Living Well with New Year's Resolutions

New Year's used to be my absolute favorite holiday.  Ryan and I would write out our dreams for the year ahead. Then we would read through what we had written the year before and see what God had done in our lives.

Through a series of events, we stopped dreaming about the future. Life I guess threw us into survival mode, and it was hard to trust that the carpet would not get yanked out from under us again.

Some people say, you always have to keep dreaming.

Now, I say this. Ryan and I are not victims to the trials life through at us. We are survivors, and for the most part, even thrivers.  Life can be hard, but we are not helpless.

So, this year, I want to get back on my annual journal bandwagon, except this year, it is not dreams. This year it is commitments because we are not puppets to circumstance; we are not victims to our illnesses; we are not even survivors; we are thrivers if we choose to be. Life is not happenstance; it is what you make it. Yes, it throws you curve balls, but the resolve is not to just roll with it, nor is it to get up and just expect life to be good again. Either one of those options displays the belief that we are powerless puppets of circumstance. The resolve is, what are you going to do with what you have? My illness does not make me powerless, neither does yours. It may limit you at times; it may force you to get creative, but under no circumstances does it stop you or even limit you from pursuing the desires God has put in your heart. He will always give you the ability to do what He is motivating you and calling  you to do. It may look different than it did before illness, but the joy that follows will be the same joy. You are not a victim to pain any more than you are a bystander when life is good. I'm not saying "name it claim it and your pain will go away". I'm saying, take responsibility where you can and commit to move forward in ways that glorify God and enable you to enjoy Him, to enjoy the life you have, and enable you to bless others.

So, here are my 2019 commitments:

• This year, I will do my best to continue graduate classes.
• Ryan and I have created a LOT of time margin in our lives; it's how we cope with my being sick. This year, he and I both are committed to trying to work more hours and see how it goes.
• This year I am committed to writing regularly.
• I am committed to reading to our son.
• I am committed to continuing time with God in the mornings.
• I am committed to praying for more and more empathy to see my children the way God sees them, treat them with more and more of His grace, and to parent less out of fear of the "what if's".
• I am committed to catching myself when I feel guilty for pursuing the joys God has put in my heart.
• I am committed to continuing to eat healthy. Will I re-start exercise?  If I am reassured that it is safe.
• Here's the hard one: I am committed to not using distraction when life is hard but instead listening even more to my body and treating it with increased nurture.
• I cannot change how others treat me, but I am committed to not trying to please everyone, and if they are unkind, I will remind myself that others' anger is not my problem. 
• I am committed to spending time with friends when I am able.
• I am committed to allowing myself to receive God's love. 
• In full disclosure, I am tempted to get rid of Netflix and Hulu. I'll let you all know next year if I followed through on this one :).

These are not resolutions. They are not dreams. It does not take resolve to treat God, myself, and others well. It does not take resolve to give my fullest to what I was created to be. It takes courage, and it takes commitment. So this year, I am not writing out dreams OR resolutions, just commitments.

AND........I do have some dreams..........because I REALLY want to go visit my sister again. If you're reading this, I really miss you guys, Jen. So, maybe next year's commitment will be to save for many more of these trips to visit loved ones.

My life is filled with many good things, with wonderful people, and with a lot of time margin. It is easy though to get in a rut when you are chronically ill. Don't get back up and expect life to just be good. Don't just survive expecting it to be rough. Move forward with what you have; embrace life to the fullest you are called to embrace it; be the person in other people's lives whom they look at and think, "If they can be that brave, that genuine, that purposeful, I can have that courage too." Move forward with whom you are created to be.

So, what commitments are you considering for 2019? What are you going to do with the gifts and talents and weaknesses you have? What are you going to do, not just to embrace life, but to use it, to mold it, to create a life you love? One year from now, how will you be more of you were created to be?

You are a Hero

You are a hero. Do not tell yourself you are not.  Every day, you push through pain and fatigue and numerous other symptoms when most people would have been in bed? Every day you brave the side effects of medications to live the fullest life you can.  You usually do it without complaining. Others look at you and have no idea how hard you have worked to get to one event this week.  They have no clue that a clean kitchen is a major deal for you. 

My daughter has a t-shirt that says, "Heroes wear dog tags."  The struggle for those of us with chronic health problems is that we wear nothing that shows others we are exhausted and in pain and have pushed through the enemies (symptoms) our bodies face every minutes of our lives. Don't get me wrong, we don't want the glory, any more than a war hero does. If you know war heroes, you know they don't like to talk about it. I am in no way saying we are equivalent to a war hero, just that we are heroes, and we're exhausted from trying so hard to maintain any semblance of normal.
 

Others don't know that you ended up in the hospital from the sound of the shower or that you crawled to the refrigerator because you didn't have the strength to walk. They don't know that you had another anaphylactic reaction to a medication and had to be rushed to the ER.

So, you say, is this post about pity?  No.  We all know that there are those in our lives who get it and those who don't and that we have no power to change others.  What is the point of the post?

It is this: no matter what message others give you; do not under any circumstances let a negative self message enter your head.  You get to know that you are a hero. You get to know you are not lazy or faking it or looking for attention or trying to get out of anything. You get to be your biggest cheerleader. You get to encourage yourself that it is okay to rest, to take care of yourself, to not believe that you are bad or less than just for having a disability that no one can see. You get to give grace and kindness to yourself. You get to be proud of the fact that you made it through a shower. You get to be proud of yourself when you can't make it through a shower and you instead make a healthy choice to take care of yourself and rest. Do not let the culture, your disability, or your own expectations determine your self image.

Media Freeze?

I often wonder how our lives would be different without television, internet, Facebook games, social media. I am guessing that most of us with chronic health issues use electronic media as entertainment to get our minds off of physical pain or other physical symptoms. What did our grandparents and great grandparents do?  Did that give them more life satisfaction without electronic entertainment?

I am guessing the answer is yes.  However, it is not easy to find substitutes. Holding a book in your hands can cause intense neck and shoulder pain if you already have chronic pain. Getting out of the house to go to a sports event is not always an option if you are too sick. What do think would be different in your over-all happiness if you went on a media freeze?

I know this is extreme, but I have also thought about, "What if we did not have internet at home?" In theory we could go to the library to use a computer.  Our library is less than two miles from us. Most of us have unlimited data on our phones. We truly could comfortably due without internet.  At $50 a month, that's $6,000 in ten years. I can think of a lot of things I would rather do with that money.

Would I get more done?  Ouch, I do not know. I do not feel guilty for relaxing.  Taking care of our bodies by resting when we need rest, instead of chasing the extrinsic value of productivity, is a healthy balanced perspective and role models self respect to the younger generation. However, there probably are times when media moves from distracting me from pain into "I don't need the distraction; I'm just wasting time" category.

What do you find are the benefits in your life of media entertainment?  What are the cons?  Would you go an entire week without media to experiment?  I find I cannot answer that question myself or am not yet willing to answer it; although, it might be nice to test the hypothesis and learn.  Would our physical and mental health be better? Would our finances be less strained? Would we socialize more? Would we be less numbed out and more in touch with our emotional needs?

What are your thoughts?

Warning Signs Part 2

Isolation: Isolation is another sign that my symptoms are getting worse, not because I'm depressed but because I'm needing rest.  If you find yourself withdrawing more than your norm, check with your body.  Are your symptoms starting to escalate?  Are you needing rest and self care?

Guilt: Telling yourself you should be getting  more done, that is a sign your body is needing more self care. Make sure you give yourself positive self talk and enough compassion that you are not trying to do more than you can or should.

Physical Tension: Stop, take notice.  Are your muscles relaxed, or are you tense?  Tension is the body's natural response to pain, but unfortunately, tension also makes pain worse. Once an hour, take a deep breath, and lower your shoulders and gain that body awareness so you gain more margin or so you go rest when you need it.

For me, Poorer Coordination is a sign that my health symptoms are escalating. This is my signal that I might be able to keep functioning, but I have to slow down even more.  If I don't slow down, I am liable to get hurt.  Give yourself permission to meet your body's needs for peace and for safety.

Decreased Concentration: Your brain cannot ignore pain, not subconsciously.  It is aware.  If you are struggling with concentration, stop and listen to your body.  Are you pushing beyond what it needs? Decreased concentration may be a sign that your symptoms are starting to flare.

• Slow down, rest, take deep breaths, ask yourself if you need one of your as-needed meds.  
• If you feel you have to keep going at that pace, then eliminate distractions.  Get everything off your desk except for one task at a time.  Make a to-do list, break it into micro steps, and do not move on until  you have checked off the current micro task. Stay in one room of the house and do not leave that room until you are finished with the current task.  Things that belong in another room can be put into a basket to carry out later.  Turn off radio or television. These are great distractions from pain IF they help keep you going, BUT if your body is struggling to concentrate on the task at hand, eliminating these distractions can buy you enough margin to get a little more done.  Again though, be mindful of what your body needs; sometimes taking a five minute break builds margin as well, and sometimes, we just need to go lie down and rest.
• Take a deep breath from your diaphragm every few minutes; exhale slowly, and lower your shoulders.  This gives the brain more energy and often builds attention span.

