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Archive for the ‘Communicating’ Category

Counting Down to Thunder

May 25th, 2009

In this season of thunderstorms, I am finding my head more and more like a barometer, predicting the electric activity in the atmosphere.  I hope you are enjoying your Memorial Day weekend – mine has had its ups and downs with the weather! I did want to share a poem of mine with you – it won an honorable mention in the Putting our Heads Together Migraine and Headache Poetry Contest this year.

Counting Down to Thunder

Counting down to thunder,
how many miles the storm lurks in the night?
Lightning pierces slumber,
grasp the shattered shards of sleep.

Where the welcome rain?
Where the soothing break in summer’s pain?

Storms without at last pile high upon the storms within –
thunder’s crash inside my skull tore life from many days.
Come tempest wash it clean again.

– Megan

Lightning image courtesy of Ian Boggs.

Tags: migraine, poetry, weather triggers
Posted in Communicating, Musings | Comments (0)

Time for a Change in Medication

May 23rd, 2009

I am stubborn and it takes a while to convince me. At this point I have to finally admit that Topamax is not helping me very much. I diary very carefully and keep statistics on my Migraines, and I can say that since I have been on the Topamax I’ve had about a 20% reduction in my Migraines and overall head pain. Better than nothing, but not much to write home about.  I started on 25 mg in the evening, tried that for a few months, and the first two months saw my Migraines go from 8 – 10 per month to 5 – 6, but I think that was a fluke, because every month since then has been back up in the 6 – 8 range, which is average for me.

My doctor suggested I take the dosage all at night, so that any sleepiness and cognitive side effects would be mostly worn off by morning. This was okay as far as it went, but I discovered after a while that I was having an awful lot of evening Migraines. I also learned that Topamax is pretty well out of your system after around 22 – 23 hours. So the level in my bloodstream must have been getting pretty low by evening, and Migraines were breaking through at that point. When I pointed that out to my doctor, he said that he wasn’t too concerned about it “just for headaches,” he’d be more concerned if I were on the medication for seizures. I have to say I’m getting a bit concerned with a headache specialist who uses the phrase “just for headaches.”

I decided to split the dose evenly between morning and evening and the Migraine preventive effect definitely increased somewhat, but the cognitive side effects became much more noticeable. So much so that after a month on 75 mg I decided it was intolerable; I was getting next to nothing done in the course of a day. So my doctor was certainly right that taking it all in the evening lessened the side effects, it just lessened the main effects as well! I went back down to 50 mg two weeks ago.

But even on 50 mg, I’ve been so slow I am hardly getting anything done and I have almost no days where I am full of energy. I just don’t feel like me, at all. I cut down the Topa to 25 yesterday, as per schedule with my doc. Well I took this morning’s half pill (12.5 mg) and felt all my energy and alertness just drain out of me within about 15 minutes – okay, now I’m eager to be done with the stuff!

The problem is where to go next. My doctor is recommending amitryptaline, an old tri-cyclic anti-depressant. Some people experience sleepiness, fatigue, and weight gain on it. I read on line that some of the top Migraine specialists don’t prescribe it because it is “primitive.” It’s actually off the market as an anti-depressant, but for Migraine prevention is prescribed at a much lower dose than for depression. On the other hand, some people experience no side effects.

I’d like to propose some alternatives to my doctor, but I’m feeling a little overwhelmed by the research involved. I look at side effects lists and I don’t like any of them. I read others’ experience but I know that what was true for them won’t necessarily be true for me. I just know that 6 – 8 Migraines a month is too many. I’ve had worse, and many of you out there live with worse. But I am sure I can do better!

– Megan

Still looking for that magic pill!

Block head image courtesy of Stefan; magic pill image courtesy of [O*] ‘BharaT.

Tags: migraine prevention, Migraine preventive medication, migraine specialist, Topamax
Posted in Communicating, Managing, Medicine | Comments (7)

Keeping the Faith

May 18th, 2009

I haven’t posted in a bit and I find myself feeling a little guilty about it.  The past few weeks have been busy, but that’s not unusual, and they have contained several Migraines, but that’s not unusual either.  My life is more complex than I like.  If I was my own coaching client I might advise myself to simplify.  Since I can’t get outside my own head sufficiently I don’t know what I would suggest cutting out.  The fact is that times are tough economically, and my family is not exempt from that, and I have several businesses to keep up with, a family, a house, and several chronic illnesses, and it’s a lot.

