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Posts Tagged ‘chronic fatigue syndrome’

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)

Chronically Ill? What Are You Doing for Fun?

September 22nd, 2008

Fun?  Megan, come on, what do you mean fun?  I get up, I take meds, I go to work, I try to make it through the day, I come home in pain and try to do the minimum I can to get by, feeding myself, family, pets, doing laundry, paying the bills, I collapse as soon as I can.

Fun?  Everything I used to do for fun is gone – I can’t… drink, smoke, go out in the sun, exercise, go to rock concerts, go to noisy/smoky bars… fill in the blanks.

Fun?  I can’t afford to have fun.  My money all goes to doctor bills, medications, co-pays, insurance premiums…

Fun?  Look, I can’t have fun when my basic responsibilities aren’t being handled.  I’ll have some fun after I’ve felt well enough to finish the taxes, clean the house, mow the lawn…

Have I covered everything?  Any other objections you can think of?  I want you to know I have lived my life at times inside of every one of those objections.  Who has been my biggest killjoy?  Not Migraine disease, chronic fatigue, sinus infections, nasty bosses, demanding clients or disbelieving relatives, but little old me.  My own biggest Killjoy.

But I am taking a stand for Joy, alive and well.  This is my life.  Now.  Imperfect as it is.  If I wait to
get everything done first and then have fun, two things will happen.  I will never get it all done, and I will never have any fun.

Do I want this on my tombstone:  Got it all done?  By the way, even if I want it, it’s never going to happen.  As fast as I can do something, no, even faster, the more stuff to do gnomes are creating more stuff to do.

And even if I give up on trying to get it all done, I also have to give up that I will have fun when I feel better.  What if I don’t feel better?  Sorry guys, but what if this is as good as it gets?  Don’t stop hoping and working and fighting, but I could die tomorrow.  This is my life.  Now.

So what do you do for fun?

What gets you up in the morning?

What do you look forward to?

Your life is happening now, imperfect as it is.

What restores you, restores your perspective, where is your creativity?

Laugh.  Play.  Laugh some more.

I’m crocheting a granny square scarf.  Kind of silly and retro-60’s but I enjoy it.  I am clearing my front porch little by little preparatory to stripping off the ratty old indoor-outdoor carpeting and painting it. I’m walking in the park every day I feel well enough.  Sharing books to read with my kids & husband.  Taking DVDs out of the library.  Mostly I’m concentrating on finding fun things for when I’m sick or my head hurts, and taking time for fun on the weekends, whether or not we’ve gotten through our house projects agenda.  And making plans with friends and family, not worrying whether we might have to cancel them.  Making them anyway.

– Megan

Tags: chronic fatigue syndrome, chronic illness, creativity, fun, joy, Migraine disease, sinus infection
Posted in Managing | Comments (5)

Managing my Migraines: Recent Success

June 25th, 2008

All my hidden superstition comes out and I hesitate to say this for fear of jinxing myself, but I have only had one very mild Migraine in the past 19 days.  It is too soon to tell if this is a trend or a fluke.   It’s quite a contrast to the last 6 months though, when I’ve had an average of 5 Migraines per month and my Migraines have generally lasted 36 hours.  I promise not to be embarrassed if this trend doesn’t continue.  I believe I am doing a lot of right stuff – just sometimes we need even more right stuff to add to our toolkits.

I have yet to try preventive medications; I missed my long-awaited headache specialist appointment when I was sick with bronchitis.  But I will give you my current regimen, and list the things that I think are making a difference.  Please note that this is my list; the same factors might not work for you.

1. 400 mg of Magnesium (see studies done by USDA linking magnesium deficiency and migraine)
2. 200 mg of B2 (riboflavin)
3. a high potency multi-vitamin
4. 60 mg Armour Thyroid*
5. an iodine supplement*
6. 3000 mg phosphorylated serine per day, 1000 mg each at lunch, dinner and bedtime*
7. 10 mg DHEA*
8. the Wiley Protocol – bio-mimetic hormone replacement therapy
9. not drinking caffeinated beverages more than 2 -3 times per week – and the ones I drink are mild!
10. 30 – 45 minutes aerobic exercise daily
11. sleeping 8 hours per night
12. daily meditation
13. basing my work schedule on the idea that I have about 30 productive hours in me per week, and not trying to do more than that!
14. taking frequent breaks throughout the day and gardening or doing housework
15. napping if I need to
16. switching overhead lights in the house back from CFLs to incandescents
17. banning my son’s stinky cologne from the house
18. Summer – long days, warmth

