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Posts Tagged ‘chronic illness’

How do we Celebrate and Still take Care of Ourselves?

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

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Posted in Communicating, Managing, Musings | Comments (1)

Socialize my Medicine, Please!

September 23rd, 2009

I went to a business lunch & learn presentation today, given by a very nice insurance agent, all about health insurance. He covered the history of health insurance, how we got in the mess we’re in today, and some ideas about how to fix it. His intention was to give business owners an idea of some options and choices that exist now. Well, we didn’t really get far into that last part, as so much of the time was taken up with people’s impassioned views on the subject of our health care system. Not surprising in the USA today.

A lot of views were expressed about how people overuse medical care, and doctors over-test and over-prescribe in order to cover their butts against potential liability, how we expect higher standards of care than in the past, how we take too many prescription drugs and don’t emphasize prevention enough. I can get with most of that, as far as it goes. I think health education and healthy lifestyle choices could be much more emphasized. I think the practice of defensive medicine is a real problem. But I don’t think the answer is to turn back the clock and say if you injure your knee you should just live with the limitations for the rest of your life, rather than having rehabilitation available. I don’t think having real effective treatments for conditions that were taken for granted throughout human history is a bad thing. People don’t have to suffer like they did – throughout human history.

It was more than I could do in the short time we were together to really make the case for chronic illness, though I tried. We all need to be responsible for ourselves, and take care of ourselves, and looking to a doctor or a pill to solve everything is not the answer. But many of us do not have the option to go without medical care – we cannot function without it. And the advances in medicine that may be seen as excessive or unnecessary by some are not happening fast enough for us, to help us function.

Many of us with chronic illnesses are living the healthiest lifestyles imaginable. We’ve cut out the unhealthy things that others just think they should cut out. We don’t have a choice because these things make us sick now. One guy said he thought it was crazy that healthy people and sick people should pay the same insurance premiums. This shows the problem with a traditional, for profit insurance risk model – but how can any rational person say that you have to be extremely wealthy to be a sick person? Should I pay twice (or five times) as much for my insurance as you? In other words if I get sick, if I have a genetic predisposition to disease, have an accident, or am just unlucky, I should go broke and end up an the street in order to pay for my care? Or maybe I should just die? A pure for-profit insurance model like this guy was championing, that’s the real death panel.  (Choosing who should live or die based on ability to pay. We have that in this country right now!)

I’m responding to things that I couldn’t respond to at the time without completely diverting the conversation. Unlike some wingnuts in town hall meetings around this country, I’m polite enough not to shout people down. Most of the time.

But what really got me was when we started talking about the Canadian model – interestingly, our presenter was a Canadian, living in the US for the last 15 years. He debunked the myth that people wait years for needed surgery in Canada. The same guy whose views I took issue with above said that in Canada the health care is free but the beer is really expensive. He said, “I’d rather have a cheap six-pack than a heart transplant.” Now listen, he was trying to be funny, but come on. Ask anyone on the street if they’d rather have a beer or a heart transplant, and chances are only those who need heart transplants are going to opt for the second choice. Even if you don’t like beer… The point is, that if you need a heart transplant, you should be able to have one without worrying about losing your life savings, or dying without the care you need. And yeah, go on and tax the unhealthy things to pay for the healthcare. Makes sense to me!

- Megan

Hit in the head image courtesy of Pawel Loj.

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Posted in Advocacy, Current Affairs, Rant | Comments (4)

Move a Muscle, Change a Thought

June 12th, 2009

Move a Muscle, Change a Thought. I first heard that in a self-help program many years ago. It’s easy to stay stuck in a certain way of thinking, to stay down and confused and immobilized when we stay in the same place, looking at the same things. Get up, move, do something different, move a muscle, change a thought. There is now all kinds of scientific evidence to back up this idea, of the benefits of physical activity and exercise. I’m not just talking about working out or even taking a walk, though. Just do something to shift, move, change your perspective, take some action, get something moving.

This is as true for those of us with Migraine disease and chronic illness as it is for anyone else. Maybe more so. When we are in chronic or frequent pain it’s hard to act on this. I don’t deny it. But as hard as it is, it’s very important. It may be that walking to the mailbox is as far as you can go. It may be that sitting up for an hour instead of lying down is a major challenge. Do it, if you possibly can. We need accomplishment in our lives to make our lives feel worthwhile to us. We need goals, even tiny ones. We need to feel we are contributing, even if the extent of the contribution is to wash 3 of the dirty dishes. There will be those times when we cannot do anything but endure our pain, or when attending to our healing is all we should do, but when it is not one of those times, it is time to be doing something.

