December 14th, 2009
For a number of years, my husband and I hosted a big post-Christmas holiday gathering for my extended family. This gathering had gone on at my parents’ house for many years prior. Each of the smaller nuclear families (mine, my siblings’, aunt & uncle & cousins’) would have their own Christmas Day at home, and then sometime afterwards everyone would get together for a big collective meal and gift-giving. Since we all live several hours apart, this would generally turn into a weekend-long extravaganza, with many people sleeping over for several nights. The part where we were all together generally involved 14 – 22 people.
My family gets along well, and while some readers may roll their eyes at the thought of so many relatives gathered, it has been a largely joyous occasion. When my parents sold their big house and moved on to an apartment and then a retirement community, my sister took on hosting Thanksgiving and we took Christmas. We cut the expense, noise, tumult and confusion of the gift giving by drawing lots for gifts to adults, and cut the cooking difficulties by doing some degree of pot-luck.
But… I went on hosting these events some years beyond when some family and friends were questioning my ability to do it. I have been living now for about 14 years with chronic illness, and when hosting big events, there have been predictable outcomes. I would wear myself out, either with clean-up and preparation, or with running around taking care of the guests in my home, or with cooking, or with trying to keep up with the mess generated by my husband’s enthusiastic (delicious) and whirlwind cooking.
My challenged immune system would hand me an illness or infection a majority of the time. Or my sensitive nervous system would react to the added stress and noise and confusion by hitting me with a major Migraine. Or both. I would try to compensate by planning better, systematizing everything. This would both create more work for me and make my husband crazy due to my micro-managing. And then there were the crowds themselves for gift-giving or major meals, where I never do well. My head would be spinning in no time, my anxiety level would hit the roof with the noise and over-stimulation, and I would become cranky and short with people. I would spend some part of the celebration closed up in a room by myself in pain, and inevitably the guests would have to pick up a lot of the work it took to get through the weekend.
We moved four years ago to our current home, which is about 35% smaller than our last home. We did a huge renovation on this house and part of our planning was around how to accommodate a big crowd for Christmas. The time we have been in this house, however, has been the same time period as the worst of my chronic Migraines. We hosted one Christmas two months after moving in, with many things still in boxes and the construction not quite complete. We hosted one other year. When we put many tables together to sit down for a meal, you could not leave your place at the table without 2 or 3 other people getting up as well. When we tried to open presents in the front room with the Christmas tree, some people had to stand in the next room and look on. Another year we tried doing an abbreviated gathering when some family members were away, only inviting a few others. I had mixed feelings and was not clear with everyone about this, and hurt the feelings of those left out.
Last year, with tears and soul searching, we bowed out of hosting. We went to my sister’s for two big holiday gatherings, and we’ll be doing it again this year. My home will stay quiet; our Christmas day will be simple and relaxed; we will be with family in a less stressful space. But… I miss having my family here. I miss sharing my life, my things, my space with the people I love. In answer to the title of this post, this is what we are doing to celebrate and still have me take care of myself. But… I’m running 2 weeks at a time without a Migraine these days, and have more energy, and I have to admit I am thinking about how to take the whole thing on again – maybe next year. We’ll see.
How do you celebrate and still take care of yourself?
– Megan
Tags: chronic illness, holidays, Migraines, self care, Stress
Posted in Communicating, Managing, Musings | Comments (1)
December 6th, 2009
The theme for the December 2009 Headache & Migraine Disease Blog Carnival is “Advice on & experiences with reducing holiday season stress.” This will be the Blog Carnival’s second anniversary issue, so please consider joining in! I’ve missed the carnival myself for the past few months but I’m planning a post this time. We all know that Migraines can make our holidays much harder – let’s share how we cope! To participate just use the form on the carnival web site or contact Diana Lee over at Somebody Heal Me.
– Megan
Tags: blog carnival, holidays, Migraines, stress management
Posted in Managing, Weblogs | Comments (1)
December 3rd, 2009
Teri Robert at My Migraine Connection reports today on a study on use of sumatriptan (Imitrex and generics) and naratriptan (Amerge) to abort Migraines during pregnancy. The article is well worth a read. Migraines, Triptan Safety, and Pregnancy. The study is preliminary, but indicates that the overall risk of birth defects is not raised significantly (from 4% general risk to 4.6% risk in the study) with use of sumatriptan. There was not enough data to draw a conclusion as to use of naratriptan. This is potentially good news for pregnant Migraineurs. Although the results are preliminary, it’s well worth discussing with your doctor if you are experiencing Migraines during pregnancy.
