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)
October 1st, 2009
Does this sound at all familiar to you? This is me, talking to me, inside my head:
So I stayed in and didn’t take the triptan – and about 10 my head was pounding and I felt nauseous. At that point I took the triptan, and some anti-nausea meds, and tried to go to sleep. I slept badly, with pain in my head nearly all night. I kept waking and checking the clock to see if 2 hours had gone by so I could take another triptan. Then I slept a bit longer and woke after 2, still in lots of pain, and took the second dose. Slept fitfully and around 5 noticed that the pain had let up a good bit. Woke with the alarm at 7.
So I called the court and told them I was ill and could not come in. I went back to sleep and woke up a few hours later, to this:
I’m not sure they ever shut up, those voices in our heads. But here I am, several hours later, head still hurting, trying to make what I can of the day. Just a Migraineur, intermittently impaired, working around it the best I can.
– Megan
Tags: internal dialogue, migraine, self care, self-doubt, triptans
Posted in Musings | Comments (14)
January 26th, 2009
We talked recently about telling the truth about our disease. When we do that, we need to come face to face with others’ expectations of us, and whether we’re going to try to meet them or not. In the face of our diseases, one of the things we must deal with is that we cannot be all things to all people. We must balance caring for others, appropriately, with caring for ourselves. Finding balance is never about reaching perfection and staying there, it’s always a process of adjustment and change.
This is a women’s issue because most of us women expect ourselves to keep a certain standard of order around us, despite years of feminism. We see ourselves as having to care for everyone. Research shows our brains are organized to multi-task and manage our immediate surroundings, much more than men’s. I have always lived at war with myself with my perfectionism coupled with an ability to be pretty organized but only if things go a particular way – I have trouble being flexible and still staying orderly. In the brief periods in my life when I lived alone I was pretty organized.
Living with 3 people with ADHD, while being chronically ill myself, has challenged my organizational abilities way beyond their limits and most of the time I am overwhelmed and just give up, but then the perfectionism pops in and I struggle up again and try to organize everything. And so it goes. Living with Migraine disease and the other chronic ills I struggle with has taught me something about when to give it up and say it’s not that important. I have also had to accept that my dear wonderful husband will work his tail off to feed us and run the errands and make sure the homework is done and the kids are well and happy and in bed, and he’ll try to keep up with the dishes and keep the mess down, but if I’m out of the action chances are I will get up to a mess because he can’t keep up with it on his own. I care how my home looks, and my pride has had to take some pretty hard hits, many times. Because no matter how bad I feel about the mess, my health is more important than how my home looks.
Lots of chronically ill women I know rely on their loved ones to shoulder a hefty share of work around the house, but lots more try to get it all done themselves, and run themselves into the ground. Letting go is an art. We need to let our loved ones know what we need, we need to communicate about what needs to be done and how best to split the work, and we need to accept that it won’t all get done. We will all, every one of us, die with things on our to-do lists. If we’re perfectionists, and we need to rely on others, we need to accept that things won’t be done to our standards. And live with it.
Chronically ill folk often report that their extended family members don’t understand – they don’t want to visit because our homes aren’t the way they expect. They come to visit and we are doing our best to make them comfortable, but there’s this sense that it’s all on top of something wrong – like icing on a mud-pie. Chances are they have no idea about what we struggle with on a daily basis, what it takes to be chronically ill and just manage the basics of life. Chances are we try to put on our game face and look like everything is okay, because really, who wants to complain all the time, or talk about all this negative stuff?
There’s no substitute for communication. We need to tell people that we’d love to have them visit (if that’s the case) but that they must take us as they find us, and we must lay down some ground rules. They need to understand we are ill, and we are doing the best we can. If coming to visit means pitching in, we need to let them know that. If they can’t accept that, maybe they shouldn’t be visiting.
We can’t expect to change people. Most people respond well to open, honest, uncritical communication. Some people don’t. Some people are toxic to us. A friend recently shared about cleaning her house for the visit of a very exacting and critical relative – one who would apparently not be satisfied no matter what. A key ground rule might be to establish your home as a no criticism zone. A really key part is knowing that you don’t owe anything to toxic people. You need an atmosphere that supports your health and probably the biggest piece of that is having the people in your life support your health. If you had a pet you were terribly allergic to you would be very sad and you would not blame the pet but I hope you would find another home for that pet! Toxic people are like that – you don’t even have to blame them. You just have to stay away from them – to stay alive!
Don’t let yourself be defined by those who criticize you, and don’t let being a woman mean you can’t sit down and rest. You need to take care of you, because without you, nothing else matters.
– Megan
Snake handler image courtesy of Robbie Jim.
