Dealing with Flare Ups & What NOT to Say to the Chronically Ill

No matter how careful you are to make sure you avoid gluten and do things to try to be healthy, such as drinking lots of water, taking vitamin supplements and eating healthier, sometimes you still end up having a flare up.  Unfortunately, that is simply the nature of life with autoimmune disorders and chronic illness.  Sometimes there just isn't anything you can do to avoid it, no matter how hard you try.

Many things can affect and trigger a flare up.  Things such as changing seasons, stress, illness such as a cold or the flu, time change, unexpected life changes, etc.

This year has been a very difficult and painful year for me and my family, as we've gone through many large and unwelcome transitions.  Since the beginning of August, we lost my grandmother, then my father-in-law only a month later.  Pressures and changes at work for both my husband and I have brought us not only high stress levels, but uncertainty about our future.  With the onset of Autumn came seasonal colds, flu and other illnesses that we've been exposed to out and about.  So many things can trigger a symptom flare up.  These triggers, as well as the symptoms, can be vastly different in different people.  I'm currently suffering through a flare up.  I haven't been glutened (always my husband's first question) and I have been taking my vitamin supplements (his standard second question), yet I am in the middle of a flare up.  The simplest task leaves me feeling completely physically, mentally and emotionally exhausted.  I have been in the bathroom far too much for comfort over the past couple of days with diarrhea and upset stomach.  My head is pounding and, quite honestly, I can barely keep my eyes open to write this post.  My thoughts feel jumbled and, at times, I struggle to find the right word (I swear it is RIGHT on the tip of my tongue!).  My eczema on my arms and behind my ears is aggravated and I just want to crawl under the covers and not come out until Spring arrives!

How do I deal with a flare up like this one?  I'm so glad you asked!  First, know that there is NO magic cure or quick recovery treatment.  Your body has to take as much time as it needs to get over the flare.  However, there are some things you can do to help your body along and make it a little easier for yourself.

1. Stay hydrated!  I sometimes have a hard time with this one, though it is always something I will stress to other people.  It is so important to stay hydrated!!  It will help you replenish your body and will give you more energy (don't laugh - I can hear you now..."Energy?  What is that?!")  I know that seems like a foreign concept to those who are chronically ill because sometimes just the effort of getting out of bed can take every ounce of energy you may have.  But, staying hydrated will boost your energy level, even if it is just a little bit.  After all, every little bit counts when you have chronic illness.  Hydration also helps to lessen or eliminate muscle cramps and spasms.  When I have a flare up, one of my symptoms that gets worse is muscle spasms in my right arm.  I generally have some every day, but usually they are minor and don't cause me pain.  When I have a flare up, however, the spasms are hard and can really cripple up my arm for a time.

2. Allow your body to rest.  Sometimes it can feel like all you are doing is resting.  My work week gets to be long and by the time the weekend comes around I am usually done in.  It is difficult to accomplish things I need to around the house.  I'm learning that I need to do small tasks and take breaks frequently to help prevent from becoming severely drained and unable to function.  When your body is telling you it needs a break - LISTEN to it and obey!  You are not being lazy, you are simply giving your body what it needs.  I know that sleep can be difficult to come by when you are having a flare up due to insomnia or body aches or multiple trips to the bathroom because of gut issues.  Yes, our bodies require sleep.  It is exceedingly vital.  However, I am talking here about resting.  Sit down, lay down, whatever you need to do to allow your body and mind some down time.  For instance, I am writing this post on my laptop while in bed because I don't even have the energy to sit at my desk.  

3. Eat foods that aid in lowering inflammation.  Some good anti-inflammatory foods are bone broth, fish for Omega-3 fatty acids which can aid many health issues, fruits such as pineapple and blueberries, green tea and even dark chocolate.  I know women everywhere are cheering for that last one!  You can research anti-inflammatory foods online.  A really great and informative post about anti-inflammatory foods can be found here.

