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.

Parenting When You Have Chronic Illness

When you do not feel good, it is so hard to be the parent you want to be!  You can find yourself speaking in a short tone or getting demanding with the kids.  It is also really hard to have the energy to teach them the life skills they need. Although I have been intentional about this for several years, in all transparency, it is still something I am learning.  Here is what has helped me so far in my journey.

1.  Mindfulness: Be aware that when you are not being the parent you typically are or feel suddenly impatient and crabby with them, it is probably a good sign that you have been ignoring your physical symptoms for too long. Check in with your body throughout the day, but especially if you start to feel crabby or withdrawn.  It is such an unconscious habit to ignore our symptoms until we are over the edge.  We use distraction to cope, which is good.  This helps us get more done and live life to the fullest we think we can.  The problem is that too much distraction, too much ignoring our physical symptoms, leads to ignoring our physical, legitimate NEEDS.  Nobody is kind and gentle when their needs are being ignored for too long.  So, first and foremost, pay attention throughout the day to what your body is needing.  Especially stop and pay attention when  you feel crabby.  That is probably a sign that you need to immediately take care of your physical needs.  For me that is a sign that I need to probably take my medications and get some where quiet for a while.

2.  Communicate your needs. Communication does not mean that you are asking your children to meet your needs.  It simply gives them the message that they are not the problem; your symptoms are. At this point, I will often say, "I am feeling tired and crabby from my ear screaming at me and from pain. I am going to go take my medications and lie down for a few minutes.  You are welcome to come talk to me in ten minutes."  Once the medications kick in, I'm usually able to re-group.  Perhaps, it is taking a hot bath or going to get a massage or doing some relaxation exercises/deep breathing and muscle relaxation.  Figure out what you need, and communicate it to your children.

If your child is two years or older, you can still communicate what you need.  "Mommy/Daddy is not feeling well.  I am going to sit down for a little bit. You may play puzzles or toys next to me."

3. Have indoor options that channel their physical energy. Small children need lots of large motor movement.  You cannot leave small children alone. Here are some things we did with ours when they were younger.  We had a child proof gym in our basement: zip line, swings hanging from the ceiling, sand box on top of a tarp, indoor climber slide, weighted bean bags, tunnels to crawl through, mini trampoline, chalkboard paint on the wall.  This kept them occupied and bought me time to sit. I would also put towels down by the kitchen sink, pull up a couple chairs so there was safety from falling, and let them play in the water in the kitchen sink.  I would stay nearby and was verbally available but not have to physically interact as much.

4.  With older children, have quiet activities you can do together while you are relaxing. Reading, talking, watching a movie, playing a board game, coloring, listening to music, these are all activities you can typically do while lying down or sitting.

5.  Barter for help with the kids. Find a neighbor you trust.  Offer to barter watching each other's kids, or ask a family member to barter watching the kids, and maybe later that week, you make them a meal. I no longer drive highways, so I will help my sister with her kids once a week (she is still there, but we work together with the kids), and she drives me to work about once a week.

6.  Pay a mother's helper to come help with chores or keep an eye on the kids a few hours a week.

7.  Do not be afraid to apologize:  NOT for being sick but if you have been rude or short with the kids, apologize for that. Tell them, "I am sorry I spoke to you like that.  You did not deserve that.  The truth is that my my migraine/pain/x symptom is flaring up, and I am crabby about that.  Kids need to know that they are not the problem.

8.  Life skills.  I do not know about you, but this is the easiest one for me to neglect, teaching my kids life skills.  Frankly, I am too tired and in too much pain to care if their rooms are a disaster or to ensure they have taken their plate to the kitchen, rinsed it, and put it in the dishwasher. I think the main point here is to be as consistent as you can.  We did teach our daughter to do laundry, and for the most part, she does a couple loads a week.  We also have asked our son to load the dishwasher pretty regularly.  Enlist your spouse.  Ask them to teach the skills you can not teach.  Some teachable moments can happen while you are resting.  I sat in bed one day and showed our son our expenses and income so he understood budgeting and why we can not give him every Lego set he wanted.  When he turned twelve, we also started giving him some money every month for him to budget for social events.  This does not take much time, but gives him a life skill he will need.  The importance of teaching life skills is an area though where we are still learning.  For me, it is so easy to not care about making sure the house is in order or that they have cleaned out their stuff from the car or gotten their home work done.