Appetite Change: It is normal to seek comfort food when your body does not feel good; it can also be normal to lose one's appetite when our body does not feel good.  Of course, we do not want food to be our first go-to, especially as comfort food tends to be high in carbohydrates, which is generally not good for chronic health. It is also not healthy to skip meals.  If you find yourself experiencing a change in your normal appetite, stop and listen to your body.  Is it telling you it needs self care?  Do you have a list of things that bring you comfort? What is your go-to when you are not debilitated but not at your best?  If you become aware of loss of appetite or of seeking comfort, you can then make a conscious choice of healthy forms of comfort.  No guilt here; sometimes carbs are all that will go down when we are nauseated, right? The point is to be mindful.  Appetite change can signal that your body is pushing too hard and needs you to slow down and attend to physical needs.

Inability to feel emotions: The brain can only process so much input at once.  Sometimes it shuts off emotions in order to have more energy to cope with physical symptoms.  This may be a sign that your body needs attention or that your physical symptoms are starting to flare.  

Yes, these are all also signs of depression.  That does not mean you are depressed; although it may IF the symptoms/warning signs last for a more than hours and IF you find yourself not able to experience pleasure for a good chunk of time (days), or if you are having crying spells.  Most of the time, even when we do not feel good, we are able to find our go-to's that bring us pleasure.  If you are able to do that, that signals that your responses, your signals, are not depression but a warning from your body that it needs care.

I find it helpful to catch these early warning signs as sometimes it helps to prevent a full-on flare-up. What are some of your warning signs that your physical symptoms are escalating or about to escalate?  What have you found helpful? 

Warning Signs Part 1

1.  Irritability: the number one sign that we are not listening to our bodies, that we are ignoring our needs.  Stop and listen.  Your irritability is NOT a sign that you need more mental stamina.  It is a sign that you need more self care, more compassion, more mindfulness of what your body needs.

Specifically, for me, irritability is my sign that my physical symptoms are spiking and that I either need to take a med or rest.

Don't wait until your body can't function.  Listen to what it needs before you get to that point.  Don't judge your mood as you being mentally weak.  Take it as a sign that your body needs attention.

How to Prioritize your Energy

Chronic health can be unpredictable.  However, most of us have a time of day when we tend to have more energy and be at our best.  It is important to know this, to communicate it to loved ones, and to maximize your resources efficiently. 

For me, the window starting between two hours after I wake up (likely 2 hours after coffee) and two to three hours after that is when I tend to be at my best. Therefore, this is the time of day I work.  This is the time of day on my days off that I try to spend with my husband. Don't get me wrong; we spend time together in the evenings, but that is not emotionally intimate time.  It is time when we are exhausted and zoning out.  Pay attention to your best time of day, and plan around that, whether it is for social outings, time with your significant other, or work.

Don't go full force during this time.  I know, I know, it is tempting because you fear the window closing.  It is better to pace yourself energy wise but at the same time to make sure that your top priorities happen during that time. The dishes can wait. The laundry can usually wait.  Your relationships and your ability to work for money if you do will be the most beneficial if they are the priorities during that time.

My own spirituality: That still happens for me about first thing in the morning.  Although it may not be my most physically energetic time, it is still how I prefer to start my day.  It sets my mind on things that matter and keeps me from relying on my own strength or lack thereof.  It keeps me listening to what matters in life.

Finally, make a list.  Then prioritize the top 3-5 things you want for that day.  Highlight them.  Anything else is icing on the cake.  Unless you are in a new relationship, make sure your family is written on your to-do list or in your calendar.  It is too easy to get swept away with what you think needs to "get done".  People have to come first and not putting them on your list will make it too easy for them to get the least of your time and energy, which also means, you will enjoy them less and have less joy in your day. Those of you in new relationships know you don't have to write that person in your calendar; it is easy to make them a priority.

Extreme Frugality: Cutting Costs When You Have to Cut Work Hours

What do you do when you suddenly cannot keep working or have to cut back to part time due to your health?  This answer is going to be different if you are single vs. if you are a duel income  household. I've talked in other posts about resources for those who are single or do not have a second family income on which to rely.  For most, this includes either living with family or obtaining subsidized housing.  This article is for those who have a partner and are suddenly adjusting to a decrease in income.

1. The easiest initial answer is for the healthy partner to work more hours.  This is not, however,  a good long term plan. The healthy spouse will suffer burn-out, and the relationship will not get the attention it needs.
2. Lower your housing costs.  We have done this over the years by renting out an extra room in our house. This is the least life changing option.  The other option is to downsize your home. 
3. Consider utilities.  We noticed that re-insulating our roof and having a newer furnace and refrigerator significantly lowered our monthly gas and electric bills to the extent that it did not take long to recover the initial cost of those items.  Check with your city to see if there are programs that help with these items, or check with your taxes to see if you can deduct these items.  Most first ring suburbs have large discounts or assistance with updates simply because they want to keep the neighborhood updated.  Many of these are not income based, just community based.  Additionally, switch to LED lights, be willing to be uncomfortable with the temperature in the house to reduce heating and air conditioning, always turn off lights when you leave a room, slightly lower the temperature on your water heater, clean your furnace filters every six months, compost and reduce your garbage bill. Hang your clothes to dry.  This not only saves on your dryer bill; your clothes last longer this way.
4. Barter.  This can be done in many ways.  You can barter childcare with friends, meals for cleaning, etc.
5. Let your kids' grandparents know that you want clothes for your kids' birthday and Christmas gifts. Your children will not suffer, and most of the time, grandparents still find a small toy to give.  Small children do not care about the cost of the toy.  
6. Shop garage sales for clothing, or look online at used clothing.  I now occasionally shop thrift stores if I have the energy.  However, thrift stores tend to be more expensive than garage sales or online websites like Craigslist. Make sure to re-sell what your kids have outgrown.  
7. Give.  EVERY SINGLE TIME I gave away my kids' outgrown clothes, we would miraculously be blessed with someone giving our kids hand-me-downs.
8. Baby Gear: We used cloth diapers, not the fancy cute ones but the old fashioned kind.  They are the cheapest.  We used them because I have severe allergies, but we did the math and learned that we saved over $2,000 by buying cloth and washing them ourselves!  You don't need a changing table; use a changing pad.  We also found that we almost never used the cribs.  That is a more personal decision.  If you are going to use a crib, find a used one.  We found one that had pretty much never been used for about 25% of the cost (and then didn't really use it much). Look at thrift stores or garage sales if you are going to buy baby gear. Check with United Way.  Many local fire stations give away new car seats. While nursing your baby is significantly cheaper than formula, this is a very personal decision.  For us, it was something I wanted to do anyways, and as a side note, it saved us a lot of money.
9. Food.  For our now mostly adult family of 4 (adolescent boy who eats more than we do, and three adults, two of whom are gluten and dairy free), we can get our grocery/toiletries/cleaning products down to $200 a month without coupons!!!  We do not do this every month because we do not have to do so, but when we want to save extra this is the easiest way to do so. How?
   
   -No cereal for breakfast.  Cereal and milk are expensive.  You can still get your dairy, just not in an expensive bowl of cereal.  Oatmeal is ridiculously cheap compared to cold cereal.  Pancakes, muffins, French toast, eggs and sausage are about 20% of the cost of a bowl of cold cereal.  These items make breakfast for about .30 a person.
   -No packaged snacks.  Bake on the weekends so you have snacks for the week.
   -Make home made soup for lunches.  If you add home made banana bread, your lunch will be less than .50.
   -No juice.  Fresh citrus fruit is healthier and significantly cheaper. Drink water. Your body will thank you.
   -Only purchase produce that is in season.  You can get crazy deals at times.  When I do, I buy in bulk and freeze extra for winter.
   -Meal plan around the on-sale items at the local grocery stores, and cook from scratch. Pasta, rice, and potatoes are very cheap.  We can get a 10 pound bag of potatoes for $4. Buy meat in bulk when it is on sale and freeze it in family portion sizes.  A few months ago, we found whole chickens for .60 a pound. I bought enough to get us through several months.  We have also at times bought meat directly  from a farmer.  Chicken, turkey, and pork are significantly cheaper than other meats, but make sure you are getting enough iron if you are not a big beef eater.  Rice and bread are fortified with iron, and spinach is a great source of iron.  There are many meals you can make for $1-$2 a person that are nutritious and can include meat.  We tend to eat dried beans and lentils for protein at least a couple meals a week.  Rice with dried beans, seasoning, and veggies is less than .50 a meal.  Look back at my .60 a pound for chicken.  You do not need to eat a pound of meat a day. A few ounces is sufficient nutrition if you are also getting other sources of protein. So, even if you eat meat with your meal, you can keep your dinner easily around $1 per person even if meat is more than that .60 a pound.
   -So, breakfast around .30 a person, lunch at about .50 a person, and supper between .50 and $1 a person yields you $156-$216 per month for a family of 4.
   -Make your household cleaners.  Because of my severe allergies, we rarely buy cleaning products.  Occasionally I will buy some at the local dollar store.  I add grapefruit seed extra to water for sanitizing my kitchen.  This is not only completely safe, it's insanely cheap.  Baking soda also makes a great cleaner and is very cheap.  Vinegar is another great household cleaner.
   -I have found great cosmetics at the local dollar store. We also purchase our soap and shampoo at the local dollar store.  If you cannot find what you like there, match coupons with sales at other stores.  Also, your skin will thank you to take a break from cosmetics on the weekend.  
10. Learn to cut your own hair.  If 4 people are getting hair cuts every month, even at the cheap salons, this is at least $60 a month, which is $720 a year.  Our daughter and I had long hair for years because you do not have to go get it trimmed and styled terribly often.  I would cut her hair, and I cut my own bangs for years.  My husband cut his own hair, and we cut our son's hair for many years.  There are DIY videos to learn this hack if you are unsure of yourself.
11. Stay out of the stores, and if you have to shop, carry cash only.  This saves on gas and eliminates extra spending.
12. Transportation. Get by on one car or learn to take the bus or carpool.  Even economical cars cost over .50 a mile to drive by the time you add insurance and wear and tear on the vehicle. Live close to work; you will be shocked at how much this saves in vehicle expenses!
13. Use cloth napkins and rags instead of paper napkins or paper towels.

