10 Tips For Lifestyle Management With A Chronic Illness

lifestyle maintenance with a chronic illness

Living with a chronic illness is a fact of life for millions of people in the United States.  Between never ending symptoms, doctors’ visits, and medications, juggling a chronic illness along with everything else in life takes patience and practice.  Today we’re sharing a great article that Ghergich & Co. produced in conjunction with Health Perch about lifestyle management with a chronic illness.

The article offers 10 tips which are easy to follow on managing your life with a long term illness.  Each tip entails a way in which you can take control over your care, your body, your food, and your emotional well being.  To read the whole article go here!

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Do you have any tips to add for helping out lifestyle management with a chronic illness?

Release to Replant, Mindful Living

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My husband and I are preparing for a(nother) move.  We are moving across a few states and downsizing from a house in a suburban area to a two bedroom apartment in an urban environment.  Over the years we have collected a lot of extra stuff.  From old clothes to extra couches and a second set of plates, there is so much we have stockpiled and stored that we don’t need, can’t fit in our new home, and really, that others could use much better than we.  So, we are beginning to let go of these items – going through the drawers, boxes, shelves, and closets to release the extra that we’ve accumulated.  These clothes might remind us of life in another climate, the couches of a friend who gave them to us, but in reality the extra stuff is just weighing us down.

(And, a few years ago we both led a trip of students to New Orleans to help clean out a home of three elderly family members who had collected, hoarded, to what felt like an unlivable standard.  So we both have distinct images of where we do NOT want to go!)

Last week we started with going through our clothes – trying things on, telling stories about this or that t-shirt we acquired… and putting things in a pile to donate.  We are clearing the way.  Because there just isn’t room for anything new when we are completely full.  The physical mirrors the spiritual in our lives.  When my closet is full of things I use to create my image, maybe I don’t have room to create something new, to be something new.  And I even find that I have a harder time deciding what to wear!!!  When my pantry is full of old food and all these sauces that are just SITTING there, maybe I have less energy to try a new cuisine or make a fresh meal or start a new way of eating (because no one likes to waste food… but how can I stop collecting too much?).  When my schedule is full of activities, hobbies, chores, work, plans… I don’t have time to rest and restore my soul.  And I certainly don’t have the space in my day or my heart to be ready to be surprised by things that may come up to bring me joy.  No time for that!

And moving, for me, always resonates with the image of replanting.  I have a lot of houseplants and they mostly have names and stories of their origins.  I have some aloe that I potted at a friend’s house when she rescued a bunch of little ones from a gnarly overgrown garden.  I have a tall palm-like guy that we inherited at our first home (he had been left behind) and we named him Marshall after the street we lived on.  I have a little ferny friend that reminds me of friends from Michigan where I split him up and shared pieces of him with them.  I am connected to my plants in my home and I have had them long enough to need to repot them.  When I pull my plant from its tiny old home, her roots are usually wrapped around the whole shape of the soil, overgrown and searching for more space.  I gently loosen them, preparing them for the space that is coming.  The new “home” is prepared with extra soil and I cozy the new roots into the pot.  After setting the plant in securely, I add a lot of water to invite the roots to spread out and make themselves at home.  For a little while, the plant doesn’t look as perky.  She feels a little uncertain without her old way of being.  With a little time though, and some growing, she begins to expand beyond what she was.  She can create new stems, leaves, and roots because she has the new space.

This image reminds me of the need to release my grip on my current way of being – it could be my roots of my friends and routines in my current home, my extra stuff, my plans, etc.  And when I make space for something new, even if the process feels uncertain, if my leaves aren’t quite as perky in the process (do I really have to give away that Avril Lavigne concert shirt!? ha!), I can trust that the space I create physically allows my soul and life to take on some new growing.  A new direction maybe, or a new capacity… who knows!  I will never find out if I’m not willing to do the work of cleaning things out and trusting in the less-than-perky process of expansion.

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Ideas for Living This

  • What do you want to clear out to make room for the new?  Your schedule?  Your closet?  Your pantry?  Write it down or tell someone.  Use a journal to chart what you do and what happens with the extra space in your world.  Then, share it with us!
  • Get your hands dirty!  Find a plant that needs a new home (or a bulb/seeds that you want to put in the ground, etc.).  As you are planting or replanting it, meditate on the process of making space (digging in the dirt or loosening the roots), adjusting in the new home (watering, the days of getting settled again, or the winter of waiting for the bulb!), and the process of new growth that will arrive in its own time.  Afterwards, as you wash your hands, trust that there isn’t anything left for you to DO in the process.  Your role is to watch and learn, wait and experience.