9.  To some extent, your child will have other life skills their peers do not have. Our oldest, who is now seventeen, has had to make her own medical appointments since she was sixteen, get there on her own, follow up with doctor's instructions, and she has been quite successful.  She filled out all her college applications and FAFSA paperwork.  All we had to do was sign. She researched jobs and applied without asking for our help.  She manages her own checking account. So, although, she has not learned to keep her room clean or make at least ten meals, there are some life skills where she excels simply because I am not available to do those things for her.

10. Learn to let some things go. I know this is not environmentally sound, but sometimes it is in the family's best interest to use paper plates for a few days so the dishes do not pile up while you are in a flare-up.  I know, they pile up anyways, but when you are especially in a flare-up, give yourself this extra buffer.  Our rule: there needs to be enough clean laundry that we can get through the week, food in the fridge, and either enough clean dishes to get us through the day or paper plates, and the bills need to get sent out.  Yes, I have been in that place where these things could not get done because frankly I was unable to walk straight for months on end.  Ask for help.  Many people said no or did not follow up, but many said yes. People picked up our laundry, did it at their home, and brought it back.  Family watched the baby when I could not.  Church friends brought meals.  Call your insurance and see if it pays for a p.c.a.  or for prepared meals to be brought to you.  Downsize your home if it is an option. I am glad that when I was the most sick, we lived in a small two bedroom house.  In the mean time, it really does not matter if the house is not in top shape.  It matters that everyone's physical, and hopefully emotional, needs are getting met.

11.  Do not take it personally when your child needs to express their feelings about your health. Children need to know it is okay to be sad or angry that they cannot do something due to your symptoms.  You are not bad, but all of their feelings are valid, and we do not want to give them the message that they need to stuff those feelings. Also, answer their questions about  your health.  Lying and saying  you are fine does not give them peace; it only raises their anxiety.  Most kids will eventually ask if you are dying.  Believe it or not, that is a fear they have.  Assure them that  you are not, that you just have the symptoms you have, and that it makes life more challenging for everyone in the family.  While it is not your fault that you have a disability, children's needs and feelings about the disability need to be heard and validated.

What have you found helps with parenting when  you live with chronic health symptoms? What are examples you would add to this list?

Healthy Spirituality and Suffering

Not everyone believes in spirituality.  Some find it a great comfort. Others may find it oppressive if they grew up in a harsh church.  As a Christian, I have found the following doctrines quite helpful on my journey with chronic illness:

1.  Disease entered the world through the Fall.  It was never God's moral will for the curse to happen.  That was the natural consequence of Adam and Eve's sin, and more globally, it is the natural consequence of sin nature.  I'm not saying that my particular sin caused my illness.  I'm not saying my illness is a punishment.  I am saying that regardless of the Fall, I have chosen at times to live apart from God; therefore, I contribute to the current curse that the world has. God is not some malicious God who does not care. If He were, then there would still be suffering in heaven, and we know that there is not.  I am in no way entitled to physical health in this life.

2.  I am not entitled to the American Dream. As a Christian, I fully believe that I deserve hell, eternal separation from God.  He is a perfect, holy God; I am not holy enough in my own accord to be in His presence.  He, however, in His great compassion, paid that price. Christianity is the only religion where we don't have to earn heaven or a relationship with our Creator.  What better news could there be! If what I deserve is hell, how could I possibly believe that I am entitled to the American Dream.

3.  If Christ was willing to be tortured and murdered for me, then not only does He understand suffering, I am inspired by His willingness to suffer and am inspired to attempt to maintain a good attitude about my own suffering.

4.  We are made in God's image and therefore, all life has meaning and purpose. Whether I am able to speak to thousands at a conference or simply give praise to God while I am sick in bed, my attitude has the ability to inspire others to believe in God's great goodness. That has meaning and purpose.

5. I am never alone in my suffering.  Christians believe that we have a personal relationship with God.  We have the Holy Spirit who comforts us.  I can not begin to say how many times I have sensed God say in my spirit that He is watching over me.  His compassion brings me comfort.

6.  We are part of a Body.  I can contribute to God's Kingdom by praying for others in the church, by showing the fruit of the Spirit, by giving God glory, even when I physically feel feeble. As part of a Body, it is also okay for me to ask for help. Contributing to other believers brings a sense of belonging and meaning.