I have Migraine disease, early stage chronic fatigue syndrome (CFS), low thyroid and, I believe, seasonal affective disorder.  I also have allergies, and frequent, sometimes chronic, sinus infections, and am very prone to catching whatever illnesses are around to catch.  The factors that I marked with an asterix (*) above are not there to prevent Migraine; they are there to balance my hormones, strengthen my adrenal glands, and manage my CFS.  All the research shows that CFS and low thyroid are co-morbid conditions with Migraine – they occur at the same time, without a causal relationship.  I can only speak to my own experience, but when I am fatigued, and I push myself beyond my limits, I often get a Migraine.   Low thyroid also contributes to my fatigue, which contributes to my Migraine frequency.  Unless someone can prove to me otherwise, I will maintain that taking care of my thyroid and CFS also takes care of my Migraines.

I began the Wiley Protocol about a year ago to address menopausal symptoms.  The Wiley Protocol replaces a woman’s hormones with the identical hormones her body makes (rather than the synthetic hormones found in traditional HRT), and doses them in the way that mimics her natural cycle when she is young.  It is not specifically designed to combat Migraine, but for those of us whose Migraines increased in peri-menopause, it makes sense that returning to a younger hormonal state would help!  I found initially that while my Migraine frequency didn’t improve, the severity went way down.  My doctor started me on an adjusted dose of the hormones about 3 weeks ago, with estrogen levels raised slightly in the beginning of my cycle and lowered slightly later on.  Since that’s the same time period where I’ve been having so few Migraines, I can only guess it’s helping.

I am usually healthier in the warm weather months, and sluggish and illness-prone over the Winter.  I feel like I come alive again in the Spring.  Short of moving far south, I think I will have to get a light-box for next Winter to address this.

The CFLs are funny for me.  They are on a list of things that I “just don’t like” – and haven’t liked most of my life (baking in the hot sun, strong men’s colognes, crowded rooms full of noisy people, fluorescent lights).  Lo and behold, these things that I never liked are actually triggers for me.  When I began blogging about CFLs a month or two ago it occurred to me to get them out of my own house and see what happened.  My husband had started replacing incandescents with CFLs in our overhead lights about six months ago.  My Migraine frequency went way up when?  About six months ago!  Coincidence?  We’ve been taking them out again and… fewer Migraines?

A conclusion here?  As you all know who deal with this disease, there are many factors involved.  If you are one of those people who only has to avoid one trigger, or take one herb, or use one particular drug, to eliminate Migraines, then God bless you!  You have my undying jealousy!  If you are one of those complicated cases who have to manage multiple triggers and multiple treatments, I know how tired you are of managing it all.  I just want to hold out some hope – that the detective work is worth doing, and can make a difference.  Keep on trying!

– Megan Oltman
Managing Migraines one day at a time.

Crossed fingers image courtesy of Meisje van de Sliterij.

Tags: chronic fatigue syndrome, magnesium, Migraine treatment, Migraine triggers, the Wiley Protocol, vitamin B2
Posted in Managing, Medicine | Comments (8)

My Migraine Story

May 30th, 2008

What’s your Migraine story?  We all have one (all of us with Migraine disease, anyway).  Having a sensitive nervous system sets us apart from the majority of people around us, and we all go through a process of realizing or coming to terms with that.  With what it means to us and with how it impacts us.  That process  and story have become clearer to me as I have entered the on-line Migraine community, in this curious role of migraine blogger.

I have worked as a coach for many years now, helping people set goals, make choices, and live powerful lives, both in personal and business contexts.  In the course of that work I have had to make many accommodations to my Migraine disease, my chronic fatigue syndrome, and my recurrent sinusitis (to name the major culprits).  I have had the privilege of helping a number of other people with chronic conditions figure out how to structure their lives, businesses and careers so they can live fully despite their illnesses.  The moment of truth for me came when I realized, about 7 months ago, that my chronic illnesses are not just an impediment in my life.  They are an opportunity to share my professional tools and skills, and the wisdom I have accumulated, to help others manage their lives with Migraine.  I was already doing it, but I had one of those moments where perception shifts, and I saw that this could be a major focus for me.  Call it an epiphany, an aha, or a moment of madness, but here I am.

In my own journey it’s not a bad thing to be looking at my life through the lens of Migraine disease.  I am not interested in having that be all that defines me, but it is dangerous to ignore it.  I have questioned a lot
how my life might have been different without this condition.  I approach this question now after nearly a half-century of life.