How do you make space for replanting and mindful living as a young adult cancer or long term illness patient, survivor, or caregiver?

Tree of Self Inquiry

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I practice yoga and do a lot of the same poses over and over.  I spend time in them and get to know them.  As forms and shapes, as patterns and combinations.  Some days are boring and I struggle to get on my mat.  Other days I just lose track of time and enjoy the exploration of body and mind.  Like any commitment in our lives (family relationships, chores, studying, work, etc.), my yoga practice has its ups and its downs in the daily perspective.  Over the long haul though, I get to learn and grow so much by being persistent.

Each day, as I settle into each asan (pose), I get some time and space to get to know myself.  What kind of voice speaks to me when I can’t reach my forehead to my shins in a forward fold?  Is there a loud inner critic or a compassionate encourager?  And how does that seep out into the rest of my life and roles?  Who am I when I am still in an asan long enough to feel really challenged?  Am I able to breathe big and calm or do I get frustrated?  Do I aim criticism out around me to take my attention away from myself?  Can I really be with myself without judgment, no matter the ‘outcome’ I’m experiencing?  Can I keep my focus on my breath, my thoughts, and my body in the present instead of daydreaming of some unreal future or replaying some non-existent past?

This journey within offers me a big picture benefit – a pearl of infinite value.  As I know myself, I can love myself.  As I experience loving myself, I can extend that grace, compassion, and loving kindness to others.  As I get in tune with the value of my soul, I can recognize and celebrate the value of the other souls around me.  As I root into who I am (without all the stories I create about who I should be or what I’m not enough of), I can grow tall like the trunk of a tree.  My branches extend outward, strong enough to provide a home and shelter to those with need, shade to offer rest to the weary nearby.

Practice Vrikstasan, Tree Pose, this week and notice who you are.  What do you tell yourself when you wobble or fall?  How can you practice encouragement and optimism?  When you extend your arms, can you think about all the ways your arms physically offer support and love to those around you?  What do you carry for others?  How many people do you hug, high five, or touch with these hands and arms?  May this practice, and all your daily commitments, be practices that bring you deeper into the you that you long to always be.

Yoga Tree Pose

Stand firmly with both feet equally sharing your weight and your weight equal between the fronts, backs, and sides of your feet.  Slowly shift your weight into your right leg.  Bend your left knee slightly and turn your knee out to the side.  Lift your left heel up to the side of your right leg and balance here.  Take a few deep breaths and notice how you feel.  Are you comfortable in this position?  Are you frustrated with your dancing ankles?  Either is okay.

If you want to play with moving your left foot up the inside of your right leg, place your whole foot on your inner calf or inner thigh.  Keep your foot off your knee!  To balance, press your right foot down deep and keep your leg muscles strong.  Press your left foot against your right leg and your leg into your foot.  And, you can do this pose next to a wall or chair to help you with balance, too!

Bring your hands together in front of your heart in Anjali Mudra.  Keep breathing.  When you are ready, lift your arms up into the air as your tree branches.  Imagine all the ways your arms support others.  Recognize all the ways your arms support you – hands to connect to others in person or through typing on the computer, arms to hug those your love (or your cozy pillows or furry friends).  Breathe deep.  Bring your hands down and release your foot.  Stand tall again.  After a minute, give your best effort to the other side!

How Can You Help Someone With A Serious Or Chronic Illness?

If you have a friend or family member with a serious illness, you may want to help them out, but be at a loss for the best way.  I can’t speak for everyone dealing with health problems, but these are the things people have done for me that have helped me most, and made me feel loved and encouraged.

Asking for help is hard, but accepting help is much easier.  So instead of saying “Let me know if you need anything.” I recommend making a specific offer.

Last spring was especially difficult for me, so when a friend offered to cook dinner, I was incredibly grateful, and that feeling was compounded when I saw how much effort she put into it.  She asked for a list of my food restrictions and preferences, and put together an amazing meal – main course, side dishes, and dessert.  And she made lots of everything, so I had leftovers to enjoy as well.  Trying to cook a healthy meal while dealing with fatigue is a big challenge (there’s a strong temptation to have a bowl of cereal and call it a day), so having that burden lifted for a few days was a wonderful gift.  Not a cook?  Consider bringing by take-out or a restaurant gift card.