7.  I can be transformed by the renewing of my mind.  When I get the distorted thinking out of my head and focus on how loving and good God is, I am able to maintain gratitude. Weed out from your mind all the "shoulds" you have gathered over the years. Ask God to fill your mind with truth.  His ways are not burdensome, the Bible says.

8.  Jesus rested.  He took care of His physical needs.  Therefore, I do not need to feel guilty about not being able to get to church or not being able to keep up with chores.  He led by example, the importance of honoring our body's needs.

9.  Life does not end, but suffering does.  Some day, this life will continue in a different form, but I will no longer suffer.  What a huge hope we have!

10.  God values rest so much more than our go-go-go culture.  Investigate the Bible; it is full of celebrations and rest and meditation. It starts in Genesis when He rested on the seventh day.  Note too that He does not consider it prideful to call your work good.  Take confidence in the gifts God has given you and know that it is okay to balance those with rest.

11.  The Bible also says that God works things out for the good of those who love Him.  He always makes good out of the bad.  He does not cause the bad, but He makes good out of it.  Isn't that a great promise!  What good has come from your suffering.  Start keeping a journal.  You will be amazed at what you discover!

12.  God told Paul that His grace was sufficient for him.  Call on His grace.  When your meds are not working, or you feel you cannot take the pain, call on Him.  He will give us grace in time of need.

13.  Worship.  Spend time in His creation.  Sing songs of praise.  Tell Him how magnificent He is and how much you appreciate Him.  It is difficult to worship and be depressed or anxious at the same time.

14.  Jesus had boundaries.  The religious rulers of His day tried to make religion about works, but Jesus came to free us from trying to earn our place in heaven.  What a gift! We are free; our relationship with Him is unconditional of anything we could be or do.  We just have to accept it, AND he role modeled boundaries against systems that would chain and weigh us down emotionally and spiritually.

15 Jesus role modeled meditation. He would spend hours praying and quoting Scripture. Meditation did not start with transcendentalism.  It started with Christ.


Does your faith bring you peace and comfort in your suffering? In what ways has embracing your faith brought you peace in the midst of suffering?  In what ways has it brought  you a deeper sense of meaning in life, despite suffering? How has it healed any distorted thinking you once had?

Finding the Good in the Bad

This is probably the most important step in finding peace and joy in life despite having chronic health issues.  What is the good that has come out of your having chronic health issues?  If  you can find that and embrace it, you decrease the time you spend fighting your illness and instead, fully live in the moment, appreciating your life.  You will also more quickly be able to move towards your goals, because the weight of depression and resentment for what you think your life would be without chronic illness will no longer be there.

Here are some positives I have embraced over the last seventeen years:

Having chronic illness makes me a calmer, more peaceful person.  I do not have the energy to get upset.  I also do not have the energy to be excited.  That means that almost always when there is stress, I choose radical acceptance.  I let a lot of stresses roll of my shoulder.  If someone is rude to me, I probably will not say anything.  I probably will not care.  Here it is, ready?  Because my energy is limited, I refuse to give others the power to take emotional energy from my body unless I willingly choose to allow it.  I do not want to spend my energy on something negative.  That said, I also probably will not spend much time with those people.  I make sure that the people I do spend time with bring positive energy into my life and I into theirs.  Now, I am not talking about people who are sad or upset.  I can handle that.  I am talking about people who are demanding or who want to blame others or expect others to fix their problems. Your problem is not my job to fix.  Your anger is not my job to fix.  Your judgment of me is not my problem. That may sound harsh, but it is healthy.  Isn't that an amazing treasure my illness has taught me!  Healthy internal boundaries, not giving away my emotional power, I would not trade that outcome of my illness for my physical health.

You will find that this is not just about people though.  You will also find that life circumstances do not stress you out too much either.  If my energy is limited, I am not going to spend it on worrying about a change at work or the dent in the car that just happened or the $1000 home owners' insurance deductible that came with the recent storm. I refuse to let circumstances rob me of my peace.  Now, I am not God.  I have my limitations, but I have exponentially more power to turn off my internal stress alarm than I did when I was healthy.  When you are sick all the time, those kind of circumstances are seen through a much different lens.

Guess what?  When you are a calm and peaceful person like that, you attract healthy, calm, peaceful people into your life!  I would love to have my health back, but I would not want to trade this amazing positive that has come out of having chronic health symptoms!