Tags: chronic illness, Communicating, relationships, self care
Posted in Communicating, Managing | Comments (1)
January 15th, 2009
Here’s a New Year’s Resolution for you: Tell the truth about your disease this year! How many of us are walking around in a state of denial, not having told the truth to ourselves about our disease, or about what we need to do to manage it? How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don’t know the truth about our disease either?
What do I mean by telling the truth? It may be that many of us would be better off if we didn’t have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don’t live in that reality. Telling the truth doesn’t mean you have to deny your reality, or not deal with it. Quite the contrary, your reality may be that you have to work, and care for your family, but you can’t care for your home to the standards you have always had, or you can’t work the kind of hours you once expected of yourself, or you can’t micro-manage your family members but have to allow them to make mistakes and muddle through. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn’t some kind of nasty self-indulgence, it’s not “No I can’t take care of my child I have to watch tv and eat these bon-bons,” it’s “I must care for my well-being or there will be none left of me to care for others.” It means put on your oxygen mask first on the air-plane or you will both be dead!
Denial is what has us clean one more thing instead of resting, or ignore the migraine twinges instead of taking the medication to treat early. Denial is what has us try to be super-women and men, has us go on hosting huge parties in order to not disappoint the family, or do whatever we believe is expected of us, at the expense of our well-being. Denial is lying to ourselves about our own disease.
This may sound harsh, and believe me if you find yourself in a state of denial you have all my sympathy. I find myself there from time to time as well. It is human, and it will happen. The key is to practice telling the truth, to have it become a habit. You may not want to answer “How are you?” with complete truth in every situation – there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Come here and tell it to me, in a comment. Sign up for the e-course The Six Keys to Manage Your Life With Migraine (in the upper right corner of the page) and tell it to me there. Register for a relaxation or support teleclass and talk about it there. Go to a Migraine Forum and talk about it. Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.
And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.
Here’s a link to a great letter Teri Robert wrote to share with the people in your life to help them understand Migraine disease. I can’t promise you that every person in your life will understand and support you. If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There’s no way around communicating, scary though that may be. If I can support you, please let me know.
– Megan
Heads together image courtesy of Vera & Jean-Christophe; conversation image courtesy of John Wigham.
Tags: Communicating, denial, Migraine disease, self care, telling the truth
Posted in Communicating, Musings, Tips & Techniques | Comments (2)
May 23rd, 2008
That’s what I’m doing today. It’s 5:00 and I think I’ve missed status migrainous by about 4 hours. Status migrainous is a condition where a migraine has continued for 72 hours without a 4 hour complete break in
pain while awake. It is a serious condition which carries an increased risk of stroke due to long-term dilation of the blood vessels around the brain. I am lying in bed with my fingers crossed because my migraine seems to have finally broken after about 68 hours.
The pain started Tuesday evening and has varied from about a level 2 on a 1 – 10 scale to about a level 8 or 8.5. It has varied from itchy nagging pain all over my head to furious pounding pain in both temples. It has been a particularly sneaky persistent presence, sending me strange nightmares. I have woken up two mornings in a row with the sense of something awful sitting on top of my brain, waiting to pounce. I have used 4 doses of Imitrex on it. Finally today, after all of today in bed, most of yesterday, and half the day before; and after 4 expensive, befuddling and nauseating doses of Imitrex, I think the pain is gone. I’m afraid to move in case it’s just asleep and I wake it up again. For many of you, this will sound quite familiar.
Nearly all of my plans for the last few days have gone out the window. What have I accomplished? I did have an important business conversation with my husband. I did gather up a list of all the homework my son has missed while he’s been out of school with the flu. I did wash a few dishes here and there. I did about 20% of the business work I had on the agenda for the last few days. I helped my daughter find her uniform for work. I’m about to be really ambitious and dig up some pretty pictures to illustrate this post. Other than that, I have been taking care of myself.
What does that look like? Today, and the past few days, it has looked like sleeping late, staying in bed in my pajamas for much of the day. Today it involved not even taking a shower so as to keep my head quiet. Anyone who knows me will tell you how much I hate not taking a shower! It has looked like saying no to even talking to my family when the pain level was high. It has looked like keeping track of how long this migraine has gone on, diarying about it, and calling the doctor for help. I spoke to the nurse this afternoon and now have a plan in place for what to do if the migraine doesn’t break, or recurs, over this holiday weekend. I’m happy to say the Emergency Room is not the first line of defense in the plan!
I went on the My Migraine Connection forum to connect with my buddies over there and gripe about this long migraine. One of my friends told me she was proud of me for taking care of myself. It was a revelation to me, a welcome one, to realize that I have been doing that – taking care of myself!
