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Living with Migraine

The Transformation of Suffering

  • By AnneDreamsofPainting

    I’ve been thinking a lot lately about how we can find meaning in our suffering – bear with me, this is a long post. I’m new to this community – I’ve posted this on the CMA FB site, and thought it would be a nice way to introduce myself to this group. I’d love to hear what you all have to think about this 🙂
    I have NDPH w/migrainous features, and/or chronic, daily, intractable migraine, possibly cluster headaches as well. I woke up one day, 7/17/2012 with a migraine, after never having had one before, and it has never gone away since. It is there every minute of every day for almost two years now. It is usually quite intense, somewhere between a 6-9 most days. I’ve gone through a million medications, treatments, hospitalizations, alternative therapies … nothing has worked yet. Lately, I’ve been focusing more on how to live with this, rather than focusing all my energy (and always being frustrated) trying to cure this.
    To begin, I’ve been wrestling with this idea of what i’m calling “radical acceptance.” Meaning, that I stop using up so much of my energy fighting the reality of what IS – which is that I am sick, I am in pain. This is my reality, and it may not change, no matter how unfair or unexplainable or horrible it is, no matter how much I think my life “should” be different. If I can move into acceptance around that, I seem to free up a lot of mental and emotional, and probably even physical, energy to focus instead on taking exquisite care of myself. By acceptance I don’t mean a resignation (I saw a blog about this on migraine.com today as well), and I don’t mean that I give up hope that I will get better, I don’t give up advocating for myself and researching new treatments. Just a shift in perspective from the questioning and focusing on the unfairness of it all towards simply saying, yes, this is my reality at this moment.
    Then, the focus shifts to allowing some measure of peace, of sanity, of serenity, possibly even of joy, to emerge. Is it possible to have moments of joy despite extreme physical pain? Is it possible for suffering and joy to exist together, letting each arise spontaneously and in their turn?
    My therapist and I have been talking a lot about staying in the moment with the pain and stopping the mental story that accompanies it. For example – “In this moment I have intense pain.” End of story. I’m trying not to add my usual story around the pain, which goes something like this -“I have intense pain, and I can’t do the things I want to do with the people I love, I’m always going to be miserable and everyone is going to stop loving me because I am just this fat lump on the couch in the dark in pain, and I am not worth love if I’m just a sick fat lump.”
    Slowly but surely, I’m finding that it’s possible let go of the story associated with the pain. Instead, I’m attempting to redirect all that energy that was spent in the story and the unfairness and the misery, towards cultivating a relationship with this pain that benefits me.
    How can I become more aware of the ways in which this pain makes me deeper, stronger, more courageous, more empathetic and compassionate, more loving, more creative? How does this shape me? How is this a metaphoric death – or an alchemical “putrefaction” – which must always occur before the new form – the gold (in alchemy), or the insight, or the new way of being in/seeing the world – can emerge? I’m studying for my PhD in mythological studies – which means I study the stories of humankind throughout history and across all cultures, in the many and varied forms that they show up – religion, myth, literature, art, music, film, etc. I’ve learned that the most common element/structure in story/myth/creative work, is a metaphoric death of the old self – often through immense trials and suffering – followed by a metaphoric rebirth/transformation, which provides some insight or boon to bring back to humanity. Joseph Campbell called this The Hero’s Journey. And he fully believed that we all enact our own hero journeys over and over – on a smaller scale than the epic ones we see in myth and books and films, but a hero’s journey nonetheless.
    So, I’m trying to think of this as the chapter in my journey where I go down into the deep, dark, scary elements – I have to fight the dragon, slay the beast, be swallowed up into the belly of the whale, journey to the underworld, wander in the desert (these are all different ways of metaphorically portraying “struggle”), etc. This phase of the journey can be tortuously hard and can last for years, while also seeming to be unexplainable and pointless when you’re in the middle of it – such as Job’s horrific suffering and beseeching God for answers and relief. Despite how horrific this illness is, I do believe that it is transforming me and teaching me. I am also coming to believe that even if the physical illness and pain never end, even in the midst of that there can be some relief from the emotional/mental suffering.
    I believe that this illness holds the possibility of guiding – or dragging me against my will into the deepest darkest caverns of my soul. This is the place that holds my treasure, which has been called a million different things, such as: connection to a higher power/God, connection to my highest self (or the divinity within), the holy grail, salvation, faith, trust, acceptance, serenity, profound and beautiful mystery, or even, simple, small insights that change how I view this experience or how I relate to others and myself.
    I guess that was a really long way of saying that I’m trying to reframe/re-write my narrative, from a tragedy of pointless suffering, to a tale of transformation and redemption in which which this suffering is no longer the enemy, but is an important and powerful path of transformation. It is the fire in which I will be melted down, and reshaped from the embers. It is in this transformational fire that I find meaning and purpose in my existence and my illness.
    To be clear, I am in no way saying that we deserve, or even need, this horrible suffering in order to become something better than we are now. I mean it in the way that this alchemical gold, or treasure within, is always already within us. We simply need a path to recognize it. The raft that gets us to the other shore takes many guises. We can step aboard voluntarily through spiritual practice, creative endeavors, pursuing our passions, etc. Sometimes, however, we are pulled under into the abyss and depths through crisis, illness, struggle. Then, we have the opportunity to reframe that struggle and use it as our life-raft to the other side, rather than letting it drown us.
    I certainly am not able to reframe or be positive about this all the time, or even most of the time. This excruciating, never-ending pain is horrific, and there are times when all I can do is get through the next minute because the pain is so horrible. But I’m hoping that there is a path I can find that gives me meaning and joy, even in the middle of this horrific pain.
    What do you guys think? Do you find meaning, or purpose, to your pain and suffering? Is it possible to do that even in the middle of horrific pain? Is it helpful?