– Megan
Tags: Migraines, pregnancy, triptans
Posted in Current Affairs, Medicine | Comments (0)
December 2nd, 2009
My daughter had her wisdom teeth out yesterday. Once the anesthesia wore off she started feeling pretty serious pain. She took her first Lorcet and called me on the intercom about half an hour later, sounding panicked – she needed more pain meds, right now! We got her some ibuprofen, but tried to explain that the meds take a while to take effect, and to give it a chance. Today she is in bed with a swollen face, pain and nausea, quite miserable. We’re bringing the ice packs, the medications, the mushy food, and trying to comfort her the best we can.
I’ve been thinking about the nature of pain. At nineteen, my daughter has never had surgery before, never had a broken bone or other serious injury, and the only serious illness she has had was the chicken pox at age four. Her pain today is real and I can’t be the judge of how much pain she has. Her pain may be worse because unfamiliar. When I was her age, I had had: Migraines for at least six years, a broken arm, stitches on my face, major abdominal surgery, the mumps, the chicken pox, scarlet fever, the measles… Pain and I were old acquaintances (I won’t say friends). I have written before about how you never get used to pain. Pain is, in some ways, continuously and horribly new every time, every moment. But at the same time, pain can become familiar, and for that reason, perhaps less frightening.
The most severe pain I can remember was when I broke and dislocated an elbow. I went into shock, I believe from the pain. Both my labors were quite painful, as I had an unproductive pattern of contractions, which came two or three in a row without pause, and each set didn’t do as much work as one normal contraction. Childbirth pains are different, I think, because any pain you experience is for something, something big and very important, and you know there is an end in sight. At twenty-nine I fell and herniated a disk and lived for years with nagging, stinging pain in my low back and right leg. I have also had Migraines where the pain was so intense I felt moment by moment as if I could not stand one moment more, where all I could do was rock myself and sob, to quote a Migraine buddy of mine. I also had my wisdom teeth out at twenty-two and I don’t remember how that pain compared, but I do remember two miserable and very drugged up days.
I have learned, though, that something changes when pain is familiar, when it is not mysterious. Yes, frequent severe pain is debilitating, exhausting, dis-enheartening beyond belief. But at the same time, with familiarity it can lose some of its power over us.
What do I mean by that? This is difficult to talk about. Pain is real, but at the same time our experience of it is subjective. It’s not “all in our heads” in the sense of being imagined. It is not produced by neurosis or by being weak or hysterical. But at the same time, we can change and effect our experience of pain. When my Migraines became very frequent, I learned a practice of deliberate relaxation, based in yoga, biofeedback and guided imagery. A part of the practice is to look at pain head on – to be very aware of the experience of pain. Not to fight it or try to pull away from it, but to meet it, recognize it, describe it and observe it. In that process we get some detachment from it. Sometimes we can reduce it significantly, or make it disappear. Even if that doesn’t happen, we can make it much easier to bear.
I teach these relaxation techniques to Migraineurs and others with chronic illnesses because I believe we can truly make a difference for ourselves when we learn to focus inward. I believe we should fight for better treatment, strive and work to understand and manage our own systems, but when faced with pain we must practice a kind of acceptance. I’m not talking about being a doormat or giving up. I am talking about looking the pain in the eye – saying yes, there it is, it feels like this, it is this much better or worse than any other pain, it is located here, it behaves like this. Observing it, allowing it to be and allowing it to fade.
I’m not saying this is easy. Don’t ever let anyone tell you you should “just” learn to live with it. There is no “just” about it – it’s hard and takes continual work. I use relaxation zealously in the tough times and then I slack off, and have to pick it back up and get back in practice when the next challenge comes along. Overall I have developed an awareness of my system and its ups and downs. I have less pain in my life, and the pain has less effect on me, than before I began these techniques.
There may be some kind of threshold level beyond which the rules change, or become distorted. I haven’t experienced really frequent or chronic severe pain. Six years ago my Migraine pattern suddenly increased, from a monthly menstrual Migraine plus one or two big ones a year, to three or four major Migraines a week. That was the closest I have come to experiencing truly chronic pain. And three or four times a week I felt something like the panic I heard in my daughter’s voice yesterday. Nowadays pain doesn’t panic me. I may get cranky and resentful, but sooner rather than later i say to myself, Okay here it is again. Be with what’s so, and do what I can to help it ease or pass.
I am learning a new kind of pain as I adjust to fibromyalgia. My body has become a pain amplifier, and a small pain can grow outward with ripples over a day or more until I hurt everywhere. I am having a flare-up today. I ache from head to toe. I am grateful that despite the allover aches, I don’t feel the constant severe pain I hear of from some with fibro. I am practicing what Migraines have taught me, to pace myself, to push only gently, to be with the pain, not to fight it, to know that this too shall pass.
I’m hoping for a better tomorrow, for me, for you, for my daughter. In the meantime, I will be with what’s so. My arms ache and I’m going to rest now.