I do know, though, what works.  I know I need enough sleep, though when I feel like I didn’t really have any fun time all day, it’s hard to put down my novel or turn off the tv, or tell my darling daughter (who is 18 and likes to talk late in the evening) I need to go to bed.  I know I need a walk or some exercise in the morning, though when I haven’t slept well it feels like I need the extra bit of sleep more, and when work awaits it’s hard to remember that I will focus better and have a better attitude if I exercise first.  I know I sometimes need a nap after lunch if I want to avoid a Migraine or fatigue.  I know there’s no point in sitting at my desk trying to force myself to focus if my brain won’t do it – a break: a brief walk, a brief snooze, a ten minute clean-up in the house or office, any of these will refresh me and help me return my focus, and time spent trying to force myself is time wasted.  I know at 5:30 I need to leave my desk and focus on my home and family.

I have to confess, though, that knowledge is not the same as action.  I know all these things, but I don’t always do all these things, especially in the face of my anxiety – over finance, over my illnesses, over my daughter leaving home in 4 months, you name it.  Doing the right thing, when I don’t feel like it.  Now that takes faith.

Some days we get up, and we have no energy.  Saturday was like that for me; weather triggers have become much more prominent for me this year and thunderstorms were threatening all day on Saturday.  I felt oppressed – I was in Migraine pro-drome all day.  And so (with some encouragement from my wise husband) I went for a walk.  I did not want to go for a walk.  I wanted to crawl under a rock.  The exercise helped to restore my perspective, raise my endorphin level, and give me the energy I needed to enjoy the day. Going for that walk was an act of faith.

Keep the faith! What do you need to do to keep yourself on track, even when you don’t feel like it?

– Megan

Tags: exercise, Migraine triggers, weather triggers
Posted in Communicating, Managing | Comments (2)

Great Poetry inspired by Pain

April 28th, 2009

I’m really impressed by the winning poems in this year’s Putting Our Heads Together Migraine and Headache Poetry Contest, over at My Migraine Connection.  I don’t impress that easily when it comes to poetry – these are an exceptionally well written bunch, lyrical, moving, interesting, sometimes funny, sometimes wacky.  I guess it’s only fair to let you know I have an honorable mention in there, but I’m not saying all this to boast.  I’m very happy to be included but I think mine is far from the best.

I’m in the midst of a not very creative Migraine at the moment – some Migraines leave me able to write eloquently and some leave me pretty wordless, you know? I guess it’s a question of which part of my brain the storm is passing over.  I’d love to be able to tell you more about what moves me in these poems, and why, but it’s beyond me right now.  Would you go read some, and come back and share your favorites with me?  I’m particularly fond of the fourth place entry, “Pain Breaks Like Teeth” by Kate Brady, which opens

Pain breaks like teeth into rice cakes all over the floor.  My pieces aren’t swept up because I haven’t cleaned in weeks.

Enjoy!

– Megan

Tags: migraine, poetry
Posted in Communicating, Weblogs | Comments (0)

Migraine and Headache Poetry Contest

March 22nd, 2009

The ninth annual Migraine and Headache poetry contest is going on now at MyMigraineConnection.  Teri Robert, patient advocate and Migraine expert on MyMigraineConnection.com, has kicked off the “Putting Our Heads Together” Poetry Contest. The contest seeks poetry on how Migraine disease and/or headache disorders affects your lives. You can submit up to three poems, in any style, for the contest – the more creative, the better! To enter the “Putting Our Heads Together” poetry contest, visit: Poetry Contest.

As those of us who blog on Migraine can tell you, writing is a one of many creative outlets that can help you cope with this disease. Make art out of pain, and help others find fellowship and understanding. Don’t worry if you think you’re not a poet. Poetry is painting pictures with words – hold your brush lightly, don’t think too hard, don’t force it, let it flow. Rhyme, or don’t rhyme, play with the rhythm and music of the language. I hope to see you in the contest!

– Megan

Tags: headache disorders, migraine, My Migraine Connection, poetry, Teri Robert
Posted in Communicating, Weblogs | Comments (0)

Being Chronically Ill, and Feeling Well

March 5th, 2009

I woke up feeling well, and well rested, before my alarm went off this morning. That may not sound like a big deal, but it is very unusual for me, and worth commenting on. I went to bed last night with a Migraine that hadn’t fully resolved, and with a queasy stomach, which I thought was nausea from the Migraine. The head pain was completely gone this morning but now in early afternoon my stomach has gone back to feeling a bit queasy, so I am wondering in retrospect whether the stomach gripe yesterday was Migraine nausea or IBS or whatever else this may be that I am feeling today. Having multiple chronic illnesses is like that. Most of the time I’m grateful if nothing really major is going on. It’s rare that some degree of minor ick isn’t happening, and it’s also rare that I can sort it all out and say definitively what is bothering me on a given day.