Here is another positive:  my kids have learned a level of empathy and compassion they would not have otherwise learned. That helps me let go of the grief that they do not have a mom who can do all the fun things with them they would like me to do.

Here is a fourth positive.  I  have mentioned this one before.  It is that pain reminds me I am alive. Every day is a blessing, a reminder that I get to enjoy my family, my friends, and my job.  That is a welcome reminder. Pain reminds me I could have died in my accident.  Pain reminds me that I did not die in that accident.  Pain reminds me that I am so blessed with wonderful people and experiences in my life. I do not mean that in a masochistic way.  I am just saying that you can always re-frame something negative into something positive.  Look to see the good that comes out of the negative.

Fifthly, I have learned to live in the moment, not speed on to the next goal.  I still have goals, but they are done in "turtle mode".  I get to smell the roses along the way because I am not plowing speedily ahead to the next race, the next goal.  Life is usually wonderful, or at the worst case scenario, more tolerable if we embrace living in the moment.

Finally, I have learned to respect my body.  This is the body I have.  It is not bad.  It does not have to be perfect.  It has needs.  I have learned to honor those needs and to value balance.  I no longer try to work 50 hours a week.  I no longer try to have the house looking perfect. I listen to my body.  Sometimes that means crazy things like using paper plates for a week so the dishes do not pile up on the counter. Sometimes it means going to bed at six p.m. How many people in their early thirties embrace listening to their body's needs?  Yeah, I am not thirty, not even close, but I did have to learn this at thirty one.

Being peaceful, my kids learning compassion, appreciating the good in your life, mindfully enjoying the moment, respecting my body, these are positives that have come out of my having chronic health symptoms.  I would trade my illness, but I would not trade my journey-the positives my illness has taught me about life.  What are the positives that have come out of your illness? How often do you allow yourself to embrace those positives? Make a list.  Look at it daily.  Remind yourself that good always eventually comes out of the painful things in our lives.

Positive Self Talk

"Self talk", it is such a buzz phrase.  It truly is at the crux of mental health. Self talk is the subconscious chatter in the back of our head.  In our fast-paced, distracted culture, it is very difficult to identify self talk.  These are not just the messages we say about ourselves.  Here is a common list of self talk categories:

I am statements
I should statements
People are/people think/people expect...
Men are ....
Men should...
Women are...
Women should...
Everyone one...
No one...
Life is...
Life should be...
God is...
God should...
My body is...

These statements are not always bad, but they do lead to core beliefs about ourselves, God, and the world, so it is important to catch them, identify them, and if they are unhealthy, re-frame them.

Here is an example.  I caught myself at work one day telling myself things like, "My head hurts; I don't feel good."  Imagine how a person would feel about their job if this is the chatter in your head associated with your time at work!  So I re-framed it. "I am honoring my body by listening to it and taking the medications I need.  I am honoring my spirit by doing a rewarding job that I love."  Imagine the difference in my mood and the meaning I felt in my job that day!

Here's another one, "My body is not good enough." Remember, the disease causes problems in functioning, but your body itself is not bad.  One causes shame; the other is just a fact.  One is a judgment; the other is a statement.

How about this one, "This isn't fair.  My peers are able to have a great job, be in a relationship, enjoy traveling..."  The whole "life isn't fair" statement will only get you depressed and bitter.  Entitlement does not get us anywhere in life, nor does it encourage empathy. At best, others will pity you, which is not what you want.

Here's a big one, "People are selfish; no one cares."  Trust me, that belief will never help you. How about, "I am so blessed by the people in my life who do care. I want to give back by expressing my gratitude and helping others when I can."

"Should".  Get rid of all your "shoulds".  They get us stuck instead of moving forward.  Replace them with "I could...".  (And not "I could if only", just "I could...")

Stay away from judgments.  Observe what you see, hear, etc.  Then focus on what you need.  Ask yourself how you can get that need met.  Be creative.