I recognize that some of these are extreme.  For us, when we initially cut back to one income, we were significantly less stressed using these money savings hacks than we would have been with my husband trying to completely make up for my lost income.

What are ways you have found to cut expenses so you are not financially stressed when you are not able to work as many hours as you once did?

Chronic Illness and Parenting Fears

Living with chronic illness can create some unique parenting fears.  Here is a list I think is fairly common:

1. What if this is genetic, and my children develop it?  Our seventeen  year old daughter already lives with chronic pain, and the pediatrician recently suggested testing her for autoimmune diseases.  Of course any parent would rather suffer themselves than watch their child suffer, and this is one of our biggest fears in this community, right?  I can only hope that I have role modeled to her how to live a purposeful and joyful life no matter what life throws at her, but I still would hate to see her suffer.
2. What if, because of my disability, I can not keep my child safe? This was a concern when our son was born and when our daughter was a baby.  Thankfully, most autoimmune diseases go into remission during pregnancy and the few months after birth. 
   
   -I do remember though having to make some adaptations: keeping a pack-n-play on the main floor so I was not carrying him up and down stairs too many times, carrying him in a sling so I could safely have a handle on the stairs' railing if I did go up and down the stairs.  I do not think I ever lost my balance with him, but it was something I wanted to avoid at all cost. 
   -I also remember having to ask for help when our daughter was a baby, not every day, maybe a couple days a week until she was about 3 and my symptoms then abated somewhat.  It is a humbling thing for a young parent to have to ask for help, probably a hard thing for anyone, but there was a day I had to call a neighbor to help watch her until my husband got home, and there were many days we had to ask my parents or aunt to help with her or to drive us to her appointments.
   -I also remember having to be quite creative; putting towels on the kitchen floor and enough chairs to keep her safe from falling gave our daughter about 30 minutes of play in the sink while I could sit for a bit. We did some other outside-of-the-box things when our kids were little: indoor sandbox on top of a tarp, zip line and swings hanging from the basement ceiling, indoor climber slide, mini trampoline.  Believe it or not, we did this even in a small two bedroom house.  It enabled me to make sure they could get their energy out when I could not walk to a park with them.
3. What if my child resents me for having a disability?  Guess what? We are not alone in this. Every child resents their parents at some point in time, and it is okay for our kids to have and process their emotions about our disability.  It does not make it selfish of them.  I choose to not feel guilty, but at the same time I try my best to give empathy to them. It is a delicate balancing act.  Life is not fair, and it is okay for them to grieve that.
4. What if my child grows up too fast and tries to take care of me instead of being a carefree child? They will.  I do not have an easy answer to this one.  I do tell my kids, "Thank you for caring and being concerned.  You do not have to fix this though." (unless it's something simple like carrying groceries into the house).  We all get sad over this one, and we all hope that they develop empathy out of their circumstances.  It is also probably why we tend to not say no to every opportunity they have for socializing with their peers. 
5. What if my child thinks this is normal? Every child thinks that how they grew up was normal, until they hit their late teens/early twenties.  What do we do about  this?  All of us suffer somewhat to try to keep their lives as normal as possible.  How do we explain to them that when they are adults, it is good to sit down at the dinner table as a family and good to have more predictability than we are able to provide and good to plan vacations even if it is just camping and good to do things together?  I try my best to give the kids my attention each day.  The truth is I can't do many of these "normal" family things.  I am sure you face this too. It is important to expose our kids to the typical, healthy culture while still valuing the adaptations we make as a family with a disability.  I doubt I keep this balanced as well as I would like, but it is good to try. Also, asking grandparents to assist in exposing them to cultural norms is helpful.  I have found that my siblings have been a great help with this as well, as have friends.
   
   What are some of the parenting "what if's" you have found yourself having as you parent with a disability?  What have you found helpful?

A Balanced Life

My disease affects my balance, not every day, but most days.  If I did not take medications, it would be every day. 

It struck me this morning.  I am very driven.  Before I got this disease, I would over-do it, trying to get more done in a day than I could.  Now, I keep a balanced life.  I tend to maintain my daily meditation, rest when I need to, keep a balance between work and family life, focus on what matters in the long run, and pretty much never get stressed.  I take life at a pace that is healthy.  Why?  Because my disease has taught me that. 

My disease has taught me to treasure balance in my life:  physically, spiritually, emotionally, relationally, socially, cognitively, at work, etc.

I would not trade that.  I can not always walk without a cane or a wheel chair or someone holding my arm, but I have more balance now than I have ever had before, and I have my disease to thank for that.  It is not always the enemy.

What are some good things that your symptoms have taught you about life?  How is your life better than it otherwise would have been? This does not invalidate your suffering.  We all wish we could live a symptom free life, but what is the good that has come out of your suffering? 

Faith, Suffering, and the Metaphor of a Healthy Body

Most people of faith will tell you that their faith brings them comfort when they are suffering. 

1. Some believe that suffering gives them more approval from God.  
2. Some believe that suffering has meaning and purpose in and of itself (logotherapy).  An old song says that what doesn't kill you makes you stronger.  The Bible says that suffering produces perseverance, which produces character, which produces hope (Romans 5:3).  Please never tell someone this though unless you are willing to suffer with them. Suffering only produces character when it is glued to empathy, whether that empathy comes from a loved one or from God (see verse 5 of Romans 5). If you are not able to be genuinely empathic towards those who are suffering, stay away.  You will get in the way of their journey. We have had people tell us tritely that our suffering would produce character.  They were never people who loved us through it, and while they are still a part of our lives, they are no longer a part of our suffering journey because we will not allow others to get in the way of our growth.  Be discerning about whom you let in on your journey.
3. Some believe that God has suffered and, therefore, suffering brings us to a closer path with God. 
4. Many believe that God loves them and comforts them in their suffering.  

If you are a person of faith, how does your faith bring you comfort when you or a loved one are suffering?

Here are some items from my faith that have inspired and encouraged me.

The Christian Bible uses the metaphor of believers being like a body (genuine empathy).  When an eye suffers, the whole body suffers, and when the hand rejoices, the whole body rejoices.  We are to carry each others' burdens and share one another's joys.  My dear aunt taught me that if you awaken in the middle of the night, it often means you are supposed to pray for someone.  This means that we are never alone and that we have belonging even if we can't do what we used to do.

I don't know how some heroes of the faith continue to talk about their deep peace in the midst of grief, their peace that they will see their loved one again.  All Christians believe this, but expressing it and living it out, takes it to a deeper level.  These are the people, the members of the Body who inspire us to draw closer to God.  These are also some of the people for whom we are to pray when we awaken in the middle of the night.  Even Jesus asked His friends to pray for Him in the middle of the night.

Christians believe that if someone believes that Jesus is God and died for their sins, they can ask Him to forever be their Lord and Savior, to follow Him, repent of their sins, and He will forever be with them in this life and the next.  I've seen this deep, passionate faith.  I've seen it in my peers who face the trauma of potentially losing a loved one.  This doesn't mean they don't grieve; it means they hold on to their faith that God is joining them in their suffering and that we are promised eternity with a good God and with people we love who love Him. We still grieve.  We still experience denial, bargaining, anger, and sadness.  However, in the midst of that, we know we are not alone.  

The Christian Bible also teaches that Christ is the Head of the Body.  This also means that in suffering or rejoicing, we are never alone.  He is always with us, and He understands our suffering because He suffered.  A healthy body isn't one that feels good all the time.  A healthy body is when we don't ignore suffering but acknowledge it and care for one another. A healthy body is connected/mindful of the needs other parts might have, and recognizes that every part has purpose, value, and belonging no matter what.  A healthy body embraces that we are loved and wanted. A healthy body loves and wants. (This metaphor works socially, but it also works literally.  If you stop fighting your pain, listen to what your body needs, and not see your body as the enemy but as having purpose no matter how disabled, you will be mentally healthy and no longer fighting with yourself.) My ear is not bad.  My balance mechanism that responds with vertigo is not bad.  The noise in my ear is not bad.  The pain is not bad.  They are reminders that I have value, that I belong and have purpose, and that my heroes, especially Jesus, understand and care about my suffering.

