Some musings during the hygge time of year: Zen and the Art of Being Really Sick

Fibromyalgia is odd in the way it causes fits and starts of energy.  Months of barely functioning and then, suddenly, a newfound ability to be in the world.  The inevitable question is, how much hope do you hold out, or rather, how to do keep yourself from holding out hope when life is simply unpredictable?

To live successfully with a disability of this nature depends on cultivating a Zen mind.  I repeat to myself many times a week, “everything is impermanent.”  This cuts many ways.  Zest for life will come and go.  Strength and ability will wax and wane.  The good times end, but so, inevitably, do the worst of times.

I also cultivate a combination of mushin and zanshin: being present in the world with a non-judgmental mind.  Now, this in no way relates to the way I scroll Facebook or consider politics; I’m just not that Zen.  But regarding the interaction between pain and functionality, I can be aware of my feelings without my thoughts spinning out of control.  “At this moment, I am fatigued,” not, “I am so tired and I’m always tired and I’ll always be tired and I can’t accomplish anything and life is never enjoyable and nothing ever works out.”

I’m not perfect at this.  Many times, with a new pain has come a certainty that I have a new permanent disability that is going to forever affect my life negatively or drastically.  Time and experience help with that, and allow me to notice the experience with an open mind, focused only on the moment.

So, for now, I am studying Spanish, making Christmas cookies and lemon bars, applying for proofreading jobs in hopes of feeling useful for a few hours per week.  And at some point, I’ll simply be in bed for days at a time, listening to books about the periodic table and Japanese history.

And that’s okay.  Because it simply IS.

I Dropped out of Society for a Year because of an Off-hand Comment

Within a short time of my diagnosis with chronic illness, I applied for and received long-term disability and quit my job making six figures as an attorney at a major law firm, a job at which I’d only worked for three years, to pursue new avenues of treatment but mostly just to try to survive; feeding and grooming myself was an everyday battle.

 

I struggled with my feelings of uselessness and failure and because I had spent my whole life chasing accomplishments, and my career had been so all-consuming, I was pretty isolated.  I had made a new group of friends but I was uncertain and awkward.  What did I have to offer?  What were people thinking?

 

And that brings us to that certain category of people all sufferers from invisible illnesses know: those who will try to make you feel like you don’t matter.  One day several years into my illness I saw a post by an acquaintance which basically read, “If you are physically capable of getting a coffee at McDonalds, you can at least work part time at a data entry job.”  Now, a normal person on a normal day would merely find this post puzzling.  Because just on the face of it, a moment of coffee drinking versus sitting for 5 hours upright at a desk typing seem like very different skills and efforts.

 

But I thought I knew exactly what those words meant.  Because I was worn down from fighting insurance companies and social security and my internal demons, because I was going through a particularly bad period where my illness was enraged and getting worse, because everything familiar to me was changing, it felt like I was fighting everyone, and that post actually meant, “Everyone sees you and judges you.  We think you are weak.  We don’t believe in your pain.  We don’t care if you suffer, we think you are worthless.  You are a fake.”  Upon reading the last word of the post I burst into long-stifled sobs, deleted my Facebook account, decided I hated everyone, and went to bed.

 

Society is a bitch.  Worse are your self-inflicted torments.

 

I had only found my circle of friends a year ago, after many years of feeling I fit in nowhere, and now I had to return to navigating my life without anyone but my partner.  My illness already controlled my external life.  I was not working, could barely make my doctor appointments, could not eat at restaurants or see movies or grocery shop or be a part of the world in any real way.  Friendship can keep us connected so that we don’t lose our bearings altogether.

 

Life was weird.  Whether because of the fibromyalgia or the medications, my ability to sleep was erratic.  For the eight hours my partner slept, I was especially alone in the world, wandering the house or curled in a tiny ball trying to keep the pain at bay by moving as little as possible.  Despite the criticisms about the effect of social media on human interaction, I find that if you’re careful who you friend, what happens on Facebook can be meaningful, if only because we are letting people in and following each other’s triumphs and follies.  I had grown used to seeing fellow insomniacs reaching out to the world, chatting a bit; I enjoyed writing even silly posts that my friends could wake up and laugh about.  Facebook can be a line connecting the housebound to the universe outside herself.    I was a little untethered at night now.  My thoughts echoed off each other and settled into unseen places.  It was hard to tell if they were real.  Sometimes the solitude made them vague and I became silent inside. Sometimes it made them too real.  There was no outlet for them, they grew and grew in proportion until my mind cried out. 