Here are some positive self talk statements I have worked on since being diagnosed:

• I do not need everyone's love and approval
• I am perfect enough.
• I am powerful.
• I am more powerful than I think I am.
• God is always good.
• I am not entitled to health, wealth, an easy life.
• I am thankful for what I have.
• Focus on the good in others.
• I set healthy boundaries.
• My body is not bad. 
• I am not weak.
• I feel more peaceful when my home is in order, so I will use less distraction to deal with physical pain and will ask for more help when I need it.
• Many people care.
• I am not entitled to an easy life or a healthy life; this is not yet heaven.
• God is always with me so I am never alone.
• I am honoring my spirit by working.
• I am honoring my body by exercising, eating healthy, getting good sleep, taking medications.
• God doesn't owe me anything but has given me more than I deserve.
• Life is stable
• Life is good.
• When I don't feel good, I know how to get my needs met.
• If today is not a good symptom day, tomorrow is a new day.
• It is okay to state what I need.
• Life is always a gift.
• Pain reminds me that I could have died in my accident and instead get to enjoy marriage, kids, my job.  Pain reminds me that I am still alive.
• I do not have to do things that make my health worse, and I definitely do not need to feel guilty about not doing those things.
• I am happier working.
• I can create comfort; I do not need to turn to food for comfort.
• God cares.
• God weeps with me when I weep.
• What I do with my life has eternal value.  Even if I am stuck in bed, my attitude can encourage others.
• My disease might make me quieter, but my being calm brings others and myself peace.
• My kids have a peaceful mom.  That matters more than being able to go and do things.
• My kids get to learn empathy (instead of the dreaded "My kids have to grow up too fast because of my health").
• My symptoms have taught me...........and that makes my life better than it was before.

What is your self chatter when it comes to your health?  Begin to identify it.  Then re-frame it in a way that motivates you to stay positive.

The Importance of Margin: Part 2

Yesterday, we talked about the importance of having margin in your health and in your time.  Having margin in your finances, your space, and your relationships can also help reduce stress.  Margin means having a buffer or extra so you do not run out.  Let's take a look at these.

Your Finances: Okay, that is a topic no one wants to discuss.  However, if you give yourself margin in this area, you will be shocked at how much less stress you have, and again, stress is probably a top trigger for chronic health symptoms. No matter what your circumstances, be purposeful about creating more financial margin than you would if you were healthy. You will likely have higher medical expenses and lower income if you live with chronic health issues, so do not ignore this category.

• If you are working, have enough saved that if you have to take unpaid time off, you can.

• There are LOTS of blogs, podcasts, and youtube channels with information about how to get your expenses down.  https://www.livingonadime.com/ is one of my favorites. When we started on the journey of gaining financial margin, we cut our monthly grocery/toiletries/cleaning products bill from about $1,000 a month to $500 for a family of 4. That still gives us a very healthy diet, plus a few junk food snacks. For curiosity's sake, we cut all the junk food for a couple months and switched from dry cereal to hot cereal. We discovered the four of us could eat healthy for $200 a month!  No one was thrilled with this, so we bumped it back up to $500, but that is still $500 less per month than we were spending! Cut the Cable. Get a cheaper phone plan. Take the bus. Get a roommate. 

• Grow your income.  I have a cousin who is pretty disabled.  On the days that she can, she is a PCA for another disabled family member. This supplements her social security disability.  Figure out a side hustle that does not give you stress.  There are many ways these days to make money online. I also knew a patient who, on top of having epilepsy, has had numerous accidents.  He can barely grasp with his hands, has chronic nerve pain, and has to walk quite slowly.  He works a physical job two days a week.  It goes back to balancing your body's needs with your emotional needs.  He finds his mental health is much better if he works part time than if he does not have a job.  This is not a judgment on my part.  It is just a recommendation to know your limits and be mindful of what is in your best interest.  No one else can tell you what those limits are.

Your Relationships: Remember Maslow's Hierarchy?  It is easy to stop spending time with people when your health needs are not being met.  However, it is SOOO important to keep spending time with people.  If you do not take care of your emotional and social health, your physical health will likely get even worse.

• Make sure you are getting at least 15 hours a week of non-task time with your significant other.  Watch a movie together.  Read a book.  Talk about how your health is affecting you. Share a dream. Play cards. Ask each other about your high and low for the day.
• Have at least 3-5 friends who "get" you. These are the friends who understand when you have to change plans due to a flare-up or when you cannot be on the phone because of a migraine.  These are also the friends who can call  you when they are going through a rough time.  Pour into these relationships.  They bring joy and meaning to your life, and you do to theirs as well.
• Get involved in contributing to the well being of others.  You will be shocked at how much joy this gives you.  It might be an online support group, or helping your sister with her kids or bringing home-made muffins to your neighbor.