I felt so well that I set my Facebook status this morning to say “Megan Oltman is feeling really well for the first time in weeks.” Within a few hours I found myself musing on what exactly “feeling really well” is, whether it’s a moving target, and whether it’s a claim I can make. I’m not feeling as well as I was when I got up this morning. On the other hand, I don’t have a Migraine, my stomach is only a little queasy with no major pain or cramping, I don’t feel fatigued, I am mentally clear, I am not congested, I am fairly energetic – this is a good day! I might even color it pink!

I have a Wellness calendar which I color code to indicate how well I am on a given day. This allows me to keep statistics and track trends. I calculate how many Migraines per month I have, how severe, how long they last, what triggers them and what I do to treat them. I calculate how many days I am sick but functioning, how many days semi-functioning, and how many completely out of action.  Each type of day has a color. Days I feel great I am “in the pink.”  Then I calculate percentages of wellness and illness for a given month, for two and four months trends, for a year.  Yesterday I caught my statistics up and discovered that 2008 was my worst year for wellness since I started tracking.  Not that I couldn’t have told you that by gut feel, too, but it’s a rude awakening to see it in black and white and pink and orange and brown… I really think I deserved a pink day after that.

A dear friend, who lives far away, and who I don’t talk to nearly often enough, read some of my writing recently and told me she was surprised to hear me describe myself as having been chronically ill for the past 14 years. She thought I must be uncomfortable talking about it, or why had I never told her? Laura’s a perceptive one, and of course it has been uncomfortable to talk about, especially in the first 8 or so of those years where I was trying to figure out what was wrong with me, blaming myself, thinking I was a hypochondriac, all the things that so many of us do. Now I think it’s not so much discomfort as just a long story to catch people up on. That’s part of what I try to do here. I am chronically ill. I have chronic Migraine disease, chronice fatigue syndrome, irritable bowel syndrome, multiple allergies, and chronic, or at least frequently recurrent, sinus infections. The good news is that I am actually up and functioning about 75% of the time!

February was a bad month. I was sick 14 out of 28 days, and that doesn’t even count days I was okay all day but was knocked out with a Migraine in the evening. Today I got out for a walk. I am clawing my way back to the top of the mess in the house and on my desk, and feeling caught up with my work again. The sun is shining, the snow is melting, and I feel well. Pink? At least pinkish!

– Megan

Tags: allergies, chronic fatigue syndrome, chronic illness, chronic migraine, irritable bowel syndrome, sinus infection
Posted in Communicating, Musings | Comments (2)

Coping with Fatigue

March 1st, 2009

It’s my second day in a row where I feel achy and tired all over and just can’t get going.  I’ve had my 8 1/2 to 9 hours of sleep; I have been taking it slow and easy.  This kind of fatigue is a common reaction for me when I have travelled or otherwise exerted myself over several days.  I guess a 3 1/2 hour drive to Washington, an evening of training, a late night, a day of lobbying with a Migraine at the end of it, a morning meeting then another 3 1/2 hour drive, then 2 busy working days, count as exerting myself.  It feels as if the tiredness stores itself up in my muscles and doesn’t drain out for days on end.

It used to be that I felt like this every day, five or six years ago.  That was before I began taking thyroid supplements and bio-identical hormone replacement therapy.  It was also before I began practicing good sleep hygeine to manage my Migraines – getting enough sleep and the same amount, at approximately the same time, every night.

I have learned not to push myself when I feel this way.  I will recover faster if I rest and take it slow than if I try to power through and get a lot done.  It’s hard, though, to cope with the mess around me and not be able to do much about it.  It’s hard to cope with the reality that I have a lot of days like this, and I can’t get done what I once could.

My primary doctor diagnosed me with chronic fatigue syndrome about six years ago; his treatment approach to it is mainly to seek to balance my hormones and that has helped a lot.  Coach Debra Russell of Artist’s Edge helped me too; she and I traded coaching and it was Debra that taught me that when I am fatigued, I need to rest. Period.

Now I find myself wondering what else is available.  As I work with migraine sufferers and other chronically ill folks, I have read some more of the chronic fatigue and fibromyalgia literature.  I have to admit to a certain level of denial rearing its ugly head for me once again – I don’t want to face the possibility that I might have fibromyalgia as well.  Of course we all know how silly this is (and denial always is silly, powerful and destructive though it may be) – because if I have it, I have it, whether I know it or not, and it’s knowledge that is power, not ignorance.

Well, friends, I make my promise to you – I will go read up on cfs and fibromyalgia and find out what else I should be doing to take care of myself.  Today it looks like I’ll be getting the taxes ready from my semi-recumbent position. Nice and restful, eh?