 

It took me an entire year to recover from that incident and realize that upon seeing the nasty post I could have reached out to a dozen friends who would have tried to understand, who believed in me even if they couldn’t quite relate to the pain and fatigue of fibromyalgia.  But to do that, I had to forgive myself for being ill, and cease buying into our bizarre Protestant work ethic that connects labor and success with human value.  I had to examine my grief.  Some of it was important, certainly I had lost a lot of dreams: traveling extensively, having the kind of financial security I had hoped for, but most of all, excelling.  In that year I had to internalize something new, something that was very difficult to accept: I am valuable because I exist in the world and because I’m capable of love.  It’s not a complicated thesis, but in offhand comments of others, in the platforms of politicians, in the themes of movies and television, I was constantly reminded that it’s not society’s thesis.  Insomuch as this is true, society is wrong. Human beings are important for their own sake. And the narrow-minded judgement of others hurts less when we aren’t buying into their story. 

Now I allow myself a McDonald’s cup of coffee (maybe even Starbucks!), and many good friends, to accompany me on this painful journey.  My friends forgave my absence and now, years later, are my family.  Simply knowing that I’m not alone nourishes me in the darkest of nights.

Daily Harvest Product Review: Soups and Smoothie Delivery for Quick, Plant-Based Food

 

In my worst flare-up, I gained 20 pounds.  Part of this is the lack of activity, but a large part of it is the food I was eating.  There were many aspects to that, certainly comforting myself with food, and the cravings brought on by medication and inactivity.  The biggest problem is one we all know well: grocery shopping can take a week’s worth of energy.  The standard advice for people who don’t have time to cook is to go to a big warehouse store, separate out the food, spend a day cooking and freeze the food.  Many of us have done this at one time or another, but let’s face it, it’s pretty infeasible most of the time.  Cooking ONE meal is exhausting, a day of cooking is generally out.

But unless we have a supportive partner, that leaves us vulnerable to fast food and take out, while our doctors are telling us how important it is to support ourselves nutritionally.

More options exist now for prepared food delivery, grocery delivery, and meal prep kits, as well as more meal replacements.

I would like more plant-based foods into my diets, so I am trying various services that might help me do this even when exhausted.  Daily Harvest provides vegan smoothies, and now soups.

The smoothies come packed with dry ice.  A word of warning:  even dry ice doesn’t last that long in the 110 degree Southern heat.  I once ordered ice cream online in July.  Big mistake! I would recommend that someone be home to freeze the food so it doesn’t defrost completely.

They arrive with tidy packaging in individual cups.  These are not entirely ready-made food, you must add liquid, and the smoothies require a quick blend.

You might choose to have different kinds of broth available for the soups, as well as coconut milk, and juices and coconut water for the smoothies.  As needing to keep these items around defeats the purpose for a severely disabled person, I tried preparing everything with water.

 Look how fresh and good these veggies look!  Look at them!

Look how fresh and good these veggies look!  Look at them!

Daily Harvest has three choices for soup, Black Garlic Zucchini, Carrot + Coconut, and Mushroom +Miso.

To prepare the soup, you add water or broth and cook it either in a cup or in a pan on a stove.  I compromised and used a bowl so that the soup wouldn’t slop over when I tried to eat it.  Five minutes and the microwave and I had this lovely carroty, curry, coconut treat.  I could have added coconut milk, which would make a very rich broth but might cool off the spice a little.

The Black Garlic Zucchini was amazing.  What I’m liking about these soups is that they are far better than anything I could prepare, which makes me feel less guilty about the expense.

 

Like many fibromyalgia sufferers I have IBS and cannot tolerate mushroom, so I let my SO try that one out.  He agreed that it’s restaurant quality and that it would be better prepared with broth.

I was slightly limited in ordering smoothies  by my tree nut allergy, but what’s great is the transparency of the ingredients.

 Daily Harvest's ingredients are easy to find, no surprises.

Daily Harvest's ingredients are easy to find, no surprises.