Your Space: This is my current goal in life: getting rid of so much of my stuff that NO room in my house feels the least bit cluttered. 

• It is amazing how much more pleasure and peace I get from my house when the space is not cramped.
• It is so much easier to find what you need when everything has a home.
• There is less stuff to have to clean or put away.
• I am moving in the direction of: if we decide to downsize to a smaller home, the task will not be over whelming.  That may not happen for 10 years, but in the meantime, I am shocked at how much pleasure I have found from my home by having it less cluttered! Joshua Becker, best selling author of The More of Less, calls this "rational minimalism". I am not talking about getting organized.  I am talking about getting rid of everything I do not need/have not used in a year or does not bring me joy.  There are a few sentimental items we all hang on to, but not everything needs to be sentimental.  Take a picture, upload it to your computer, and get rid of many of the items that are sentimental.  It is okay to hang on to some of them, but start getting rid of as much as you can.  You will be SHOCKED at how much peace and joy it brings your body and your mind! 

I did not take before pictures, but here are some pictures from after I de-cluttered.  I love the open counter-tops, and I find that when there are just a few items on surfaces in the living room, I am able to enjoy those items more than when there are many, still working on down-sizing the books.  I  have been working on this process for years.  When you have chronic fatigue or chronic pain, you cannot expect yourself to conquer an entire room in a week, but maybe start with one surface.


Your health, your time, your finances, your relationships, and your space, all of these need margin, an extra buffer, in order to reduce stress and live counter to the culture's theme of go-go-go. I am guessing I have missed a few categories.  How can  you slow down your life?  What are ways you can take responsibility for being less stressed in these areas?  What are other categories or other strategies within these categories that you have tried?

The Importance of Creating Margin: Part 1

I have two stuffed turtles next to my bed.  They are a daily reminder that I can do anything that is important to me; it just takes me longer than it did before I was sick, and that is okay.  It is okay because I create margin or buffer in my life: margin in my physical health, my time, my finances, my space, and my relationships.  That way I rarely feel stressed. We all know that stress makes chronic health worse, and making our health worse is not an option if we can help it, right?

So, what does margin look like?  How do we create it?  The answer is that you have to be intentional.  We live in a culture that does not value margin.  Statistics say that 70% of Americans have consumer debt, and 50% live paycheck to paycheck. Most Americans talk about being too busy and stressed. Most Americans want more time. So, if we are going to create margin in our lives, we will have to be very intentional. Consider the following categories:

Your physical health:  What can you do to give yourself more strength and energy than you have right now?

• Do you exercise?  Is it an option?  Not everyone can exercise, but most people have the ability to swim.  Swimming is the exercise with the lowest impact on the body but still raises your heart rate.  It is often not safe for me to run or even sometimes to walk outside.  However, the treadmill is less triggering of vertigo for me as long as I am keeping it to a brisk walk.  Most weeks I am capable of walking 4 times a week.  I am shocked at how much more energy I have on the days I exercise. There will be days you cannot get out of bed, but even on those days, make sure you do your stretching.

• Nutrition: do you stay away from empty carbohydrates and make sure you get enough protein, vegetables, and fruits?  This is something you can control. I find that I am noticeably healthier when I eat healthy.  Is food something that honors your body or something you go to for comfort?  Your need for comfort is NOT something for which you should feel shame.  Everyone needs comfort at times, especially if you are in pain.  Find strategies that meet the need for comfort but that do not have negative long term consequences.  Maybe hot tea can still bring comfort but does not spike your blood sugar.  Diabetes or not, keeping your blood sugar form spiking will help lower stress in the body.  When eating fruit, eat protein with it so that the protein helps to stabilize blood sugar.  It is important when eliminating a food or behavior to replace it with something else. I find that eating fruit helps curb my desire for sugary snacks.  I also find that when I am tempted to eat junk food, if I take that as a reminder to pray for someone I know is suffering with chronic pain or chronic illness, it helps me maintain my boundary of not eating the junk food. Also, consider non food/beverage strategies for comfort: a hot bath, a soft blanket, an app of nature sounds. If you are not yet a vegetable lover, start slowly, but then take a multi-vitamin that your doctor recommends. Have you researched the foods that can trigger inflammation?  Ask your doctor or your nutritionist about these. Drink enough water.  Nutritionists say that we need 1 ounce of water a day for every 2 pounds of body weight we have.  Dehydration can cause increased fatigue and increased muscle cramps.