4. Take a probiotic and vitamin supplements - research to be sure they are gluten free.  My doctor advised me to take a probiotic that is at least 30 billion live cultures per serving.  In my own research I have found that it is generally advised that someone with chronic illness should take at least 50 billion live cultures or more per serving to get the most benefit from it.  To learn more about probiotics and what they do, check out this article.  My doctor also advised me to take prenatal vitamins, though I am well past the age of being able to get pregnant.  He told me that because I have multiple vitamin deficiencies, a prenatal vitamin would benefit me the most.

Now, for those who are not chronically ill, but have someone in your life who is...please never, ever, EVER say any of the following to that person or anyone who suffers from chronic illness:

5. I wish I could just lay around all day and do nothing.

4. Now that you know what is wrong with your health you shouldn't be getting sick anymore, right?

3. You're lucky.  I'd love to be sick just long enough to lose those few extra pounds I've gained.

2. No one could be sick that much, you must be faking it!

1. But you don't look sick!

On any given day, someone living with chronic illness has to push through the pain, fatigue, brain fog, anxiety and more just to attempt to function as if they were a healthy person.  You have no idea how much energy it takes to pretend NOT to be sick!  Just because we are at work, grocery shopping, doing laundry, attending events, do not mistakenly think that we aren't suffering.  We've just become very adept at keeping our suffering hidden.  We aren't trying to get attention.  It may come as a surprise to you, but we don't enjoy being the center of attention due to our health conditions.  We don't want your pity, your scoffing, your disbelief.  We need your patience, compassion and understanding.  What we are going through is difficult, can be isolating and it is an every day battle.  EVERY. DAY.  It will never go away.  This is our life.  For the rest of our lives.

Learning Self-Care to Enjoy a Better Life

When I first heard the term “self-care” many years ago, it didn’t quite compute.  If you’re like me, when I was growing up, I was taught to take care of others before my own needs.  It is something that is completely engrained in me and is second nature after more than 50 years of being alive.  I’ve always worked hard to follow that in my own life, sometimes to my own detriment.  I’ve always believed, wrongfully so, that my own needs are always secondary and if I am taking care of myself, I am being selfish.  Just like everything else in life, this area requires balance.  That balance has been and often, still is difficult for me to find.  Yet, self-care is so vitally important to our well-being.  I mean, if you don’t take care of yourself, how can you possibly take care of anyone else?

Anyone who has ever flown has sat through the instructions from the flight attendants prior to take off.  One of the most important instructions they always give is about the oxygen masks that will pop down from the overhead compartment in case of loss of cabin pressure.  What is it they always, without fail instruct the passengers to do?  Put the mask on YOURSELF before helping any small children or incapacitated person near you.  That is because if you lose consciousness, you are incapable of coming to someone else’s aid.  In other words, if you don’t take care of yourself first, not only will you suffer, but so will those around you.  Self-care is important to everyone, but especially those of us living with autoimmune disorders and chronic health issues.  Our bodies require more self-care than most in order to be able to function at any given time.

So, what does self-care look like?  I imagine it can mean many different things to many different people.  Here are some things I’ve learned about self-care along my own journey.

1.      Learn and abide by your limitations

That doesn’t mean, let your limitations keep you from living your life as fully as you can or to use your limitations as excuses to keep from doing things.  It just means that we need to listen to our bodies.  No one else knows your body like you do.  You know what activities require extra energy from you and what activities wear you down.  In my own case, I have learned that I cannot plan multiple activities for the same day or even just one all-day activity.  My body rebels against me when I expect too much from it.  I need to honor that by planning accordingly and resting when necessary.  Yep, it means that often I have to say no to activities and events that I would LOVE to take part in.  But sometimes self-care simply means saying no.  It is ok to say no.  It is not the end of the world.  And it doesn’t mean that you always have to say no.  If I say no to things that I know will prove to be too much for my body to handle, that opens up opportunities for me to say yes to other things I may not have been able to do before.