There were still numerous choices.

Watermelon was refreshing but a little bland as watermelon can be.  A little pineapple juice would be delicious.

Strawberry was delicious.  Fruit juice would sweeten it but add calories, it was flavorful and fresh.  You don’t notice the oats.

Cherry Acai was by far the most flavorful and what I would choose, especially since it at least has some greens to justify the calories.

The usefulness of the soups and smoothies is somewhat dependent upon your appetite.  I have a lumberjack’s appetite in general, and especially after my history of bingeing on fast food, so I am still becoming accustomed to plant-based food.  I was hungry shortly after lunch, but would be an excellent 3pm snack instead of chips or cookies, or a hamburger depending on my orneyiness!

A weekly subscription makes each cup $7.99.  Smoothie cups have two servings.  Longer subscriptions can get the price down to $6.99.  The company promises exciting additions to come, so stay tuned.

What have you tried to get better foods in you?

Dear Doctor: A Plea for Better Health Care

I was diagnosed with fibromyalgia well over a decade ago. The doctor listened to my symptoms, performed the trigger point test, and declared that I had fibromyalgia.  I remember all of that.  I remember my doctor wanting to work hard with me and try everything in his arsenal, and I felt reassured by that.

What I don’t remember was a depth of discussion of fibromyalgia.  Of course, we don’t know exactly the cause and people’s symptoms differ, but even those things are important to know.

Some of this is of course doctor and era specific.  A recent doctor I consulted for a second opinion at least had a working theory of early trauma that causes the body to develop with an overblown reaction to pain stimulus, and the cluster of conditions known to be associated with this phenomenon.

Here is a brief discussion of what I think patients deserve to know or have.

What to expect:  Fibromyalgia is stressful enough without painful surprises.  Fibro sufferers know there are numerous symptoms other than mere “pain” and “fatigue.”  I spent countless hours at specialists uselessly trying to figure out things that I’ve since concluded are merely part of the universe of symptoms that I originally didn’t know existed, from seemingly minor but excruciating symptoms like phantom itching, that deep creepy crawly itching that doesn’t respond to scratching, to more systemic problems like abdominal pain.

How to cope with the pain:  As discussed below, there are some proven ways of addressing pain outside of medication, which is important since medications are so rarely effective in treating fibromyalgia pain.  How can doctors discuss treating fibromyalgia without this?  I was completely unaware, although one figures these things out the hard way, of spoon theory, and of pacing, important ways of living fully despite symptoms.

A network of helpers: Rheumatologists shouldn’t work alone.  Patients need a network of care.  Doctors can provide references to:

  • occupational therapist: An initial appointment can assess where patients are and provide them with information about what kind of help is available in the future.  Occupational therapists are trained to help adapt environments and tasks to the person, preventing and treating injury and pain.  These helpers can help you perform tasks with adaptive technology or better techniques.

 

  • pain management and grief psychologists: Techniques like deep breathing and music therapy are proven to have benefits when dealing with pain.  Bringing in mental health professionals ensures that multiple treatments are explored.  Further, it is unfortunate that many doctors are not comfortable with nor aware of the complex emotions patients may endure with chronic illnesses.  In that case, it is important to, from the beginning, provide patients with a list of psychologists who do understand and can work with the aspects of loss the patient will face, relationship and family issues, and work related problems.  I say psychologist because I am reluctant to say LPCs are trained adequately to work on this specific issue.  Doctors should inquire into the expertise of anyone they recommend.

A pamphlet that reinforces what you’ve learned: Fibrofog, another symptom of which I was not informed, is an extremely common cognitive dysfunction making things like retaining information challenging.  Beyond that, anyone receiving a life-changing diagnosis after so long looking is bound to be unfocused, taking in more information than can be processed in the moment.

In short, the doctor should expect the patient to not retain for the rest of their lives what they are learning in one 15 minute visit.

Visits should reinforce important facts about the illness and its treatment:  Smart doctors often don’t appear so to patients, because they forget that the patient can’t read the doctor’s mind.  The doctor may be working from a solid theory, understand the connections, know what’s coming next, and know what the patient should expect.  If none of that is communicated, only a terse prescription, the patient is left without a lot of valuable information, and probably a lot of fear, disappointment, and confusion.  Appointments are a good time to put assumptions aside and briefly revisit what the doctor thinks the patient already knows.  After all, this is a lifelong diagnosis.  One omission at the beginning can have huge consequences for the rest of the patient’s life.