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  • By Nancy Harris Bonk Moderator

    Hi Annebelle27,

    Thank you for sharing your very personal journey with us. Yes, I think some of us do find purpose and/or meaning in life during periods of extended pain. However, there are those who seem unable to get beyond the pain. In my opinion, it takes work to come to terms with chronic illness and we all do it in our own time..

    There is hope, however as some with migraine become episodic after being chronic. In fact we have an article on this very topic https://migraine.com/blog/will-my-chronic-migraine-ever-become-episodic-again/.

    Again thank you for sharing, I hope others come in a comment on this important topic.
    Nancy

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  • By Pendragon

    Annabelle, I used to hope to find some meaning through my migraine, that at some point I’d figure out why I was suffering like this. I still occasionally think it’s possible, but most of the time, I couldn’t care less why, or what it might do to make me a richer, deeper person, I just wish it would go away and never come back.
    Also, Annabelle, what symptom(s) do you have with your migraine?

    Nancy, that article you posted was quite interesting, but what if you’ve never been episodic? My experience was quite different to most other people who seem to be on this site. I didn’t go through a process of gradually having more days on than off, or whatever. I woke up one morning with head pain (or a headache, still not sure on the difference) and this was my only symptom for about four years, but it was constantly present. While (the article states) that only 1 day separates Chronic and Episodic, that doesn’t have to be the case. I’ve been chronic for as long as I’ve had an issue, and it’s been 24/7/365.25. The article seems to give hope but as it’s titled “become episodic AGAIN”.