We also need the shift in perspective. When you stay in one place for a long time, your world can close in. You can’t see your way out of problems. Moving your body changes what your eyes see, it helps your blood flow, it helps you breathe more fully, and it opens up your thinking.

I just completed the set of BREESE relaxation recordings which are available on the products page here on Free my Brain. The final BREESE Breathing recording teaches a breathing and movement technique I use to help get the breath and blood moving and the whole body relaxed. You can use this when you have mild head pain, or in the post-drome phase after a Migraine to start moving again and aiding your recovery.

Another technique taught me long ago is to take a green break. Plants produce the oxygen we need to survive, they also produce negative ions which soothe us. Get outdoors and be with a green growing thing. If you can’t get out, spend a few minutes with a house plant. When all else fails, look out a window at something green, or even look at a picture of trees, fields, the natural world. Get up, leave the house, cross the room, or even roll over and contemplate something green. Let your worries flow out of you into the green growing world. Just as plants use our carbon dioxide, the waste from our breath, to produce oxygen, let the waste of our minds, our worry and anxiety, flow out into the natural world and be transformed.

Life rewards action. There’s another great saying, and I don’t know where I first heard it, but I have found it to be true, for me and for the people I work with. Here in New Jersey we have had several weeks of almost non-stop rain. It is gray, damp and chilly, except when it’s gray, damp and muggy. Although I don’t trigger at every barometric pressure change like some Migraineurs, I did eventually get a Migraine over the past few days. It was very hard to get up and move. But once the active pain phase had passed, and during a break in the clouds, when it was just drizzling instead of down-pouring, I went out for a walk. I walked gently, doing my relaxation breathing in rhythm with my steps. I came back more optimistic, with the fog of post-drome beginning to lift. I played a game with my kids; I began writing this piece.

Do what you can to get in action. Little actions can make a big difference. Roll over, shift your perspective. Move a muscle, change a thought. Let me know how I can help!

- Megan

Walk in the light image courtesy of H. Koppdelaney; Rain shower image courtesy of AlmazUK.

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Posted in Managing, Musings, Tips & Techniques | Comments (0)

Catching Up

June 3rd, 2009

A poem about talking to others about chronic illness.

Catching Up

What’s going on? (pain in my head and struggle every day)
I write and work, children grow and amaze,
I walk the field when I am able and drink in the richness of the world.
Many days my world narrows to this pain in my head, and my struggle:
I must try – help to keep this family afloat, and I haven’t the stamina
or time free from pain
to stay on my feet more than half the day.

Why haven’t I told you?
I could not bear the disappointment in your eyes,
the well-meant advice and suggestions.
This was never who I set out to be.
I did not say I think I will grow up, yes I,
this talented and brilliant child,
I will grow up to be a sick person.
No, this was not my agenda.

Why have I been out of touch?
I could not bear the hope in your voice,
when I have a good day – that now I will be all better,
I could not bear you rushing to me with your cures for the incurable.
I could not bear your pain for me, mirroring my pain for me.
I could not bear my envy of your life.
I have learned lessons costly in the teaching
and too painful for a Christmas letter.

Hope is with me every day. And fourteen years of worsening health,
more Migraines,
I grow older, the future is uncertain.
I have a sensitive system,
I have fought knowing that I have a sensitive system,
and it has cost me.

Now I try acceptance for a change.

What’s new with you?

- Megan Oltman

Writing pen image courtesy of Toshiyuki IMAI.

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Posted in Communicating | Comments (7)

April Headache and Migraine Blog Carnival

April 14th, 2009

The April Headache & Migraine Disease Blog Carnival is posted at Somebody Heal Me.  Diana Lee created the carnival to provide headache patients and people who blog about headaches with opportunities to share on topics of interest and importance to us.

This month’s carnival had no set topic and garnered an interesting collection of posts.  There is a lot of good reading here.  Some of my favorites – James of Headache and Migraine News Blog gives us exciting news of a new upcoming Migraine drug.  Rosalind of Working with Chronic Illness makes some really insightful points about how to avoid and deal with errors at work resulting from your illness. Kelly of Fly with Hope has the inspiring idea of writing herself a letter to remind herself of hope when she’s in pain. And Rena of Dealing with Headaches – well, Rena, you know you always make me laugh, but this month I’ve got to say you win the Ewww award!

I don’t want to slight anyone – every entry is worth a read!  Enjoy.