Shopping for groceries is also intimidating when just getting through the day seems impossible.  I have friends who call to ask if they can pick up anything for me when they go to the grocery store or the drug store.  Knowing that a dozen eggs and some apples, or some much-needed tissues, are going to appear at my doorstep can be a remarkable relief on some days.

If a trip to the grocery store seems daunting, imagine how shoveling snow looks!  During one of the big snows last winter, my boyfriend was out of town.  I was on my own as far as shoveling the driveway went, until a neighbor came over with his snowblower, and cleared my driveway and sidewalk in just a few minutes, without even asking.  I almost cried.  Mowing grass or raking leaves will inspire the same deep gratitude (as will indoor chores like cleaning and doing laundry).

Some chores can be put off for a while – cleaning the bathroom, vacuuming the living room, doing the dishes.  But dogs have to go out a few times a day, every day.  If your friend has dogs, offer to walk them – not only will your friend be thankful, the dogs will be, too.

While I don’t have children, I know from my experiences as a babysitter and an aunt how tiring it can be to take care of them.  Taking on childcare tasks can give your friend a much-needed rest, and their children some time to be normal kids, away from the ever-present atmosphere of illness.  My friends with kids recommend a trip outside the house – to a park, a museum, a movie.  And interactive gifts for the children, to help keep them occupied at home, are also high on the list; consider bringing over art supplies or building toys.

The above are all practical suggestions, but sometimes a social visit can be equally heartening.  A serious or chronic illness is very isolating – people with them often have scaled back their social lives and their work lives, and it can get lonely.  So go for a visit.  Talk if your friend needs to be distracted, listen if they need to vent.  If you’re not nearby, you can call, email, or write.  Just knowing that I’m in someone’s thoughts makes me feel less lonely.

Have suggestions for other ways to help?  Leave them in the comments!

More Things To Do With All This Time

If you read my last post, you might think I have an “all work and no play” attitude, even when I’m sick.  But that’s not the case – I spend plenty of time on non-intellectual pursuits as well!  I especially love movies, TV series, radio series, and podcasts.  They keep my mind occupied without overtaxing it, which is perfect for when I’m feeling bad enough to stay in bed, but not quite bad enough to sleep (or try to).

One-off movies and programs are great, and I have enjoyed many, but I especially like series, so I can be engaged in the same story over a long period of time.  Here are some of my favorites.

The Hitchhiker’s Guide to the Galaxy, seasons one and two (radio program).  Classic absurdist science fiction comedy.  There have been a few film and TV versions of HHGTTG, but I don’t think they compare to the brilliance of the original radio program.  I listen to this every few years, and it always cracks me up.  Seasons three, four, and five were produced after Douglas Adams’s death; I haven’t heard them yet, but they’re on my list.

Firefly (TV series) and Serenity (movie sequel to the series).  This show has a hug cult following, and it’s not hard to see why – the television series is imaginative, strongly character-driven, well-written, and well-acted.   It only ran for one season, with a movie following a few years later.  I suggest giving this a try even if you don’t like science fiction; it’s made a lot of converts.

Indiana Jones (movies).  I love the slightly campy side to these movies, and the subtle nods to adventure films of the 1930s and 1940s.  There’s nothing especially deep in any of the films, but there is a great deal of charm, and they stand up well to multiple viewings.

Pride and Prejudice (BBC miniseries).  I know it is a bit of a cliche for an American woman to love this series, but I don’t care.  It gets everything right – the humor in Jane Austen’s most famous book, the romance, and the social commentary.  The casting, acting, and dialogue are all stellar.  As an aside, this is an especially wonderful series to watch with friends.

Sherlock (BBC series).  Another great BBC production, Sherlock has a marvelous premise: that Sir Arthur Conan Doyle’s famous detective, Sherlock Holmes, is living and solving extraordinary cases in modern-day London.  It’s very clever, and absolutely intriguing – the kind of show you have to talk about after seeing.  Each episode is about ninety minutes long, as long as a shorter movie, so there’s enough time with each one to get completely sucked in.

Do you have any favorite series that have helped you through tough times?  Share them in the comments!

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What To Do With All This Time?

When I stopped working because of my migraines, I was having five to seven every week.  My headaches were pretty severe, and even when I didn’t have one I still felt poorly from the side effects of my medicines (and no doubt from stress as well).  I spent as much time as I could resting.  Having migraines was a full-time job, and I worked plenty of overtime.