– Megan

Tags: bio-identical hormone replacement, chronic fatigue syndrome, Debra Russell, fatigue, fibromyalgia, migraine, over-exertion
Posted in Communicating, Managing, Musings | Comments (0)

Avoiding the ER

February 16th, 2009

I narrowly averted an Emergency Room visit yesterday. I’m not really sure if I should be saying that proudly or with embarrassment.  The fact is that I have never yet been to the Emergency Room for a Migraine.  It had never occurred to me until I began studying up on Migraine a few years ago that it was even an option. I don’t know why – I just figured, it was pain, you just put up with it.  Since then I’m happy to say that although my Migraines are frequent, they have not often been severe and they don’t often last more than 24 hours.  I have had half a dozen Migraines where I was within an hour or so of deciding to go for emergency care, but the pain abated, the Migraine resolved, and I averted it.

When should you go for emergency care? If you have a Migraine that continues for 72 hours without a 4 hour break in pain while awake, you are in status migrainous, a dangerous condition which carries an increased risk of stroke. Before you hit that 72 hour mark, seek emergency care to break the Migraine.  However, my headache specialist has told me that if my usual abortives are not effective on a Migraine, if my pain levels are unusually high, or if the pattern is out of the ordinary for me, I should not hesitate to seek emergency care.  What you want in the emergency room is probably not narcotics, which are generally not very effective for treating Migraines anyway, what you want is one of several intravenous treatments which will actually break the Migraine cycle. Here is a list of recommended IV treatments at My Migraine Connection.

I woke Friday morning with a severe Migraine. After 2 doses of Imitrex it subsided somewhat, the pain went from about a level 7 to a level 4 and I thought it was resolving.  I still had pain when I went to bed but thought it would fully resolve while I slept.  I woke Saturday morning with pain at about a level 2.  This could still be a Migraine in the process of resolving.  It grew a little worse throughout the day and I gave myself another Imitrex injection in the afternoon. Again, this knocked the pain level back enough that I thought it was probably resolving. Yesterday when I awoke the pain was severe, around a level 8, and pounding.  I took another Imitrex injection, and a reglan, an anti-nausea medication.  Around 10 I took an oxycodone – a narcotic I have as a rescue medication.  A few hours later I took the last Imitrex injection I am allowed for the week.  At this point, the Migraine was almost 60 hours old.  If it did not respond to that last Imitrex, I was bound for the ER.  The combination of the oxycodone and the Imitrex put me to sleep, and when I woke up a few hours later the pain was down to about a 2, the pounding had stopped, and it felt like I was on the mend.  So I did not go.  Today my head feels a little sore, as if it was bruised, but I am not sensitive to light or sound and I believe I have moved on to the post-drome phase.

Did I make the right choice? I don’t know. I’d be more confident talking about this if I didn’t feel deeply reluctant, even fearful, about going to the Emergency Room.  I’m not sure why.  Yes, I’ve heard horror stories about Migraineurs being turned away and mistreated as drug seekers. I’m prepared to go in with my list of IV meds and my assertive husband and tell them I don’t want narcotics, I want something that will break the Migraine. I will also go to the ER at the hospital where my headache specialist practices, where they will call the neurologist on call who will have access to specific instructions about what to give me. I have been treated in several Emergency Rooms for several things and yes, had my life saved there. I do have some life-threatening medication allergies – maybe that’s what makes me nervous. Maybe it’s the old perfectionist’s reluctance to let anyone else be in charge – especially when my life is on the line!

I feel like I was saved by the bell, yet again. I hope that if I had felt no relief from those two meds in the early afternoon yesterday I would have gone off the ER. I believe I would have – Danny was prepared to take me, and I don’t think he would have let me off the hook at that point.  One of these days I’m going to have to get it over with and do it.  Please tell me about your ER experiences!

– Megan

Tags: emergency room, emergency treatment for Migraine, iv treatment for Migraine, severe Migraine attack, status migrainous
Posted in Communicating, Medicine, Musings | Comments (10)

A Woman’s work is Never Done – So Stop Doing It – Take Care of You

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)

Telling the Truth about Your Disease

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.

• They need to know if you are a Migraineur that you have a neurological disease which you cannot control.
• That when you have a Migraine attack you experience extreme pain, nausea, dizziness, whatever the particular symptoms are for you, and that you must treat it and avoid light, sound and stimulation until it passes.
• They must know something of the dangers of leaving a Migraine untreated.
• And they need to know that you are not doing this on purpose, to avoid being with them, or work, or obligations, that you wish you didn’t have this disease, that you appreciate everything they do for you, and that you need their love and help and support.

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)