Belonging, purpose, hope.  Suffering can at times bring these beautiful things to us. If you are a person of faith, how has your faith helped you in the midst of suffering?

Don't Apologize

So, you're going about your day, and somebody says, "We didn't know you had that disability; someone should have told us", or perhaps they imply you or someone else should have told them.

Okay, this is a demanding and insulting statement.  How can someone possibly predict what they need ahead of time in every new situation?

Our initial reaction might be to apologize, but don't apologize for being human.  You are valuable.  You do not have to be God and predict your future needs any more than someone does who does not have a disability.

Simply state, "I hear that you are uncomfortable not knowing what my needs might be.  I wish too that I could have known ahead of time what I would need.  Unfortunately, this is not something I can always predict.  I  have learned though that I normally can compensate on my own and that when I cannot, I can state what I need once I figure it out.  Thank you for being open and flexible as I figure out what I need."

Having a disability is a personal thing.  You get to decide to whom you disclose it, if and when you disclose it, how you disclose it.  If others are uncomfortable or feel their own inner need to people please or predict, that is not your job to fix, especially ahead of time.  If you want to, you can empathize with their discomfort, but it is not your job to fix their discomfort.  It is their job to sit with it. Discomfort is not a bad thing, and it is not your job to make others comfortable with their own emotions and needs.

Your job is to sit with your own hurt or anger, to process through it, and then to decide if it is worth your energy to confront the person or to let it go.  Their demands on you to be more transparent and not have boundaries are an insult.  Recognizing it is an insult will pull you out of the anxiety that arises when others are anxious about your disability.  Recognizing that they have invaded your boundaries will also enable you to feel your hurt feelings and then decide what you need from them going forward.  Do you need more space emotionally?  Do you need to be less transparent?  Do you need to be more transparent?  Trust is earned.  You do not have to freely give it away to family, friends or co-workers. In a serious situation, what you need after your boundaries have been violated might have to be verbally negotiated, such as the statement above that I gave about not being able to predict your needs ahead of time, and that you will communicate your needs once you do know what they are. In less serious situations, it can just be that moving forward, you create more emotional space with that person and do not give too many details too quickly. The goal here is not to make them feel guilty or to change them but to change yourself, to change how quickly you open up and trust.  You do not owe it to anyone to disclose that you have a disability unless you need something from them and then need to ask for help.

Triggers

Sometimes flare-ups of symptoms strike without warning.  (Note I say flare-ups because most of us are never symptom free, but there are those days when they flare up badly enough that it is difficult to function.) We can not always predict them; however, some of the time we can.  The importance of knowing triggers is two-fold:  you feel like less of a victim if you know when it is coming, and  you can schedule in extra self care on those days.  Here are some common ones:

• weather changes, especially changes in barometric pressure/storms
• caffeine
• alcohol
• sugar
• salt
• beef
• dairy
• wheat
• corn
• eggs
• nuts
• florescent lights
• loud noises
• flickering lights
• too much exercise or not enough exercise
• dehydration
• stress
• not enough nutrients (magnesium, potassium, calcium, B vitamins, Vitamin D.
• not enough sleep
• some medication side effects

What brings you comfort that you can use when needed?  Here is a list of mine:

• comfy sheets and blankets and pillow
• hot chamomile or peppermint tea
• a hot bath
• the hydro-massage table at my gym (this is why we got the membership)
• listening to a relaxation app
• okay, I admit, Netflix and Hulu
• medications that are for the purpose of easing symptoms
• rest 
• spending time with my spouse
• a quiet environment
• noise reducing ear muffs
• using my cane for safety (currently on the search for a wheel chair so I have more independence on the days I want to attend an event and don't trust my symptoms to keep me upright.)

What have you discovered can be triggers to your symptoms or to flare-ups?  What brings you comfort?

Reach Out

When we are genuinely interested in the well being of others, it is difficult to be depressed or feel that life is meaningless. Here are a few stories to hopefully inspire you.

I know someone with severe lupus who regularly focuses on enjoying her two young sisters and at times tends to their well being.  She also inspires others who are suffering by sharing the good that is going on in her life, but also by having the courage to be transparent when it is hard.

I know another person, who despite being in a wheel chair and suffering from rheumatoid arthritis, is always asking others how they are doing and genuinely listening when they answer.

I have a family member, who despite severe chronic pain, seeks out spending time with and praying for her grandchildren.

A young friend videos her medical journeys, hoping to help others who are on a similar journey to have less fear as they understand the medical processes.

A friend who lives with chronic pain and migraines volunteers to help the underprivileged find resources.

Joni Eareckson Tada spent most of her life in a wheel chair but has written numerous books, raises money for children in need, and has done many speaking engagements.

Some days we have to focus on our own well being.  We don't have a choice.  However, on the days that you can reach out to contribute to others, you will find amazing joy and purpose.  Who are the people with chronic health problems who have inspired you?  In what ways do you try to inspire others?

Why We Don't Talk about It

1.  People who suffer with chronic pain or chronic illness have worked so hard to embrace our new normal, that we truly believe we are "good" on the days that we are only partially disabled.  This is not a bad thing, but we forget sometimes that there are people who genuinely want to know the details of how we are doing.

-Our best day is probably never symptom free and is still somewhat disabling, if not significantly disabling.  We want to maintain a good attitude about that. We want to see it as a day for which to be thankful. These are the days we will tell you we are good because we truly see them as good days. 

-If we say we are  having a "bad day", it generally means that the symptoms are so bad that we cannot get out of bed.

-"I'm okay" or "Not my worst day, not my best day" means I am on a lot of meds and still have some of my symptoms as well as side effects of the meds but am able to do some of the things I want to do."

-If we reach out and ask for support, it has probably been days if not weeks and sometimes months of being so disabled that basic things are not getting done, things like laundry, the bills being sent out, grocery shopping, cooking, dishes, and sometimes even showering.  

2.  Yes, we have had the experience that many people flat out do not want to know how we are doing.  They change the subject, tell us it will get better, stop calling, etc. This is not the reason we do not talk about it though.  We learned a long time ago not to dwell on this because we do not have the physical energy to be bitter.  We also understand that the level of suffering we experience scares some people. They do not want to think that life could be that hard.

3.  We do not want to overwhelm our loved ones.  If someone hurts when you hurt, how do you possibly explain that you are never symptom free.  How do you explain that your best day is not even half as filled as that of your healthy peers.  How do you explain that the sound of running water gives you debilitating vertigo or that the feeling of water on your skin in the shower feels like electric shock? We do not want our loved ones to grieve over these things, so we open up about them less than one per cent of the time. It isn't being a martyr.  It's trying to normalize our lives and feel like we contribute in our relationships.

4.  We want accommodations but not pity. We will ask for help if we need it, and it is okay to offer, but do not be offended if we say no.  We are trying to maintain as much independence as possible.

When Doctors Don't Believe You

If the general public walks by me, they would not know that I have a disability unless I am using my cane that day.  However, some of my symptoms are measurable to doctors.  This is not true for many people who have chronic illness or chronic pain.  It is easy to give up advocating for your medical needs after numerous doctors have blown off your concerns. Once you give up advocating for your medical needs, you feel powerless, which only adds to the message your chronic symptoms already scream at you every day, "Don't you dare have dreams or goals for your life; you will never be able to cause the effects you want in your life."

So what does one do when given the message that they are a hypochondriac??? Believe it or not, the best thing to do is the exact opposite of what you think you should do.  Initially, patients with chronic pain or chronic illness keep advocating by going to different doctors, hoping they will find one who believes them.  Then when they don't find one, they stop going to the doctor altogether. 

1. Instead, keep going to the exact same primary doctor for years. Documentation is huge for eventually getting your needs met, and the more you go to the same doctor, the more documentation you have!  So do not be a super hero and tough it out all the time.  Your doctor needs to know how often your symptoms impair you. Eventually if you stay with a doctor, they will have enough documentation to "get it".
2. When you are at the doctor, be very clinical in your disclosure: "I am having the following symptoms at this frequency and intensity (mild to moderate intensity of pain throughout my back every morning for an hour or about 5 days a week for several hours a day".  Doctors like measurable data because insurance companies like measurable data.
3. Give the facts.  Trust your emotions with your loved ones or a counselor.  You deserve empathy, but unfortunately, you are more likely to be heard by your doctor if you are giving facts.
4. The World Health Organization, which creates the measures for symptoms, likes to see how symptoms impair functioning.  Insurance companies then use that data to create "best practices" for alleviating symptoms.  Do not be a  hero.  You are a hero every day.  Every day you push through symptoms in order to try to do some of the things you want to do.  Your doctor's appointment is the time to be honest about how your symptoms impair you so that there starts to be a documented paper trail. Try to state the impairments positively.  That is, state what you would like to see happen in your life that is not happening in the following areas.
   - Work:  Again, be specific.  "I would like to be able to work full time again. I would like to be able to work part time again, but after four hours, the pain makes it too hard to stay focused. While I am at work, I have had to use the following accommodations in order to do my job. I have missed x number of days of work the past six months due to symptoms.  I would like to reduce that to x number per six months".
   -Family: "My kids are frustrated that I cannot......".  "I would like to be able to have intercourse with my partner.  Right now these symptoms limit it to x times per year." These are measurable kinds of statements and are stated positively (focused on what you do want).
   -Social:  "I would like to be able to ride my bike again.  The last time I did, I had muscle cramps for three hours and could not sleep. I would like to get out with my friends, but the fatigue stops me."
   -Functioning Tasks of Daily Living:  These include personal care and household chores.  "I want to be able to shower without fear of falling.  I want to be able to grocery shop without severe pain. I want to be able to load the dishwasher without taking 3 breaks.  These are stated positively (the functioning you want back) and how your symptoms are currently limiting those tasks.
   