These days my migraines have improved on all all fronts.  I have fewer (generally three to five per week), they are less severe, and in between headaches I often feel pretty good.  I spend less time sleeping (although still more than the average person, I’m sure) and I have more time to do things.  Of course this is all excellent – I have no desire to go back to daily migraines and complete debilitation.  But it means that while I am not well enough to go back to work (and the unpredictably of my illness certainly contributes to that) I am also frustrated sitting at home with little to do.   Adorable cat videos can only go so far, so here are my favorite internet resources for fun, productive, and interesting time-fillers.

  • Project Gutenberg – An online collection of ebooks, all in the public domain, over 46,000 of them.  You can read them online, or download them onto your computer or an ereader.  They also offer audiobooks (some through a partnership with Librivox), and have lots of at-home volunteer opportunities, including proofreading and promoting the site.
  • Librivox – A great companion to Project Gutenberg, this is an online repository of free, public domain literary works in audiobook form.  They are all recorded and contributed by volunteers, so the quality can vary, but overall I love this site, and I’ve listened to so many good books.  I’ve never recorded a book for them, but it is on my to-do list!
  • TED Talks – TED talks are recorded talks from TED conferences, and cover all sorts of subjects – design, sociology, politics, science, education, policy, technological innovation, history, business, medicine (including cancer), etc.  They are all accessible to a general audience (you won’t need a PhD to understand them) and are almost invariably extremely interesting.  I like using TED Talks as a way to stay engaged on a deeper level with all sorts of current issues and developments.  I’m not out having discussions with colleagues about the latest advances in biotechnology, but this is a good alternative.  One of my personal favorites is Jane McGonigal’s talk on her game SuperBetter.
  • MOOCs – a MOOC is a “massive open online course”, basically, an online class that is provided for free and is available to unlimited numbers of students.  Many colleges and universities offer MOOCs, either through their own systems or in conjunction with MOOC platforms like Coursera, Udacity, and edX.  While you won’t get college credit for the MOOCs you take, you’ll still gain the knowledge.  I’m taking courses to improve and expand my technical skill set so that when I go back to work I’ll have moved forward, instead of fallen behind.  I also take them for fun.  If anyone is interested in learning how to build Android apps, sign up for this course and we can learn together (with over 17,000 other students, too)!
  • Duolingo – this is free online language instruction based on crowd-sourced information.  I use this to keep my French sharp, but it is also great for learning languages you’ve never studied before.  Lessons are short and quick, so you can progress while putting in just a few minutes at a time.

These resources help me stay busy and productive despite my migraines, and I feel good knowing that my time isn’t wasted.  Figuring out what to do when sick isn’t easy!  Do you have other online activities that keep you occupied when your illness keeps you housebound?  Let us know in the comments!

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Favorite products, gluten-free edition

Going gluten-free means cutting a lot of foods out of my diet (goodbye, croissants!), but there are some things I’d rather not give up unless I have to.  So while wheat bread is definitely out of the question, not all bread is off the list.

Twenty years ago, gluten-free breads, cookies, and crackers were hard to find, but now there are decent options in most grocery stores.  Sometimes, though, you don’t want a decent option, you want a great one.  Here are some of the winners I’ve found in my year of living gluten-free.

  • GlutenWize cookies and granola (pictured).  My mom knows the owners of GlutenWize, which is lucky, because otherwise I probably wouldn’t have heard of them.  I’ve had a lot of gluten-free cookies in the last year, and theirs are, hands-down, the best.  Their soft and chewy granola is dangerously addictive, too.  My top picks are the oatmeal raisin cookies and the maple granola.
  • Gorilla Munch cereal from Nature’s Path.  Crispy, corny, sweet goodness.  It’s on the expensive side, though, so my go-to cereals are Chex and GF Rice Krispies.
  • Schar gluten-free breads.  Bread products are some of the hardest to get right, and I’d had some really bad attempts, but Schar has good pre-made breads and also a nice boxed mix.
  • Bob’s Red Mill‘s gluten-free All Purpose Flour.  For when you just have to bake something.  I substitute this one-for-one for wheat flour in my recipes, and it always turns out well.
  • King Arthur Flour‘s gluten-free Pancake Mix.  This makes light, fluffy, classic pancakes; they’re easy to cook and very tasty.  They can be made into waffles, also, but I’ve never tried that.

I am still on a quest to find some amazing gluten-free pasta, pizza, and bagels, and I’m open to suggestions!  What are your favorite gluten-free products?