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  • By AnneDreamsofPainting

    Thank you Nancy and Pendragon, for sharing your perspective on this.
    I couldn’t agree more – this, like most things in life – is a process. There are minutes here and there, sometimes an hour or even a day or two, when I can believe in the transformation inherent in the process of suffering.
    And then, there are so many days where it just seems like pointless, meaningless, suffering. I have not had the experience that I realize the potential for transformation and then I am always able to see it that way. It’s more of a comes-and-goes, arises-and-falls sort of realization. I can only hope that those moments of (what seem to me to be) clarity, continue, and that perhaps they even build on themselves. But there are also tons of times when I am in so much pain that it completely overwhelms me and I have no ability to see through it or past it to any kind of clarity or transformation. This is the question that I’ve been grappling with: is it possible to find joy and meaning even in the midst of extreme suffering?
    I certainly don’t have the answers as to how we shift perspective, especially on the days when the pain is really horrific – with is most of the time for me. It sounds like we have similar experiences Pendragon – I woke up one day with a migraine (I’d never had one before), and it has never gone away since. It’s there every minute of every day, or, as you put it, 24/7/365.25, and almost every day I’m between a 7-9 on a pain scale. I have horrible nausea nearly all the time, and dry heave a lot, but never really throw up. I haven’t worked or driven a car in nearly two years now, and most days I can’t even walk on my own, and I get really dizzy from the migraine. I’ve been home-bound for about a year and a half now -I spend my life in the dark on the couch. It’s horrific; a terrible way to live, to exist really. It would be nice for it to go down to episodic, but since it never started that way, it doesn’t seem likely for me. But who knows? These things tend to be completely random and out of my control – it seems like that in my life anyway.
    I didn’t mean for the original post to be condescending or seem preachy. I want to be clear – acceptance (for me) is in no way resignation. I still adamantly believe in advocating for yourself, researching and trying new treatments and medications, searching out doctors and specialists, etc. It is not a giving up. Just a letting go of my beliefs around what my life should or should not look like.
    Similarly, I should point out that just because I see the potential inherent in this deep suffering, does not in any way mean that I think we deserve it, or need it to become better that what we already innately are. I’m not in the fundamentalist positive thinker camp – I don’t believe that this illness, pain, and suffering are a result of my not thinking positively enough to manifest health. I also don’t believe that this illness is a physical manifestation of psychological stuff – I do not think that all illnesses are somatizations of psychological or spiritual stuff. I don’t believe that I signed some contract in the heavens before I was born stating that I needed this experience in this lifetime in order to grow.
    I simply mean it in the way that this happened, it is my reality – we can never know why, why us, why now, etc. But, we can use it as an opportunity. This post was just a way of putting the things that I’ve been thinking about/experiencing lately out into the world, and to see if fellow chronic migraineurs feel the same way. Thank you both for you comments and insight on this. I’m still undecided if joy and meaning are possible during the excruciating pain, and not just as a perspective that comes later, after we have healed, or if it’s possible now, in the middle of the pain. Thanks 🙂

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  • By Pendragon

    Hey Annabelle,

    I’m sorry if my reply came across as being harsh, or in some way to be having a go at you. I didn’t mean to put it that way, but having read back over it, I can certainly see why it came across that way.

    I think that joy and meaning are possible during the pain, but I struggle to find any, and more so as it drags on. I think part of finding that joy is a shift in thinking. In clinical nursing there are two “thinking paradigms”. The sick person, a person who believes they’re generally unwell, and the healthy person, who believes they are generally well. These people may have the same condition, but their perception of the condition, and the rest of their life (or lack thereof) around the condition can define the way in which they cope, and how they experience life.
    The experience of the unwell person is defined by their illness, and their life is based around it, and it can be a difficult perception to break.
    Similarly, the experience of the well person is defined by other factors, social, economic, etc. These factors will almost certainly be affected by a medical condition, especially one as severe as migraine, however I think part of managing this perspective is to keep in mind the other factors in your life as much as you can. This may be especially hard in your case, as you said you’ve been homebound for about a year and a half, spend most of your time sitting in the dark, and this certainly limits other factors to try and use to improve your thinking, however that doesn’t mean you can’t enjoy what you have. I don’t know what you have, I have no idea about who you are as a person, what you do for fun, or even just to relieve the boredom of sitting around in the dark, but whatever it is, if you can shift even some of your focus from your illness onto these things, it’s likely to help. And, you may find, that as you shift little bits of your focus from your illness, it starts to effect you differently psychologically (because, let’s be honest, it may not have been triggered by any psychological condition, but sitting in the dark at home for a year and a half has a good chance of triggering a psychological condition all by itself, depression + migraines are comorbid conditions) and you might find these rare glimpses of hope to become less rare. And you might find that you find more things to enjoy.
    I guess, what I’m trying to say is that I don’t think (and really have to hope) that you have to wait until the pain is gone to find meaning in it, or joy in life.