After 30+ years of migraines, coaching others to accept their disease and build the best life they can around it, I still struggle with acceptance. After basing my self care on meditation and relaxation exercises and building my life around my illnesses, I still fight tooth and nail. I didn’t take an Imitrex Tuesday night because I wasn’t positive it was a migraine. Maybe I could have prevented the following days of pain if I
hadn’t been in denial then. Regret is pointless. Great thanks to Gret for reminding me of what I am accomplishing today. I am taking care of myself. The shower will still be there tomorrow. Chances are, so will the dirty dishes. And the newsletter I owe to you, my subscribers. And the garden beds to weed.
Wherever you are, whatever you’re doing tonight, remember to take care of yourselves. I hope for all of us a pain-free tomorrow.
– Megan
Tags: imitrex, Migraine pain, self care, status migrainous
Posted in Managing | Comments (2)
January 22nd, 2008
Here’s the view down the lane from me this morning – I took a chilly walk with Kimi. Snow is coming in a little while. I did all the things I should this morning, stretched, meditated, ate a light healthy breakfast, took my supplements and meds, stayed calm. Planned my day, did some work, took a walk. A morning of living healthy. (Go ahead, give me a gold star!) I’ll do that a few times and then I’ll think I don’t have to any more. Anyone else out there like me?
I’ve been thinking about what it takes to live healthy. Like everyone, I’ve been secretly hoping for the magic pill. Where do we get that fantasy from? Is it from fairy tales, a constant wish for the magic wand that banishes all ills, or the knight on the white horse to take us away, or is it pharmaceutical commercials (potential side-effects include loss of common sense, temporary irresponsibility…)?
But wouldn’t it be nice? Just give me the magic pill (once, mind you, I’m not interested in something I have to do every day, or refill prescriptions for, or pay co-pays ad nauseum…) and then I can live like everybody else.
Oh, like everybody else, huh? What does my fantasy mean by that? Hmm well I imagine everybody else can stay up as late as they want, as often as they want. They can eat sugar without getting hooked on it. They can drink coffee without revving their systems up so much they get migraines. They can live without exercise. They can drink alcohol. They can be around cigarette smoke. They stay calm cool and collected. They certainly never ever have to meditate, or breathe deep, or stretch. They don’t have to go to the chiropractor every two weeks, they never need a nap, they have abundant energy all day, their houses are tidy and clean… How much of the human race have I eliminated by now? I guess there may be one or two paragons like this somewhere, but I know I haven’t met many! Funny thing is, to live healthy with my conditions, mostly I have to do what common wisdom and the medical profession tells us we all need to be doing. The main difference seems to be: for those of us with chronic illness, the breakdown comes faster. We don’t have to wait 30 years for the heart attack – we get the migraine attack right now!
Living healthy with migraine disease, and chronic fatigue, and a chronic sinus condition, seasonal allergies, allergies to pain meds, and irritable bowel syndrome, hypothyroidism, periodic anxiety and depression, looks like this for me:
1) regular and sufficient sleep
2) a diet high in fiber, organic foods, fruits and vegetables, and low in dairy, refined sugar and flour and food additives
3) vitamins, minerals and nutritional supplements
4) thyroid supplements
5) natural, bio-identical hormone replacement therapy
6) antihistamines
7) a humidified house
8) flushing my sinuses with a neti pot a couple of times a week
9) triptans for migraine attacks
10) daily stretching
11) daily meditation and relaxation practice
12) journaling
13) keeping a detailed wellness diary
14) regular exercise – at least 5 times a week
15) chiropractic visits every other week
16) a life coach to help me stay on track
17) keeping in touch with my medical team about what’s working, what’s changing, what’s next
18) keeping a regular work schedule and managing my time and projects to keep my anxiety level low
19) other stuff I can’t think of at the moment…
If I do all this, I am less likely to get a migraine. I am less likely to catch every cold that comes down the pike and turn it into a sinus infection. I am unlikely to have an ibs flare-up and I don’t fatigue easily and I feel serene… and then I think I’m cured. I think somewhere in all that was a magic pill and I can have a great big cup of coffee with a cheese danish and stay up half the night and work without breaks… until the migraine slams me down again.
Or even worse, I get sick anyway, even though I did everything right, or nearly everything right, and then I think, what’s the use of working so hard to stay healthy?
So, here’s my commitment: One day at a time, I will live healthy. I will do it for the rest of today. Tomorrow all bets are off… (just kidding!)
Oh, it just started snowing!
– Megan Oltman
Live well and prosper!
pill image courtesy of [O*] ‘BharaT
checklist courtesy of Jon-Eric Melsaeter
snowflakes courtesy of Lin Pernille
Tags: managing life with migraine, one day at a time, relaxation practice, self care, vitamins
Posted in Managing, Tips & Techniques | Comments (2)
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