Conclusion

Surely doctors are tired of self-diagnosing Googlephiles.  In that case, stop driving us to google and share your expertise.  The fibromyalgia community shouldn’t have to doctor ourselves.  In the age of insurance, maybe good care is too much to ask.  But that’s a blog for another day.

Chronic Illness and Winter Blues: Find your 'Hygge'

 

Like a lot of people with fibromyalgia, I have always detested winter. Not only is everything dead or dying, grey, bare, overcast and dark, the cold often exacerbates my fatigue and pain, and increases my chances of experiencing one of those odd cluster of symptoms like painful phantom itching. Winter clothes hurt my skin and I feel even less motivated to go out.

This year has been a bit different. Granted part of it is that I’ve pulled out of the multi-year flare-up or post-viral fatigue that kept me bedridden most of the time. But I think some of it can be attributed to hygge.

I began hearing about hygge a few years ago, first from my SO, a near magical sentiment that began in Scandinavian countries.  A Danish word, hygge refers to an attitude quite different from mine about the cold, dark months.  The word translates loosely to “cozy,” and encapsulates a love of nature, the cold, friends and family, and all things winter.

 

 Finding your hygge spirit can be as simple as a warm fire, a cup of coffee, and a treat.

Finding your hygge spirit can be as simple as a warm fire, a cup of coffee, and a treat.

Here is some of what I have tried in order to achieve hygge.

  1. Enjoy friends and family!  Nothing has kept me positive like surrounding myself with laughter.  When I am physically able, I have spent more time at casual events, attending a new pub or bar with my friends and trying new cocktails.
  2. Hot drinks!  For my everyday strong hot coffee needs, I have a Nespresso Vertuoline Espresso and Coffee Maker , which I mostly use to make good coffee in the winter at the odd times of day I want it (decaf is my friend) without smelling up the whole sleeping house. This is my favorite hot chocolate.  It’s made with real milk, which makes a big difference to the “drinking chocolate” flavor, but it’s also not as easy as just throwing a packet and some water in.  Lately I’ve had the energy to get out and have enjoyed finding coffeehouses to hang out with as long as my back can take being up.  Bonus if the coffeehouse has a fireplace, that’s two hygge in one, three if your loved ones are there!

Another hot drink I enjoyed making recently was Hot Buttered Rum.  There’s tons of recipes on the web; I used one from foodnetwork.com.  I had always wanted to try it, since I was a little girl and it showed up in the mysteries I would read constantly.  It’s very very very sweet, but it’s also buttery goodness; the spices are delicious and make the drink feel special.  I might consider making it again with less brown sugar.

Along with hot drinks, board games and card games like Mille Borne are very hygge, but my SO isn’t crazy about participating, so often it’s movies and television.

3. Electric Blankets!  I find the cold most enjoyable when I’m avoiding it!  I can’t find an electric blanket that isn’t either lumpy or attracts dog hair like mad, but I make do.  With a slightly chilly nose and warm and toasty toes I feel like I’m not fighting the cold, but living together with it.

4. Hot Baths!  This depends on your tolerance for heat, as many with fibromyalgia are heat intolerant.  This is not the case with me.  While you will not single-handedly combat severe fatigue with a hot bath I still recommend my strategy: I partake several times a day (moving from bath tub to sunshine in the summer like a pasty sea lion).    Make the baths special: keep candles (so hygge!) next to the bathtub.  I have to be a little careful about chemical sensitivity but depending on your tolerance you may be able to use natural oils, or the fun Lush bath bombs.  If your tub is big enough, why not invite a friend?

5.  Hot, cozy food!  You know this one: what’s better than comfort food in the cold weather?  Chili (the smell of cold and chili spices takes me back to my childhood), your favorite hot soups and stews…I find that dishes with hot tomato in them are very hygge.  I’ll post some of my favorites soon, but here’s my “I feel like crap, it’s cold, and I have to eat” recipe: Put a whole chicken in a pressure cooker with 2 cups of water and an entire bottle of Herdez salsa.  Cook for 25 minutes on natural release.  You can even cook from frozen if you add some time.  Chicken salsa soup!  If you eat leftovers, much of the moisture will absorb so you may need to add chicken broth or more salsa.  My Instant Pot has come to save my life.