   When doctors hear that the reason you are seeking intervention medically is because you want more functioning, they are more likely to listen and to accommodate.  This may not be fair, but unfortunately, it is what is measurable, and it complies with insurance companies' expectations of the doctors. You deserve to be heard and to have empathy, but unfortunately, insurance companies do not measure a doctor's empathy.  They measure symptoms and impairment. Do not give up advocating for your needs.  Stay the course.   You will eventually get there.  Of course, do not stay with a provider who is sarcastic or demeaning, but eventually, you have to find a provider you are willing to keep whether they are empathic or not. You will eventually be heard if you stay the course, state the intensity and frequency of your symptoms, and positively state your wishes for how you would like your functioning to improve.
5. Continue with your primary for regular care, but ask to see a specialist once you have a diagnosis. Specialists are more likely to have knowledge of rare diseases and disorders and hence more likely to believe you.  Since they are specialized, they have more experience with how those symptoms impair functioning, so they also tend to be more empathic about these symptoms than primary doctors.
   
   It is really hard to wait for months and sometimes years of documentation when  you are finding yourself limited and wanting back the life you once had!  Stay the course.  Continue to document.  Continue to let your doctor(s) know how you are impaired and what your goals are. If you have had months of symptoms, and your doctor still is not listening, ask to see a specialist. 

Eliminating Stress, Part Two: Getting the Weeds of Stress out of Your Life

A year after my symptoms started, I was almost completely debilitated. My ear always felt like I was under water, and every day I was off balance to the point where walking was often not an option, much less driving or working.  Many days, for no explicable reason, I would drop to the floor with the room and my head spinning, and within seconds, I would start throwing up, not be able to get it to stop, and end up in the ER to get IV meds and get re-hydrated.

While sometimes, there was no logical explanation for the attack, other times, I could predict some triggers.  Stress would almost ALWAYS trigger an attack.  When your body reacts to stress in such a violent way that you cannot find the floor or the walls, and you end up in the ER with your electrolytes dropping, you learn very quickly to be aware of and to protect your thoughts, emotions, and physical reactions to the stress around you! You learn the self compassion of boundaries:  "My health is worth being mindful of what stress I allow into my body".  Because of my disease, it is not an option to not protect myself from stress.

If I break those steps down, they are as follows:

1. Be mindful of how my body is reacting to what is going on around me.
2. Take a deep breath and quickly process from head to toe if I am tense or relaxed.
3. Do not judge what is going on around me.  When we think something is terrible, we react physically.
4. Decide inside of my head if this is my problem or someone else's problem.
5. If it is someone else' problem, are they trying to make it my problem?
6. If they are trying to make it my problem, what boundaries do I need in order to protect myself from their stress?
7. I ask myself, "If they are asking me if I am willing to help them with their problem, do I have it to give?".  You might have to always tell someone, "Let me get back to you."  This buys you time to internally process whether or not you have it to give. You might have it in you to talk for an hour one day and not the next.
8. If I do not have it to give, what am I going to do to protect myself from external stress?
9. If it is not my problem, and I have it to give, I probably will.
10. If it is not my problem, and I do not have it to give, I will let people know that I would say yes if I could but I cannot.  The most important follow up here is to value yourself enough that you do not feel guilty for saying no.  You have a right to protect your health. You are not selfish for protecting your health.
11. If it is my problem, I take another deep breath to make sure the problem solving stage does not get too stressful in and of itself.
12. Then I decide, is this stresser one that I can change, or one that will remain constant?
13. If it will go away on its own, I do not need to worry about it.
14. If I can change it, then I write out 2 to 3 potential solutions and the pros and cons of each.
15. If it remains constant, can I blow it off?  Can I use distraction and self soothing to get my mind off of it?
16. If it is not going to go away, and I am not able to blow it off, then I have to decide, how much is this affecting my body?  Am I willing to allow that consequence to my body?  If not, then the stresser needs to go.  Sometimes, that is a job, sometimes, it is a change of atmosphere, sometimes it is a relationship or how much time you spend with that person. Sometimes, for me, it is chocolate.
17. Some stress is worth it, but I get to decide.  I get to decide if the payoff is worth it to me.

These may sound harsh, but you have to eventually come to the conclusion that your health is worth protecting.  You are worth protecting. Your health gets to be more powerful of a value than your job or than other people's needs.  Proverbs 14:30 NIV says, "A cheerful heart brings life to the bones....".  Proverbs 15:30 NIV says, "A cheerful look brings joy to the heart, and good news gives health to the bones.".  Fill your mind with good news, with things that make you cheerful.  Stay away from things that rob you of peace and joy. 

Reference: New International Version Bible.

Self Care/Self Care/Self Care

Ever have one of those people in your lives who every time they talk, you feel like God is talking through them!  Well, I had one of those today.  Thank you, friend, if you are reading this.

So here it is: We live in a rushed culture that values, above all else, productivity. However, what really brings joy and meaning to life is just being!  BUT, how do you just be when you are agonizing in pain, much less, how do you take on one more step???

Take a few moments to meditate.  Are you supposed to take on a new step, or are you supposed to rest?  You are the only person who can answer that, although, I have had some times during meditative prayer where I sensed God telling me to rest. Sometimes we are just supposed to rest and do nothing.  Sometimes, the thing we are supposed to do is to simply follow the doctor's orders, and some days, that is physically more exhausting than any eight hour job.  Whether we are taking on a new step, like reducing one cup of coffee a day, trying a new prescription, or whether we are learning to rest and be (not do), we must do those with self compassion.

Self Compassion says: I have value.  I do not have to be perfect.  I am working really hard. I am lovable, capable, and worthwhile just the way I am. As a Christian, I believe that all life has value because God created it in His image.  Humanists believe that all life has value because we are human.  Some groups do not believe that all humans have innate and equal value.  I do not think any of us would survive chronic illness though if we did not believe that we have immense value regardless of how much we do or produce.

Listen to your body, listen to your spirit.  Listen to your doctor.  Listen to your heart. With everything you do, treat yourself the way that God would treat you.  Treat yourself as good as you would treat others.

Find the list of things that bring you comfort.  Embrace those things daily.  Speak loving truth to yourself.

I have 3 stuffed turtles in my bedroom.  They remind me daily that I am not supposed to do things quickly.  I am supposed to be in turtle mode.  I am a great turtle, and it is okay to be a turtle.  I embrace my inner turtle and remind myself not to judge my inner turtle.

So, with any tips that I throw out there, check with your body, with God, and with your doctor, and embrace your inner turtle.  It is your turtle that allows you to climb mountains, whether that mountain is a full time job or working on your physical therapy or trying a new prescription.  When you live with chronic illness, sometimes just getting through the pain until pain meds kick in is a mountain. Love your body and your spirit enough to only do what is healthy for you to do. Embrace your inner turtle with lots of self compassion.

To my friends who are not able to do much of the things you would like to do, please know, you are our heroes!  I am awed that those who are the most disabled are often those who are the most compassionate, encouraging, inspiring, and truth speaking. You have a very powerful influence and contribution that you make daily! Specific people come to mind.  They are people like my friend who was so helpful in her honesty today or my cousin who frequently inspires others with her facebook posts.  She's open and honest about her pain but inspires others with her transparency of the good and bad things in her life.  They are people who speak truth to us in love and people who live out authenticity.  Those moments inspire the rest of us to dare to be transparent and to admit we need others.  For me, they help me admit that I need God, and they give me permission to be self compassionate.  So, thank you friends and family who are transparent with your needs and symptoms.

Eliminating Stress Part 1

For the average, healthy person, a little bit of stress can be energizing and motivating.  It can drive them to get things done.  We call this eustress. However, for someone with chronic health or chronic pain, even a minimal amount of stress can wreak havoc on your body! In order to maximize health and the ability to live the fullest life you can, you must learn to minimize, if not eliminate, stress!