I’ve had migraines since at least my teens. I don’t remember the first, but at 17 after
surgery at Montefiore Hospital in the Bronx (that’s another story), leaving the hospital we drove past the Montefiore Headache Center and I thought “Wow, someone actually treats headaches? Someday, maybe soon, I’ll have to go there.” So I’m guessing I had migraines before 17.  Certainly, the first few I remember clearly, in my mid-twenties, I was already calling them migraines.  I could distinguish the headaches with nausea, vomiting, and nearly unbearable sensitivity to light and sound, from the regular, run of the mill headaches.

In retrospect, migraines have had a big impact on my life and my choices, even though they didn’t become frequent for me until my early forties. The biggest impact in my earlier years was on my career. I
completed law school and went to work at a big Wall Street firm. Everyone who knew me was surprised by that choice, but for me it was important to prove I could succeed in a high prestige, high pressure
world. I proved it for two years and left. In the meantime I had some doozies – vomiting in the gutter in NYC became a familiar shame in my life. I would have told you at the time that my migraines were triggered by stress.  But in retrospect, those moments of high stress came with sleep disturbances (pulling all-nighters to get a brief finished or prep for court), excess caffeine, and the poor eating that went along with them. I went into the less pressured environment of a legal services office, and migraines became less frequent, until after my first child was born. Then I had the new pressure of juggling baby and child care, parenthood, chronic lack of sleep, with part-time legal work. Oh, and let me tell you about part-time legal
work. Part time in the law is like 80+ hours this week and none for the next 2 weeks, not like “I’ll work Monday, Wednesday and Friday when I have child care!” A set up for stress, exhaustion, a frantic life.  By our mid-thirties we had two kids, a house, a yard, a mortgage, and one of us (me) got sick a lot.

I left the practice of law a decade ago and began doing work that I could structure in a way that worked in my life.  Writing and coaching.  Doing that work while making sure that I slept enough, ate right, used meditation as a regular practice.  I made those career and lifestyle changes just in time to develop anaphylactic allergies to pain-killers; just in time to have a sudden increase in my migraine frequency from a few a year to a few a week.

To tell you the whole story would require a book.  I’ll let you know when I’ve gotten it written.  The main thing I am looking at today is who I am – as a migraineur, yes, and as me, who is much more than just this disease.  I have always thought of myself as tough.  You can laugh if you want.  Yes, I’m rather small and soft, not particularly athletic, and I’m not a mean person (though I can be sarcastic).  There’s a mental toughness, though, a determination to keep going, to build, to create.  And on the other side of that, I have to accept my delicacy.  We are sensitive, we migraineurs.  Sensitive to our environments.  Vulnerable to odd things that don’t bother other people.  I can’t seem to change the fact that I get sick a lot.

For a working symbol, I’m going to use my Iris.  They are profoundly rich and beautiful.  They do bruise and wilt easily.  They need to be fed, watered and cared for.  But they keep coming back, and growing, taking more ground.  They are a connection to the splendor of life.

What’s your Migraine story?

– Megan

Tags: chronic fatigue syndrome, chronic illness, life coaching, lifestyle, Migraine disease
Posted in Medicine, Musings | Comments (2)

Update from Migraine-land

May 5th, 2008

My computer is well again, thank goodness.  And I have just been through a bad migraine patch – 6 of the last 11 days.  For those with Chronic Daily Headache or Chronic Migraine (Migraine 15 days out of the month), that may not sound too bad.  A few of my migraineur friends have lived with the same migraine for 6 weeks or 5 months.  On the other hand, for others who have 1 or 2 migraines a month, or less, that may sound awful.  I used to have 2 a year.  The good old days!

(By the way – do I have Chronic Migraine myself, or is mine still considered episodic?  I have not hit the 15 days a month marker yet, but I seem to be close some months.  We’ll see what Dr. Young has to say at the Jefferson Headache Center when I go in June.)

But life goes on.  I learn more all the time about managing this disease.  I always try to share what I am learning.   I have been thinking a lot about managing Migraine triggers.   Part of my recent bad streak is probably due to having been in a course that activated many triggers for me.  Lack of sleep, florescent lights, lots of noise, having to concentrate way beyond my fatigue point.  It took me about 4
days to recover from 2 days in that course.  It was a price I paid willingly for a useful piece of professional knowledge.  I can’t always avoid triggers.  But I will try not to do weekend courses like that without spending a few days in bed afterwards.