6.  Writing!  Okay this might be a more controversial one, but writing seems so hygge to me!  Because of the stress on my neck, back, and shoulders, of sitting at a desk or table, I write in my recliner, feet up, under a soft blanket, with my animals and SO by me, a cup of coffee or tea on the adjacent table.  The most hygge is a fresh new notebook with just the right paper and a good pen.

So far I’ve had a greater enjoyment of the season, which is great!  No one wants to feel that six months of the year are lost to SAD.  Most things I consider hygge are soothing to my fibromyalgia, too.  What do YOU do that leads to cozy enjoyment during the fall and winter?

Chronic Illness and the Self-Worth Conundrum

I have fibromyalgia.  Fibromyalgia is thought to affect around 20 million people globally.   Because the symptoms can be similar to other disorders, often a sufferer has been through a multitude of testing, seen a multitude of doctors, had hopes raised and dashed a multitude of times. Diagnosis may follow years of seemingly inexplicable and incapacitating symptoms.  You may experience the complex mix of relief at being told there’s a name for what you’re enduring, and the disappointment that there is no cure or consistently effective treatment.

In other words, you’re in shock, you’re scared, and not a fun horror-movie night scared.  You don’t know what to expect next.

That’s where I was well over a decade ago.  My initial disclaimers are thus: Fibromyalgia is a very personal disease.  While the cluster of symptoms is the same for every sufferer, the particular symptoms that affect you most and how they will affect you will differ.  Some people will need to stop working at some point, while others are able to continue in their careers with accommodations.  Looking to other people to measure your own symptoms will only lead to fear and frustration.  Look to the lessons and not the particulars of anyone’s story.

 

The Emotions of Severe Chronic Illness

In my case, it was obvious early on that my life was going to change drastically. Pain was slowly preventing me from sitting at a desk, concentrating, even sometimes driving.  But worse was the massive, crippling fatigue that took me to bed (and not in a good way).  I cycled through the various available treatments in a short period; most were ineffective for my symptoms, while others triggered Dante-inspired stomach problems that only added to my impressive woes.  Depression is often a part of the cluster of FMS symptoms; it took me a while to realize that depression was also grief.  I had worked my entire life, sacrificing the experiences normally accompanying high school and college, to secure a place at the top.  What was I without my hard-won, soul-crushing career as a lawyer?  My life had been about accomplishment, and I didn’t know how to separate that from my very value as a human being.

It is natural to find yourself grieving for the life you had, and experiencing that grief may be important toward healing.   But so is relearning what constitutes a valuable person.  Are you telling yourself that if you aren’t balancing 20 activities, if you’re not at the top of your career, if you’re not chauffeuring your children to every possible activity, that you’re not a valuable person?  Stop it.  This is good advice for many alienated members of society.   But it is especially important for a chronic illness sufferer.

In the United States in particular, that good ol’ Protestant work ethic (and doses of Catholic guilt?) has served even to this day to connect personal value with achievement.  We compete for the fewest hours slept, the most stressful activities, the most neglected health.  Stopping is laziness, and laziness is a worse sin that putting ketchup on your scrambled eggs.

Maybe you recognize my story.  You may feel shamed and may carry internalized shame about slowing down to a pace that is healthy for you.  Even as you try to focus on the positive, you hear or imagine you hear the voices of your bosses (with their own broken marriage and lousy relationship with their kids to show for their career obsession), your neighbors, strangers.  In time I hope you will learn that your most important role is to be good at your new job: to care for yourself.

My life is very different now.  During good periods of time (times when I’m not fighting chemical depression), even an unusually perky hour, I seize life. I channel my inner warrior-princess. I try to enjoy everything outside of my pain.  I try to live with gratitude.  For warm baths, hot chocolate, and fires in the winter.  For the comfort and affection of my pets, even when they think swarming or tackling me is an appropriate treatment for what ails me.  For the rare meal out, for another night of not moving in front of the television, for the strength to do the dishes.  There’s no doubt I will often falter, but now that I recognize that I am a whole person, many happinesses are possible.