Here are some tips that I have found helpful:

1. Make sleep a very high priority. 
   -Unless they have a neurological condition, everyone's body is wired for a daily rhythm.  Make sure you go to bed at the same time every night.  Get up at the same time every morning.  Being inconsistent with that rhythm makes your brain confused and makes it harder to sleep.
   -Create an environment in your bedroom that is peaceful and relaxing. 
   -Do not exercise in the evening. 
   -If you are an extrovert, do not talk on the phone or be in a group of people in the evening.
   -Do not have caffeine in the afternoon or evening.
   -Do not watch intense television in the evening. 
   -Practice meditation and relaxation before bed, whether that is reading or prayer or a meditation app.
   -If you cannot get to sleep in thirty minutes, then get up and do something peaceful, such as reading, but do not do chores or anything very physical.
   -If you consistently have a hard time getting to sleep or staying asleep, talk with your doctor.
   -Try a new pillow.
   -Make sure the temperature is comfortable for sleeping.  Most people sleep better when the temperature is slightly cooler than what they have it during the day.
   -Try sleeping with white noise: a fan or an app playing of the ocean or of nature.
   -Do not problem solve late at night.  If you have a conflict, agree to discuss it the next day when you both are more alert and rested.
   -Do creative activities at night.  This will help decrease the racing thoughts.
   -Try counting your breaths.  It is impossible to count and have your thoughts race at the same time.
   -Make sure you are practicing deep breathing and relaxation several times a day so that you have less pain at night than you otherwise would.
   -Reduce screen time.  Did you know that blue light decreases your melatonin.  Meltaonin is the chemical in your brain that helps you sleep.
2. Stay away from caffeine and other stimulants
   -Stimulants raise anxiety, which is the same physical reaction in the body as stress. Stay away from coffee, tea, chocolate, soda, and any other stimulants.
3. Eat nutritiously
   -Any time we load up on carbs, even if we do not have diabetes, our blood sugar rises quickly and then crashes.  This adds stress to the body.  If you are going to eat carbohydrates (bread, pasta, rice, potatoes, fruit, treats), make sure you have some protein (meat, eggs, dairy, dried beans, lentils, nuts, seeds) with it. Protein helps to stabilize blood sugar and food cravings.
   -Although  you may crave comfort foods when you are in pain, your body desperately needs vitamins and nutrients to stay as strong as it can. Seek comfort in other ways and keep your diet full of fruits and vegetables and low on sugar.
4. Exercise
   -Do you know that studies show that exercise sometimes has more effect on the body than medicine.  Many studies show that exercise is more effective with depression and anxiety than medication.  This does not mean that you should discontinue a prescription, but by all means, if you can exercise, do. It keeps your body flexible and healthy.  It creates positive hormones in the body.  Nothing is more effective for reducing stress than exercise!!!
   -Figure out how much you can walk in a day without paying for it later.
   -Try swimming.  It is a very low impact exercise but can have profound health benefits, as well as pain reduction benefits.
   -Stretch daily.
   -If you find exercise boring, find a podcast that you enjoy hearing while you exercise.  Better yet, exercise with a friend.
   -Do exercises that strengthen your core.  This helps reduce pain. Ask a trainer or a physical therapist what exercises you can do to strengthen your core.
   -Remember that even if you cannot exercise daily, it is still important to do so on the days that you can.
   
   In tomorrow's post, I will discuss the importance of identifying stressful subconscious messages we give ourselves and how to control those. I will also discuss the importance of setting healthy boundaries in relationships so that relationships do not cause you stress, as well as reducing your obligations. 
   
   For now, look at at least one of the options above and decide how you can improve your life in this area.  Write out how you are going to do that, and tell someone.  Now literally write in your daily calendar.  Taking those steps will motivate you to stick with  it.  Maybe even set an alarm every day to remind you of your new commitment.  

Dealing with Discrimination

If you have a disability, you will face discrimination at some point in time. Knowing your rights and being able to communicate them productively is important in these situations.

Work Issues

• Make sure you know and understand the Americans with Disabilities Act. 
• Some metropolitan areas have a non profit organization you can call to ask specific job related questions as it relates to the Americans with Disabilities Act.  Here is a website with a list of resources in Minnesota.  https://www.blr.com/HR-Employment/Discrimination/Disabilities-ADA-in-Minnesota.
• Here is the contact information for the Minnesota Council on Disability.  They are a great resource if you have specific questions.  https://www.disability.state.mn.us/contact-us/
• Use wisdom and boundaries.  You do not have to tell your employer that you have a disability unless you need and want accommodations. How much you share is up to you and your individual needs.

Social Issues

• Be committed to the people in your life who treat you with respect. It is easy to take them for granted when you are suffering.
• Remember to set boundaries.  You do not have to spend time with people who treat you disrespectfully. You also do not owe anyone an explanation.  If you are spending time with people who consistently do not get it, stop expecting them to change and start changing yourself by not revealing your emotional needs. Your value is not dependent on others "getting it", and if they choose to not have a close relationship with you, that is their loss. You can tell them you are not well enough to socialize right now, but you do not need to defend yourself or explain your needs.
• Communicate assertively.  "I need.......would you be willing to.......?"  It is okay for others to not help you, but if they treat you disrespectfully, it is time to set consequences.  The most logical consequence is simply spending less time with that person.  Some of my rules of thumb about my time and energy are:  -I will not spend much time with people who are not mutually supportive.  -If someone expects me to give time or energy in a way that can escalate my symptoms, I get to decide if the answer is yes.  I will not give if it means taking away from my children, if it means I get so sick that I have to take time off from work. or if it means I am likely to end up in the hospital. There are times you will choose to let your symptoms escalate because you love that person.  We choose at times to spend time with extended family, knowing that travel will escalate my symptoms.  That is okay, but own your choice.  Do not feel sorry for yourself, but have back up plans in place so that whatever your line is does not get crossed.  I make sure I have a quiet place to relax so that I do my best to avoid the ER. I make sure I have a day when I get home to relax and do nothing.

Family

• Most of what I wrote in the social section can apply to family.  However, with immediate family members (your partner and children), I think you can be even bolder.  About once a year my children will joke about me having selective hearing.  My response is, "That makes me feel disrespected and unwanted.  I need to belong.  Please do not joke about my disability."
• With your partner and children it is also easier to ask for help.  "I need help.  Would you be willing to.....?"  
• Acknowledge gratitude to your family when they do help or when they make sacrifices for your disability.  Disability does not just affect the person with chronic symptoms. It affects the entire family.  You do not need to feel guilty for that, but everyone needs to feel appreciated and acknowledged.  Let your family know that you appreciate them and that you see their sacrifices.
• Let family know what you want.  Do not leave them guessing.  For example, you may want to tell extended family, "I know we often have to say no, but we love that you keep inviting us despite my/my partner's disability.  Continuing to invite us helps us feel like we belong." Recently, my family went to Disneyland.  I told them that the one thing I wanted was a picture of everyone together and a few other pictures throughout the day and that that helped me enjoy the experience even though I could not go.

I am sure you have at times faced discrimination.  At such times, you unfortunately have to decide if you have the physical stamina and if the relationship is worth confrontation.  What else have you found effective in these scenarios?

Embrace Minimalism

It is plain and simple:  less stuff equals less stress, which equals less pain.  If you have chronic pain or chronic fatigue, you want to spend quality time with people and on meaningful experiences.  You do not want to spend your precious energy cleaning up stuff you have accumulated!

It is easy to spend money when you have chronic pain because subconsciously we are looking for comfort.  Comfort is a valid need.  However, in the long run, stuff will actually bring you more stress and less comfort.  Look for comfort that is more long lasting: coffee with a friend, sitting by the beach, playing with your children or your nieces and nephews, finding ways to contribute to your community.  These activities bring long lasting joy and meaning.

So what are some specific ways to minimalize? That depends on your individual needs and the needs of your family.  Here are some suggestions:

1.  Imagine if each person in  your home only had ten outfits!  That is only ten outfits per person that can go in the laundry! I guarantee you are only wearing about 20% of what you own anyways.
2.  I predominantly cook from scratch, and I use the same four pots/pans all the time, one of which is my crock pot.  Get rid of the stuff in your kitchen you do not need. Less stuff equals more space, which means you do not have to go digging for something.  It also means you are not climbing or bending for something you use regularly.  Save that precious energy! Two plates per person is plenty.  Really, how often do you have guests come where you are serving off of your plates and need more than your eight?  Look at your kitchen gadgets.  Do you really use all of them.  Last night, I used my hand mixer for the first time in years!  Years!  My stand mixer would have worked just fine, and that is one I use regularly.  I just did not want to drag it out.  Now my mind is thinking about what I could do with the space in the drawer where the hand mixer is kept.
3.  Get rid of unused furniture, books, magazines, office supplies you are not using.
4.  Downsize your living space!  Find the smallest home you need! Imagine cleaning one floor or 1000 square feet instead of 2500! Also, what if less square feet meant you could afford a pet?  Now that is a daily experience that brings most people lasting comfort!
5.  I know the kids' old toys can be sentimental, but think of it this way, if  you divide your mortgage by the square feet in your house or your rent by the square feet, that is what it is costing you per square foot.  Do you really want to spend that money on storage? Take a picture of sentimental items, put them online where you have access, and get rid of them.
6.  Throw away junk mail before you even enter your home.  Have the recycling bin nearby your door or your garage so that stuff does not even come into the house.