My friend, neurological-chiropractor Dr. Heidi Kaufman introduced me to the concept of neural fatigue.  I
haven’t found a good reference on this yet, but basically the idea is that neurons get tired out and stop functioning as well.  I experience this when I am exposed to a lot of noises at the same time – I lose my ability to sort one sound from another and all I hear is undifferentiated noise.  Parts of the course were like that, as some participants insisted in talking across the instructors.  I believe this is an instance of what Dr. Hayrunnisa Bolay described in her research findings of

a mechanism that leads to problems with discrimination of tones and
lateralization of sound, particularly in a noisy environment, in
patients with migraine.

“Cochlear Dysfunction Apparent in Migraineurs,” April 12, 2008, RM Global Health. (Thanks to Rain Gem for pointing me to this fascinating study.)

Another instance of just how weird this disease is:  for some time now when I am fatigued, I have trouble with spatial perception.  This occurs most often in a car, where I have trouble perceiving how close or far away other objects are.  It feels like everything is moving too fast for my brain to catch up, to quote one of my buddies in a recent discussion on the MMC Forum.  I find myself afraid I am going to fast, or that I am about to hit something when there is actually plenty of room.  In case you’re worrying, I pull over right away if this happens when I’m driving.  It happens most often when my husband is driving, and I flinch and gasp at what appear to me to be near misses, when actually he is leaving sufficient distance, slowing down and stopping quite appropriately.  I am wondering if this is an instance of Alice in Wonderland Syndrome, an unusual sort of migraine aura which affects spatial perception.  I enjoyed this article in the NY Times blog a few months ago, and here’s a new one from Teri Robert: Alice in Wonderland Syndrome – The Basics.  Since Lewis Carroll was a migraineur himself, he may have been describing his own experience when he wrote of Alice’s strange growth and shrinking.   Adventures in Migraine-land.

I may appear to be rambling.  I may, in fact, be rambling.   I’m leading an exploration of migraine triggers right now at WEGO Health.  It’s part of a series of lessons on Migraine Management Coaching.  Please come and visit if you’d like to look more deeply into what may trigger your migraines, and how to manage your triggers!

– Megan

Now the dogwoods are blooming – life is great!

Tags: Alice in Wonderland Syndrome, chronic fatigue syndrome, chronic migraine, cochlear dysfunction, disease management, migraine, migraine aura, neural fatigue
Posted in Managing | Comments (4)

It’s 8 PM and I’m not Exhausted!

April 8th, 2008

Well, it may be a little bitty success but it’s certainly making me happy. I have been so exhausted lately, with many migraines spawned by it. Some nights I’ve been literally shaking by 8 or 9 pm – as if I had just climbed a mountain.  Sleepy doesn’t describe it.  This is deep down muscle achy bone-weary exhausted. Some days I’m like that by 4.  For 3 years I’ve been describing myself as recovered from chronic fatigue.  Lately I haven’t been so sure.

Today I was more energetic in the morning than I’ve been in at least a month. Had a good productive morning of work.  I got sleepy and fatigued after lunch but decided to take a walk instead of a nap. I figured maybe it would help and if it didn’t, I could always take the nap when I got back.  And whaddaya know it worked! I felt really wiped out in the first five minutes of the walk but twenty minutes later I felt awake and energetic! I got to enjoy the pretty spring day in the field!  (No, the dogwood’s not blooming yet.  That’s last year.)

I worked some more this afternoon, and took my son to his drum lesson.  Danny had a meeting to go out to in the evening and I actually made dinner, cleaned up the kitchen, had a nice dinner with the kids, all without collapsing. This is huge. And not one little twinge of head pain, none!

Maybe the latest hormone adjustment my doctor gave me for the chronic fatigue is actually working. Could happen!  He’s had me on phosphorylated serine/ethanolamine for adrenal support.  Sorry I can only find links selling it, not links describing how it works.  As I understand it my cortisol levels were too high in the afternoon, and the supplement helps bring them down to normal.  CDC (Centers for Disease Control) notes a correlation between abnormalities in production and release of cortisol and chronic fatigue.  CDC does not go so far as to say that hormonal supplementation is effective.  But hey, the supplement says it’s for adrenal support.  I guess my adrenals appreciate the support.

– Megan Oltman

I’m lying down now but I may just get crazy and fold the laundry!  Woohoo, we’re living large now!

Tags: chronic fatigue syndrome, cortisol
Posted in Musings | Comments (3)