- Megan

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Posted in 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

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Posted in Communicating, Musings | Comments (2)

Grand Rounds for Women’s Health

January 27th, 2009

Every week there’s a round up of the best medical web writing, called Grand Rounds, and this week it’s being hosted by the indomitable Jenni Prokopi of Chronicbabe.  The theme this week?  “Totally Babelicious: A focus on women’s health care issues.”  As Jenni says, “There’s a ton of health information on the ‘net, but often, medical research and reporting focus more on men—so we thought it was high time the ladies got a little attention in Grand Rounds.”

Leading off is an informative and hilarious post on what to do about a common women’s issue – the lost tampon. There are posts on pregnancy, childbirth, chronic illness, tips from practitioners, advocacy and more. The Migraine contingent are represented by yours truly and my friend MJ of Rhymes with Migraine.

So please visit Chronicbabe for some great reads!

- Megan

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Posted in Medicine, Weblogs | Comments (0)

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.

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Posted in Communicating, Managing | Comments (1)

Resolutions Big & Small – for Better Health

January 4th, 2009

Happy New Year, one and all! I have been hearing much fervent relief at the passing of 2008 and perhaps more hope than usual at the launch of 2009. Between the economic woes of the past year, the death throes of the worst American presidency in recent history, and the ongoing struggles with pain and illness of so many of my compatriots, we are all very much ready for something new. And at this time of year, we express that desire and hope through resolutions.

As a coach, I’ve always done a lot of thinking and talking about resolutions. I have mixed feelings about them. One way of looking at a resolution is that it’s a goal without an action plan. We tend to make a list of the things we know we should be doing, or that we greatly desire to do, that would improve our lives, our world, or the lives of those around us. For most of us, having made the resolution, we hope that good intentions and will-power will carry us through. Without actually taking the time to create a plan, to see what might be in the way of changing from our current actions or habits to the ones we want to develop, to anticipate hurdles and strategize a way around them, good intentions and will-power will get us where they usually get us. Maybe to February 1st. If we’re lucky.

So resolutions are great if you craft them into goals, and goals are only worth more than the paper they’re written on if they are big and inspiring but also grounded in reality, with strategies mapped out to get you from here to there. And that’s what a coach helps you do, craft the goal, make the plan, and then stick to it!

The other difference between a resolution and a goal, is that the resolution is about action we can take, and the goal is about what we hope to accomplish by it. I’ll express a goal right here:

In 2009, to see my Migraine frequency go down to under 3 per month.

This is a pretty audacious goal, from someone who had 6 – 9 Migraines per month in 2008. The other thing that’s audacious about it is that I cannot control my Migraine frequency – directly. I can only influence it. So I need to resolve:

Why am I listing all this out? Because these are the things I can actually do something about! The goal itself, directly, I can do nothing about! If I only focus there, I just get discouraged, or I waste my time in fantasy.  It’s the same for my business goals – I need to make more money, to keep paying the mortgage and send a kid to college next year. If I focus there, all I will do is panic. If I focus on the actions that I can take that will connect me to the right people, get me exposure, eventually bring me work, the goal may be obtainable.

So reach for the stars. Make big goals. Put them in front of you and don’t forget them. But for your resolutions, keep your feet on the ground. Find small concrete steps that you know you can do. And make a plan to do them. If you need some help with that plan, email me from my contact page. Make it a great 2009 – let’s see out the decade in style!

- Megan

Conch shell image courtesy of Joshua Davis, wall jump image courtesy of Alex Roberts.

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Posted in Managing, Tips & Techniques | Comments (2)

Radio Piece on Migraines, Neurological Illness, and More

November 20th, 2008

On Tuesday I had the great good fun to be interviewed by Coach Marla Martindale of A Winning Life with RSD, along with her co-host Chris Tatevosian, author of Life Interrupted – It’s Not All About Me. Marla’s weekly radio show Winning Life Through Pain is on every Tuesday and deals with living well with chronic illness, and other health related topics. We talked about managing life with Migraine, Migraine myths and tips for coping, communicating about our illness, and how to calm down our nervous systems, as well as discovering a lot of similarities in dealing with other neurological illnesses like RSD and MS. Oh and there were a few references to baked bees and general silliness. You can discover that for yourself, if you like. Give a listen.

(Oh, a warning, it’s a big file – 27.4 MB, so you if you’d rather not deal with loading it, go to Winning Life Through Pain to listen.)

- Megan

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Posted in Advocacy, Communicating, Tips & Techniques, Weblogs | Comments (0)

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