Yes, I know we all have our gadgets that help us with our disability.  I am not getting rid of my cane even though I only need it about ten times a year.  Look through your living space and get rid of the things you do not need, and do not rationalize about it.  Accommodations, yes, comfort items, that is a different story.  Make sure they add significant value to your life if you are going to pay to have them in your home.  Remember, you are not just paying for the initial purchase; you are paying for the storage of that item in the rent or mortgage you pay for the space to store the item. You are also paying with the energy it costs your body to take care of the item (dusting, picking up, washing, etc.). I want to spend that energy with my family, friends, and meaningful experiences that bring me joy.

Dealing With People Who Don't Get It.

My first rule of thumb when it comes to any interaction with others is to focus on the good in people.  We all deserve that grace.

My second rule is communication, and we have talked about that.  The simple phrase, "I  need.....would you be willing to.......?" goes a very long way and is a respectful request that gives others the message that if they say no, they are not bad.

However, there are those people who seem like they just NEVER get it. What do you do when you have tried repeatedly and people either still do not get it or do not care?

BOUNDARIES! You do not have to even state the boundaries; you simply spend less time with those people.  Think of the metaphor of putting a dead bolt on your front door.  Your heart (your emotions, needs, values, thoughts, opinions, goals, relationships, etc.) are what are inside your emotional house.  Put a dead bolt on the door of your heart, around your emotional house.  You get to decide who comes in that door, who does not, and for how long people are allowed in your emotional house.  It is your responsibility to protect your emotions and your needs. We all know that if we do not, the emotional strain will eventually take away physical energy from our bodies.

Here are some examples of boundaries in this area:

• Talk:  only talk about your symptoms and your life to people who have shown that they care.
• Time: it is okay to spend time with people who do not get it, but do not spend the majority of your time with them.  Ask yourself, "Do I have it to give?". Spend the majority of your time with people who are able to express their care for you in ways that are helpful and who let you express your care for them.
• Conversation: redirect the conversation.  If someone is opening a topic that relates to your health in any way, and you do not feel comfortable, you can simply gives a short yes or no and then ask them a question about their life or transition to a topic that you know is a safe topic between you. 
• Energy: do not spend your energy waiting for others to change or to suddenly get it.  If they have spent years not getting it, they are not likely to change, and you do not have the energy to waste.
• Space: have an out. If you are traveling and staying with someone who has a history of showing a lack of empathy around your health, get a hotel instead of staying with them.  It does not have to be a sore subject; it can simply be, "I enjoy the quiet of the hotel, and the kids like to get in the pool at the hotel, or the hot tub at the pool eases my symptoms".  All of those are likely very true and make for a better travel experience for you. Do not rely on someone to drive you if they have a history of hurting your feelings.  This means you are then stuck with them in a confined space.  Instead, drive yourself, get a cab, take a bus, etc.
• Trust: Your trust is valuable.  It needs to be earned.  Do lots of self care before and after spending time with someone who has shown a pattern of not earning your trust when it comes to your health, and do not blindly give away your trust. 
• Peace: put a boundary on yourself.  A supervisor I once had said that she would not let people rob her of her peace.  You are responsible for not choosing to spend emotional time and energy on negativity.  If someone hurts you, it is okay to be sad, but love yourself enough that you recognize that their lack of empathy is their problem, not yours. You are valuable regardless of whether or not others love you enough to show care or empathy. In the end, it does not matter what they think.  It is their loss.  Do not spend much of your precious limited energy on it.

Your needs, emotions, goals, values, relationships, and all that is meaningful to you are precious.  You do not owe it to anyone to let them in the front door of your heart.  Assume the best in others, communicate your needs.  If that does not work, then you are responsible for what you do to protect your emotional and physical energy.  Set boundaries.

Marriage and Chronic Health Issues: Part Three

We've talked about the importance of giving your partner space to grieve and the importance of specific communication.  Here are a few more important factors for making marriage successful and fulfilling when one of you has chronic symptoms:

1.  Plan fun. Yes, I know that the word "plan" seems antithetical to someone who has unpredictable symptoms.  However, if you never plan fun and only stay in survival mode, you will not be happy and certainly not as happy as you can be.  It is far better to have to cancel or reschedule plans than to not make them at all. Be willing to give up some of your physical strength for fun with your partner.  Your partner, of all people, will understand when you have to reschedule.

• Plan fifteen to thirty minutes a day talking with your partner about non task oriented things.
• Plan one fun marriage event a week. It could be dinner at a restaurant, going to a movie, walking around a beautiful lake as one pushes the other in a wheelchair, playing cards together, etc.  However, if you do not put this in your calendar, it is unlikely that it will happen, partly because when you live with chronic illness, you are always behind on chores, and partly because when you live with chronic illness, the family is always in survival mode.  Do not let that stop you.  Plan, plan, plan to spend quality recreational time with you partner! Be flexible, but put it in your calendar, literally in your digital or paper calendar. You would have done this when you were dating; make it a priority now as well.
• Take pictures of special times together.  Brain fog is a common symptom of chronic health issues.  Also, research says that if you do not stop and focus on a happy event for at least 15 seconds, it will not go into long term memory.  Unfortunately, negative events do not take that long to move into long term memory.  Taking pictures will not only force you to slow down long enough to put it in long term  memory, it will also help you look back and remember how special that time was.
• Get away once a year.  It may be a hotel for a weekend or sending the kids to their grandparents, but make sure you get a weekend a year with just the two of you.
• Make a list of leisure activities that you can sometimes do so that you have it to fall back on when you cannot think of one.
• Even if it does not sound fun at the time, do a leisure activity anyways.

2.  Don't give up your sex life.  This is not the place for detailed mechanical information, but if intercourse is not an option, find other ways to meet each other's needs.  There are lots of books available on this topic.  Physical intimacy is important in a relationship. Find the time of day that you have the most energy.  Make sure that the day before and day after you can rest. Create more time than you think you need. Be affectionate throughout every day.  You may have to be creative because affection can actually be painful if you have chronic pain.  Explore non sexual modes of affection that do not cause you pain. You would at times take a pain med to be able to do your job or tasks that have to get done.  Be willing to take one, if necessary, for the days you plan on having physical intimacy.

3.  Once or twice a year, sit down together and write out new goals for the future. It is ridiculously easy to quit dreaming when you have chronic symptoms.  Dreaming about good things in the future and setting future goals are important for maximizing joy, unity, and intimacy in a relationship.  I know it seems like there is no point, but there are still dreams you can do together.  Make this a priority. Get creative.  Maybe the dream is to start one date morning a week, yes, I said morning.  Maybe the goal is to visit a nearby beach, or maybe it is bigger.  Maybe the dream is to save for a special vacation.  Start prioritizing a dream list. If you are religious, put these items on your prayer list or meditation list. Pray about them together.

4.  Cut corners for functional tasks so there is more time for relationships.  Do not feel guilty using paper plates and cups or plastic utensils.  If doing this two nights a week allows you to have an extra thirty minutes that week as a couple, then by all means, do that.  I know, sometimes it just means that there are not so many dirty dishes sitting around the kitchen.  It may not mean that you actually get more time together, but try to cut extra corners where you can.  Cook in a crock pot. Find easy recipes. Use cleaning materials that do not require scrubbing.  Barter room and board for help around the house. Barter other talents for help around the house.  Order groceries online. Have them delivered.  If you qualify, order meals to your door; sometimes insurance will pay for meals that are precooked.  Automate as many bills as you can.  Get your children involved in helping with as many chores as they can. Pay a teen to come do some chores.  Consider downsizing your space.  We recently stayed in a condo with eight people.  I was pleasantly shocked to realize I did not need more space than that to function quite comfortably!

5.  Pray or meditate together. I already mentioned praying about your goals and dreams.  Pray as well for your children, your concerns, your friends, your political concerns, etc.  We have found that nothing brings a couple closer than praying together.

6.  Choose minimalism as a way of life; do not try to "keep up with the Jones's". I have been shocked at how much peace I have when I give this up!  You can find brand new clothes at a thrift store, and shopping at a small thrift store causes me far less pain and vertigo than in a mall.  Having extra cash flow by not making purchases relieves the financial stress that medical expenses can cause, and imagine only having to organize ten outfits per person in the household! 

Downsizing your space makes for less clean-up time and less utility cost.  Consider a smaller home.  Living close to your or your partner's job significantly lowers transportation cost, sometimes by hundreds of dollars a month.  Grocery shop sales only.  Know what the rock bottom prices for food are in your area, and buy enough to last you until the next sale (usually six to eight weeks).  Go to the store with a list. 

Having margin in your finances makes for a much more peaceful relationship.  Did you know that money is the number one topic that causes fights in marriage!

7.  Express gratitude to each other every day! It is hard to not feel close to someone who appreciates you, and there is much to be appreciated in a family where there is a disability.  Thank your disabled partner for how hard they work to function.  Let them know you see that they are suffering.  Thank your healthy partner for how hard they work to compensate for your loss of functioning.  Likely, they are very tired.

8.  Verbalize together how your disability has brought you closer as a couple.  Not every couple has that gift.  We would all trade it if we could, but having a disability can bring you closer as a couple.

None of us have these all together. I know I lack in the "planning fun" category.  What do you find yourself needing to work on together.  What tips would you add to this list?