2.      Get plenty of rest

All of us need rest.  Those of us with chronic illness or autoimmune disorders require more than normal.  Honor that.  Yes, we need to get plenty of sleep at night.  Each person’s needs may be different on how much their body actually requires versus someone else’s needs.  Sleep is not the only form of resting.  Down time, just kicking back with no activities and taking time to relax for a while helps to recharge your body, as well.  My favorite way to relax is to grab a cup of hot tea and a good book and just lounge and read.  I have so many people tell me that they don’t have time to do sit and read.  I understand that.  The busyness of life gets to us all at times.  This is an area of your life where you need to make time.  Carve out in your schedule a little bit of “me” time to sit and relax and rest your body and mind for a little while. 

3.      Hydration & healthy eating habits

Again, this is a vital part of life.  I have a bad habit of drinking one soda per day.  I love the carbonation.  But even one per day is so unhealthy for my body.  And, I’ve begun to notice different things about my body when I drink soda instead of water.  I get more muscle cramps, my joints feel swollen and achy, I end up feeling sluggish and fatigued throughout the day.  When I am drinking plenty of water, I have found that I have more energy, I feel more focused throughout the day and the muscle cramps and swollen and achy joints are no longer an issue.  Making healthy choices for our meals is exceedingly important as well.  I love the summer and all of the fresh fruits, veggies and herbs I can purchase at the local farmer’s market!  When I was first diagnosed, my first response as I was learning to live gluten free was to purchase and consume the gluten free counterparts to what I used to enjoy prior to my Celiac diagnosis.  Sadly, most of that was crap!  The more processed the foods are, the less good they do for your body.  The more you can stick with less processed, more naturally gluten free foods, the better off you will be.  You will feel more energetic and be healthier overall.

4.      Spiritual health

My current personal Bible study is,  "Beautiful Brokenness "

I know this can take many different forms for many different people.  We are, at our core, spiritual beings.  For me, being a part of a church family helps me find my purpose, my joy.  I work as part of the worship and service team most Sundays and I love it!  It has grown me so much as a person to be a part of this great team and to be an active member of this church family.  My time on Sundays as well as the small group Bible study that I help facilitate really help me rejuvenate for each week.  The times that I have to miss for one reason or another, I can feel it down deep in my soul and I feel emptier and miss it so much.  Being plugged in to this church family feeds my spirit in ways nothing else I have found ever has.  Taking time during the week for my own personal prayer time and Bible study just adds to that fullness.  I have dear friends who take care of their spiritual health through yoga and meditation.  Others I know actually feed their spiritual beings through their art.  Whatever form it may take, setting aside time to care for your spiritual self is also very important

5.      Make time to do activities you enjoy

One of my favorite passions and hobbies, photography. 

This photo is two things that relax me, crocheting and snuggling with my kitties. 

This past year has not been a good one for me and my family.  While there have been some very good and enjoyable things about the year, there have been a lot of hardships and some big, painful losses that have really disrupted our world.  For most of the year, the activities that have always given me pleasure have taken a backseat and been set aside.  Some of these activities help keep me centered.  Since I was a young girl I have found release through art and writing.  Even if the only person who will ever see my drawings or paintings or read what I’ve written is me, it is still a way for me to get in touch with my innermost being.  I also enjoy photography.  We have to make time for the things we enjoy as well as those responsibilities we all have.  We aren’t meant to go through life just doing a job.  Yes, we need to work in order to make money to be able to pay for the necessities and extras, but we need to find hobbies that we enjoy, too.

6.       Take time for something silly and fun once in a while

Me with my cousins, Amy & Lori Ann taking some time for fun and just being together a couple of days after our grandma's funeral. 

At our last meeting of the Western Iowa Celiac & Gluten Free Living group, I passed out some little gifts.  Inside each pouch was a small notebook, a pen, a trinket reminding each person to never give up and a small bottle of blowing bubbles.  Yes, the bubbles may seem silly, but it symbolizes to me the simple joys we tend to forget about and set aside as adults.  I, personally, have fun blowing bubbles.  It requires very little from you and you can’t help but laugh and smile while you are doing it.  I’ve found that doing something fun helps ease away the tension and stresses of life.

Is anyone wondering what the small notebooks and pens in the pouches were for?  They were for each person to write down ideas in their own lives for how they can practice self-care.  So, now that you know what self-care looks like to me, tell me how you practice self-care in your own life.

Until next week, be well and be happy.