– Megan
Wisdom tooth image courtesy of Steve Montgomery; broken elbow image courtesy of H Dragon.
Tags: fibromyalgia, Migraines, pain, pain levels, pain management, relaxation techniques, wisdom tooth extraction
Posted in Managing, Musings | Comments (3)
December 1st, 2008
How was your Thanksgiving? We just got back from a very relaxed five day trip to my sister’s house, where the extended family descends for an annual Thanksgiving extravaganza. There are a lot of reasons to love it. My sister and brother-in-law and nephews are warm and welcoming and they pull out all the stops to accommodate everyone. Danny and I bake pies and cook some side dishes and load them in the car with ourselves, our kids and our luggage, maybe some fruit and wine, and off we go. We don’t have to clean the house (not that it couldn’t use it). We get a mini-vacation from the worries of our daily life. Their house is set up so that even with a crowd, the upstairs rooms are pretty sound-proof, so if a Migraineur needs a quiet retreat, there is one.
I am very thankful at Thanksgiving time, for the loving and accepting, funny, intelligent and interesting family I have, the fun times and wonderful food we share. I have many blessings to count. I have never managed to travel to this particular fest, however, without at least a little pang of wishing it were different. I wish I could host an event like this at my house. I wish that I could host any event of more than a handful of people for more than a few hours, without getting a Migraine. I wish that my home was orderly, organized and clean to the point that preparing for overnight guests wasn’t such a huge task.
The internet and the newspapers right now are full of articles on how to have happy holidays on a shoe-string, or how to enjoy the holidays without the stress, and I don’t need to re-invent the wheel. Over at My Migraine Connection you can read Teri Robert’s interview with Marcia Cross on Holiday Parties with Migraines. Coming up on December 8, the December Headache & Migraine Blog Carnival will be posted at Somebody Heal Me on the topic of “Maximizing Your Enjoyment of the Holiday Season,” and there will be lots of good reading on the topic, I’m sure! (If you’d like to submit a post for the carnival, the deadline is the midnight Friday, December 5th, and you can submit your post at this link at Somebody Heal Me.)
What I’m here to say is – the holidays don’t have to hurt your head. Like me, you may find there are things you have to give up. I conceded Thanksgiving to my sister years ago, since she loves doing it so much, but for most of the past 6 years we have hosted a big holiday weekend at our house around New Year’s. We won’t be doing that this year. Having that many people in my house, and that much noise, for an extended period of time, is a whole series of Migraine triggers for me. I end up missing a chunk of the celebration, I’m not much of a hostess, my family feels bad for me, and I’m in pain that often lasts days after everyone leaves.
I was surprised to find myself in tears when I told everyone we would not be hosting this year. It’s not like it was unexpected! The truth is that it is hard to give up on something we want to do. What we can do is to look below the thing itself, and see what is important to us, and how else we can express that.
When you look at your holiday season, think about what is important to you, and how you can express that without hurting your head. One holiday party may be much better than five. You may not have to wear yourself out to cook huge meals – choose one or two things that are important to you or your loved ones. The quantity of toys will mean less to your kids than the time you take to stop and play with them.
I gave up trying to be Martha Stewart years ago, but as my Migraines became more frequent I have had to give up more. So where we used to make six kinds of Christmas cookies, maybe we will make two. Where we used to have 18 people for a holiday weekend with a big dinner, we will ask a smaller group to join us for just dinner on Christmas day. Where we used to climb on the roof and hang lights, we light a few windows. In our family we have always celebrated Hannukah and Christmas, since we have a mixed background, but several years ago we became clear that our kids didn’t need gifts every night of Hannukah and under the tree and in their stockings! We buy less, and light the candles to remember our heritage and hope in the darkness, rather than as a reason for eight more gifts.
Festivity is great fun, but it can also be addicting. Advertising tells us to do more, buy more. Many people find that however much they spend and do, they still fall short of the “perfect” holiday they imagine in their mind’s eye. As Migraineurs, we need to go easy on ourselves. Whether or not you’re hurting financially this season, you don’t need the added stress of worrying about whether you have bought or done enough. A little can go a long way. What is most important to you about the holidays? Is it time with loved ones? An expression of peace and hope? Find ways to express what is important to you, that don’t hurt your head. Remember to get regular sleep, eat regularly, avoid your Migraine triggers, and enjoy the joys of the season!
Peace!
– Megan
Sliced turkey image coutesy of Roland Tanglao; advent candles image courtesy of Per Ola Wiberg; menorah image courtesy of Andrew Ratto.
Tags: Christmas, Hannukah, holidays, managing life with migraine, Migraine triggers, Migraines, Stress, Thanksgiving
Posted in Managing, Musings, Tips & Techniques, Weblogs | Comments (3)
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