Marriage and Chronic Health: Part Two

Yesterday I talked about the importance of giving your partner room to grieve.  Before elaborating on the rest of the list at the bottom of that article, I want to add the nuances of communication that may be necessary when one partner has a chronic health or chronic pain issue.

Chronic pain and chronic illness vary widely from day to day and even from moment to moment.  This can make it very confusing for your partner to know what level of intimacy and functioning can be reached that day.  I've talked before about the importance of identifying and communicating your needs as well as listening to your partner's needs.  Here are a few key phrases that have helped us in our marriage.  You can create your own or use these; the important thing is that you both verbalize what those phrases mean to you.

-"I'm not okay."  For me, this means, my symptoms are so bad that I either need medications or the emergency room and am not able to do that myself.  It is our Urgent Need communication, meaning the need is so urgent that it could become an emergency quickly or already is an emergency.

-"Would you be willing to...".  As it relates to health, for us this means I am not well and would like help, but it is not urgent.

- Rating your symptoms.  "On a scale of 1 to 10, I am at a ...".  This helps your partner know where you are on Maslow's hierarchy.  If your symptoms are 1-4 in severity, you likely are able to focus on intimacy needs.  If they are 5-7, you might be able to focus on safety and functional needs, such as paying bills, doing the dishes, grocery shopping.  At 8-10, I am usually in bed and might be able to read together or watch a movie together.

-Rating how strongly you feel about something. This is one that can be used whether you are healthy or unhealthy.  If one partner is more expressive than the other, it can be easy to misread how strongly the other feels about something.  By simply stating, "On a scale of 1 to 10, I am at a ... ", helps your partner know how to gauge the importance of the topic.

What are some key phrases you have found that help communication in your relationship so that your partner does not have to guess at the level of intimacy or functioning that can be reached that day?

Tomorrow, we will follow up on the rest of the list:
- Try your best to move beyond survival mode/plan fun.
-  Don't give up your sex life.
-  Write out new goals for the future.

-  Cut corners with functional tasks so there is more time for relationships.
-  Pray or meditate together.
-  Choose minimalism as a way of life/don't try to keep up with the Jones.
-  Express gratitude to each other.

Marriage and Chronic Health Issues

This is not a topic that can be covered in  one post, so I will do my best to list some key points and elaborate on them one at a time. Here are some pointers that have helped us.

1.  Give your partner room to grieve. Your partner may not always do or say the right thing or the compassionate thing.  It is important to remember that he or she is grieving too.  It is far harder to watch someone you love suffer than it is to suffer yourself.  Be patient with them in this process.  Remember the grieving stages and give them space to grieve in their own way.

If you feel attacked in their grieving process, the following responses can be helpful:  "I know it is hard to believe this is happening."  "I remember wishing there were something that could make this all go away.  Everyone is trying so hard to get me to try different things. I wish it would go away too."  "It is okay that you are angry.  You have lost the person with whom you used to do recreational things; I just need to know that you are not angry with me but with the symptoms."  "Are you sad we cannot ........?" If this does not work, set a boundary and be very clear: "I understand that you are grieving; it is not okay to blame me or to take it out on me."

Validate your partner's feelings and needs.  They matter just as much as yours do.  Remember that anger is a normal part of grieving.  It is okay to set boundaries, to let them know it is not okay to take that anger out on you, but being angry in an of itself simply means they love you and are grieving. Acknowledge that it is hard on them to see you suffer.  Show appreciation for all the extra effort they have to do as they compensate for the family not functioning at the same level.  A simple "Thank you for the time you spent on grocery shopping today" goes a very long way in keeping a relationship strong. Remember, they are very tired and need support as well.

Once they are in the acceptance stage, then it is okay to problem solve:  "Let's try some recreational activities that do not require as much physical stamina from me. How about ........?"    Yes, you as a family WILL come to the point where you find your new normal.  Have faith that stability will come, but in that journey, be patient with your loved one. Empathy and patience go a very long way in a relationship.

We have found the following activities draw us closer and add fun to our relationship: reading together, watching movies together, trying new restaurants, getting a cane or a wheelchair so we can visit places we have not been, walking, finding silly goals like seeing who can make the cheapest but healthiest meal, listening to podcasts together, playing board games or cards, and most importantly, sharing our feelings.

Feelings, that is the hardest one, right?  If you and your partner are going to support each other, you as the disabled partner are going to have to eliminate the belief that you are defective as a person.  You are NOT the problem.  The symptoms are the problem.  Eventually, the symptoms are no longer even the problem.  We recently traveled, and we recognized how relaxed and laid back we were.  My husband and I were not stressed about getting to the next sight seeing event because the goal was to enjoy each other's company and the company of those we were visiting.  We had hit the acceptance stage where we could actually find the good that comes out of my chronic health issues.  No one wants to be stressed on vacation, but most people are.  My health has taught our marriage to live in the moment and to focus on relationships. What a blessing my illness was on that trip!

Understand your partner's grief by communicating empathy and boundaries, giving your partner patience, and finding new leisure activities you can both enjoy together.  This is in my opinion the most important part of having a successful intimate relationship when you live with chronic illness.

Other tips that help that we will elaborate on in the future are:

2.  Try your best to move beyond survival mode/plan fun.
3.  Don't give up your sex life.
4.  Write out new goals for the future.
5.  Cut corners with functional tasks so there is more time for relationships.
6.  Pray or meditate together.
7.  Choose minimalism as a way of life/don't try to keep up with the Jones.
8.  Express gratitude to each other.

Traveling with Chronic Illness

My family and I enjoyed the beaches and tourist sites of Los Angeles this past week.  Here are my tips for ensuring optimal travel enjoyment.

1.  Travel light.  Each of my family members took one small duffel bag and a backpack.  We did not fill them because we wanted room for souvenirs.  This way we did not have to check any luggage, which saved us a lot of time and energy.  We also were not lifting anything heavy.  That is a huge win if you have chronic pain!  Also, if you have to pay for coin operated laundry, it is far cheaper than paying to check a bag. Next time, we will pack even lighter.  Know too that most rental units come with electronic appliances such as hair dryers and irons and even washing machines and dryers.  This trip, we each packed about four outfits for eight days, wore one pair of comfortable shoes, and packed one pair of sandals.  That was more than enough.  Do not worry too much about packing for weather changes.  You are likely going to buy souvenirs anyways, so if you need it, purchase a sweatshirt when you get there.

2.  Do not be embarrassed to ask for a wheel chair at the airport. We found they were extremely accommodating.  I did not have to worry about falling in the airport.  There was room to hang a bag from the back of the chair.  It saved my energy for later. Having a wheel chair through the airport also meant we were the first to get on the plane.  This meant I did not have to stand longer than I needed, nor did I have to deal with the extra noise of so many people around me.  Noise is a trigger for my vertigo.

3.  Keep your touring expectations reasonable.  There were several days I was unable to go out and tour with my immediate family.  They went to Disney Land one day.  There was no way I was going to pay for something I knew would give me vertigo.  However, when they would text me pictures of what they were doing, I was able to see my children's joy, and this made me feel included.  Also, I relaxed at our condo with my mom and my baby niece.  There is not much that brings me more joy than holding a newborn! Had I expected to be able to go to all the sites my family was attending, I would have been very disappointed.  This way, on the days I could go touring, it was an added bonus! Make rest one of your goals.  This will encourage  you to live in the moment and just enjoy your vacation. One of my favorite memories is sitting early in the morning on our patio, reading something inspirational and writing.

4.  Check the accommodations ahead of time.  Did you know beaches have wheel chairs with giant wheels that can roll through the sand!!!  On many beaches, they are free! I did not happen to need them the two days I was able to go to the beach, but it was reassuring to know that if I had wanted one, they were available.

5.  Have realistic expectations about traffic.  We knew L.A. would have crazy traffic, so were not frustrated when we were at a dead stop for 15 minutes at 11:00 p.m. on a sixteen lane highway.  So what if we spent a little extra time in the car; we were on vacation; we did not have to be anywhere in a rush.

6.  Not only did it save money to rent a condo where we could cook instead of eating at restaurants all week, we ate much healthier than if we had eaten out every day. Healthy eating meant less physical symptoms, which meant a more pleasurable vacation.

7.  Allow for a couple days of downtime when you get home.  The time change can be especially hard on someone with chronic pain or chronic symptoms as can travel in general.  Give yourself extra time to recuperate.

8.  Do not be afraid to let service people know what you need.  I asked the flight attendant if it was an option to get a cup of water to take a pill before we started ascending.  She was very kind about it.

9.  Focus on frequently telling your family how much you appreciate them and enjoy them.  Focus too on asking them what their favorite event was from the day.  This focus on the positive keeps everyone's attitudes more pleasant.  It is easy to get crabby when people are tired.  It is also easy to get crabby when the week becomes anticlimactic.  Keeping the focus on the positive events from the day and complimenting each other makes the vacation much more enjoyable and keeps relationships positive.

10.  Take an Uber to and from the airport.  In MSP, there is a separate place for Uber pick ups.  It was much less rushed at this pick up location, which meant far less stress loading and unloading.