn’t that most of what any of us can hope for? I worry that my thoughts are getting darker and came pretty close last night..

    I used to have a good support system in my husband but now I just worry that I’m a burden on him; I hate saying, as much as hates hearing, the words ‘o have a migraine’ or ‘I think I’m starting to get a migraine’. And the countless phone calls to come pick me up because I can’t make my own way home. Then there’s the fact that I can’t help out around the house as much as I should or with our son as much I should – but I do try, and I more than anyone want to just be able to do it all and be ‘normal’. Migraine-free.

    Then so much guilt where our son is concerened: not being able to always play with him, take him places or even asking him to play quietly all the time. He broke my heart the other day because I was dressing for work and asked innocently if I had a headache – is it fair to him to have a mum who can’t always be there for him? Am I just letting him down?

    I don’t much have anyone else around – we’ve moved a lot so I have little in the way of friends and my family have practically disowned me – as for my husband’s family, they have welcomed me well enough, but my migraines are somewhat the ‘elephant in the room’ having been accused of faking them – so we don’t discuss them…

    This is why sometimes, as self I deprecating as it sounds, I wonder if the whole world would do better without me – I would do better without this constant pain. I wish I was as strong as Tammy… And it does give me hope that things could change – but its very difficult to see how, when or even if…

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  • By Nancy Harris Bonk Moderator

    Hi!

    Thank you for letting me know you are “OK.” Your son loves you migraines and all. I can’t imagine you are letting your son down, being there for him is what he needs, and it sounds like you are doing that. I’ve shared some of the same feelings about motherhood and migraine you are experiencing while raising my two children who are now 26 and 21. Somehow we manage to make it work and do the best we can.

    Personally I put a lot of pressure on myself to accomplish things and when I don’t, I feel as if I’ve failed, which creates a lot of anxiety for me. During my therapy appointment yesterday we talked about this and how I’m goal/task driven. I’ve always been hard on myself, and now I’m going to try to redefine my goals and daily tasks and give myself a break – a totally new concept. This is going to take some work as I’ve been like this for almost 54 years! I share this with you because I do understand and hope you will be kind to yourself.

    I’m going to have Tammy come in and share some of her wisdom with you too.

    Please keep me posted,
    Nancy

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  • By Tammy Rome

    My dear Still Smiling,

    I was 29 years old the year that migraine became chronic. I had two kids, 7 and 3. That was also the year that my marriage started to have serious problems. Within 2 more years, we nearly divorced. During that time, I was a migraine disaster, a lot worse than you describe. I was in bed and/or vomiting more often than I was upright. My husband and my 7 year old daughter took care of me and my 3 year old son. I felt guilty, depressed, and very suicidal. I was angry at God and abandoned by my church family. It took me YEARS to restore my faith in God and humanity.

    No one sees me at my weakest, so they assume that I am strong. My strength comes from a loving family and 41 years of experience dealing with migraine in all its forms.

    So please try not to compare yourself to me or anyone else. Every one of us has experienced the indignity of hugging the toilet, drenched in sweat, with a pounding head, begging to die. We’ve all spend days, weeks, months, and years stuck in bed or on the couch while our family muddles through without us.

    You are doing a GREAT job. Even though I don’t really know you, I can say that because you have the courage to share your story, you haven’t quit, and you worry about your family. That’s what strong, courageous people do. Please keep talking and sharing. We’ve all been where you are and can help you through this.

    Much love,

    Tammy

    p.s. I have trolls for in-laws, too. 😉

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