Automating Daily Tasks

You know how when you are exhausted, nauseous, and headachy, all you want to do is make an emergency run to the grocery store for some toilet paper? Yeah, me either. Having and treating a chronic illness takes up a lot of energy, and makes everyday tasks and errands more daunting and more draining. I try automating daily tasks as much as possible, so I have fewer things on my to-do list.  Here are some things I’m glad not to worry about:

  • Going to the bank to check my account balance.  I access my accounts online (but not from public computers – a secure machine is a must!).
  • Pulling out my checkbook and stamps to pay bills.  Every month I get an email from my cell phone company – they tell me what I owe, and that they’ll take it out of my linked account in two days time.  This lets me review my bill in case any weird charges show up, but means that I don’t have to lift a finger beyond that.  Some of my other bills I also pay online, although sadly not via an automatic process.
  • Shopping for dog food.  Rather than going to the grocery store to sling around heavy bags of kibble, I have dog food delivered on a monthly basis.  This type of subscription delivery service is useful for anything you use at a steady rate (vitamins, snacks, tissues, shampoo, etc.).

Most of these are small tasks, but they add up.  I definitely recommend seeing if your bank/utility providers/online retailers of choice offer these kinds of services.

Do you have any other tips for automating daily tasks or cutting down on time-consuming errands?  Is there anything else you put on automatic pilot?

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Going Gluten Free

Several years ago I learned that celiac disease can cause migraines, and can present without gastrointestinal issues.  So I asked my neurologist to consider celiac disease as a possible cause, and he agreed to order a blood test to check for characteristic antibodies.  It came back negative.  I didn’t know much about celiac disease at the time; specifically, I didn’t know that the blood tests for celiac have a high false negative rate.  So I assumed that the celiac disease had been tested and discarded, and I should look elsewhere for an explanation for my migraines.  This was a mistake.  It turns out that about 10% of celiac sufferers are antibody-negative.  Further, gluten-intolerance (which is separate from celiac disease, and will also yield a negative antibody result) can also cause chronic migraines.  I had dismissed a promising treatment option on the basis of an imperfect test.

When I learned this, I decided to go gluten-free (GF) and see if I improved at all.  The catch is that it can take six months on a GF diet to see results (although most people see a difference sooner, some within days).  Guess who took five months and three weeks to notice an improvement?  (Sadly it did not make me feel completely better, but I’ll take what I can get!)

Keeping to a GF diet is not so hard when I eat in – there are lots of restricted foods, but lots of good alternatives.  The toughest part is eating out – many servers at restaurants don’t understand which of their foods contain gluten, and many restaurants don’t have policies in place to prevent cross-contamination.  But it is doable, and it is definitely worth some sacrifices to feel better.   And when I mess up and accidentally eat gluten, the way it makes me feel reminds me why I do this.

In future posts I’ll give advice on maintaining a gluten-free diet, secret sources of gluten to look out for, and favorite GF products.  If you are considering going GF, try and stick with it for a while.  The results might not be immediate, but if you do see them, they are so worth it.

Please remember that this post is the opinion of the author and should not be replaced for actual medical advice or attention.  Please learn more about celiac disease here and more about gluten here.  Lacuna Loft supports healthy eating whether gluten-filled or gluten-free!  Find what works best for you!

Favorite Product: Hydrocolloid Bandages

Hydrocolloid bandages may be my favorite non-prescription medical supply.   They are basically bandaids* on steroids.  Normal adhesive bandages have some kind of fabric pad stuck to a larger strip of adhesive tape.  Hydrocolloid bandages are a uniform, soft, thick, adhesive polymer and protein matrix, but I don’t really care what they are made of, I care how they work: like magic.

These bandages can be cut to size (even for very small areas, like 1 square centimeter).  They are latex-free (yes!).  They keep the wound fully covered, keep edges in place, and keep things moist but not wet – perfect for speeding up healing.  You can leave them on in the shower.  If you use larger pieces they maintain pressure, so they are good for areas which might scar (the pressure can help reduce scarring and soften existing scars); they’re not as good for this as scar treatment bandages, but they do in a pinch.  I use them for cuts, scrapes, small wounds, and acne lesions, but they are also good at keeping nasogastric tubes (and presumably other tubes) in place without irritating the skin like a lot of medical tapes do, and they are used to treat bedsores.  Don’t use them for very serious, deep wounds, or burns, or anything you wouldn’t use a regular bandaid on.

Most bandage/first-aid brands, including store brands, carry hydrocolloid bandages, in stores they are always in the bandaid section (and are sometimes sold as blister bandages).  I always have some on hand.

* “Band-Aid” is a registered trademark; I am using “bandaid” here to refer generically to that kind of adhesive bandage.

** while some links are affiliate, all ideas and opinions are those of the author