    I would just like to again apologize profusely for the tone conveyed in my previous post. It was not my intent to be offensive.

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  • By kmripple

    Annebelle, I promise I will respond to your post. But what you’ve written hit so close to home, I need to gather my thoughts to reply properly.

    In response to your question of whether we can find joy in the midst of extreme suffering, I think it is possible. Although a bit different, I met the man who became my husband a month and a half before one of my brothers, who was 33 years old, died in a car accident, at the scene of the accident, so we weren’t even able to say our goodbyes. In the months after, it was really hard for me to reconcile the intense pain I felt for the loss of my brother with the intense happiness and joy I felt when falling in love my hubby.

    I promise I will reply. And if you want to talk, send me an email. : )

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  • By kristisprague

    Hi, all. It is so healing to read the words you have written – healing for my spirit. I feel a part of something larger than myself and my pain issues.

    I have Chronic, Daily, Intractable Migraines and was formally diagnosed with Fibromyalgia last fall. I felt so afraid about what my life would be like from then on. Would I still be able to be a present parent for my kids? What about my significant other? Would he still desire a relationship with me? How could I judge myself more positively? (Ah-ha! The most important question was that last one!)

    Once I answered that pretty scary question about judging myself in a positive way, and practiced at it, a shift began to happen for me. It is amazing to me how a change in perspective and acceptance of myself has changed my level of joy, ability to be in the present moment and to let go of fears.

    My pain levels normally hover around a 5, migraine plus Fibro. A few days of the week, the pain roars up to a 8-10, and with some luck, a couple days each month, I experience pain as low as a 2. I experience joy and sorrow at all pain levels. A dear friend of mine once gave me a gift by saying that it is helpful to see something beautiful everyday, to hear something beautiful and to move in some way the feels good. When I am at high pain levels, I do this, and I find joy. Other small sources of joy are noticing my cat nearby, hearing my teens laughing, feeling how cozy my pillows and blankets are, smelling the cedar that my love smudges the house with. Joy is possible. Sorrow is inevitable. It is when I am most mindful, I notice I am most joyful.

    One last thought… I have been practicing something new on moderate pain days. I notice the pain, feel it, “look” at it, say ‘hey, I know you,’ and then get on with my day as best as I can, taking breaks and medication as needed. I am finding that this works very well for me. Instead of collapsing with the pain, I am moving through it and living my life. I have been practicing this for two months and know that my energy is better, that I sleep better and that my feelings of confidence are up.

    Wishing all of you happiness~ Kristi

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  • By Jules2dl

    I am not a philosopher. I have never really ruminated on my pain and how to transcend it. What I know about my migraines is that because of them I have been broken. My health, my life, my relationships, my ability to go to school and to go to work have all been broken by migraine.
    What I know about being broken is that God makes us strong in our weaknesses.
    What I know about being broken is that if we choose to, we can use our own broken-ness to help others who are broken to heal, and that this is a great blessing.
    I’m going to start training as a Stephen Minister next month so I can use my experience with chronic pain to help others who are going through a difficult time.
    It certainly is possible to experience the whole range of emotions in spite of our migraines, if we don’t get caught up in self-pity and anger at God for our afflictions. I think everybody has something to put up with in this life. I’d rather have migraines than a whole lot of other chronic illnesses I can think of. But just because someone else may have cancer, doesn’t mean our headaches don’t hurt, if that makes sense. Sometimes I still get mad at my head, case in point: last month I had tickets to see my favorite Christian band, Casting Crowns, in concert. I had a migraine of course, and I was really angry about it too. It all worked out though. Migraine takes away a lot of things, and although it may change our choices, it doesn’t take away our free will.
    Julie

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