• Sleep:  make sure you are going to bed at the same time every night and trying to get up at the same time every morning. Sometimes your body needs more sleep, and that is okay.  Just do your best to be as consistent as you can.  Create an environment for sleep that is peaceful. Do not exercise in the evening as this makes it more difficult to relax and go to sleep. Do not drink caffeine or have high sugar foods before bed; these can make it more difficult to get quality sleep.

• Take your medications. Get to your doctor appointments.  Take notes at your appointments so you do not forget the instructions.  Follow your doctor's instructions.

Your Time: Nothing creates more stress than being pressured for time. 

• Set your alarm thirty minutes earlier than you think you need.  Take 15 minutes in the morning to read and meditate.  
• Set an alarm an extra 15 to 30 minutes before you think you need to leave for an appointment.  This leaves time for traffic, getting lost, or other issues that may arise.
• Use a calendar.  If important tasks and appointments or lists are written down,  you are less likely to forget them. 
• For longer term goals, give yourself 2 to 3 times longer than you did before your diagnosis or longer than you think it takes others who are healthy.  I have 3 classes I have to take in the next 3 1/2 years. If I take one a year, that gives me plenty of time.  Yes, it may happen even sooner, but if I spread it out, I am more likely to succeed. With shorter term goals, I figure I give myself weeks for what used to take days.  For example, if we are planning on company, I give it days to plan.  Recently we had our daughter's graduation open house.  I planned for months. It went smoothly, but only because I had that buffer.  Plan, plan, plan ahead. 
• Then again, be willing to scrap the plan.  There are those days when I have a list of things I want to do, and suddenly my body says, "Nope, change of plans.  Today is a 'take your meds and stay in bed day'". 
• If you live with chronic pain, you get so used to using the mind tools of distraction and self soothing that it is easy to not live in the moment.  Mindfulness is a very important tool though for minimizing stress and creating physical margin.  Sit, clear your thoughts of all your to-do items, breathe slowly and deeply from your diaphragm, relax your shoulders, and just listen to the quiet or to the birds or the wind.  Slowing down and living in the moment not only creates more joy, it significantly lowers stress, which lowers physical pain and often other chronic symptoms.
• Consider what responsibilities you can drop. You can only give what you can give.  If it brings you stress or fatigue, you do not have it to give.
• Do not be afraid to ask for help when you need it.

What are ways you can create margin in your health and in your time?  Do you have a symbol that reminds you it is okay to live counter-culture and okay to take care of your needs and be in slow motion.  What is your turtle symbol? Do you shame yourself for not getting as much done as your peers, or do you give yourself compassion and gentleness? 

Tomorrow, we will discuss the importance of having margin in your finances, your relationships, and your physical space. 

Getting Your Needs Met: Part 2

Understanding your physical and emotional needs and being able to communicate them in a healthy way is an absolute necessity if you are going to get your needs met.  Your needs are ultimately your responsibility, but we are all social beings, and being social requires healthy communication.

I have found that the best and most efficient method of identifying and communicating needs was established by Marshall Rosenberg in his book, Nonviolent Communication. He also has numerous Youtube videos. If you go to the website https://www.cnvc.org/Training/needs-inventory, you will find a printable list of "needs inventory", as well as a list of printable emotions "feelings when your needs are satisfied" and "feelings when your needs are not satisfied".

The basic categories of emotional needs that every human being has are:  connection, physical well-being, honesty, play, peace, autonomy, and meaning.  Rosenberg give the simple suggested form of stating "I need....would you be willing to....?".   

I have found that those of us with chronic illness have to work all the harder at communicating these needs because it is seldom that we are need-free, and I don't know about you, but when my needs go unmet for too long, it is not easy to be the person I want to be.  That it, it is not easy to be patient and kind and respectful. When  you have been suffering from severe pain or debilitating symptoms for hours on end, it is easy to become demanding or depressed.

So, take a few moments, practice mindfulness.  Sit, breath deeply, count your breaths, and ask yourself, what is your body feeling right now?  What do your mind and body need?  I have often found that if I am feeling irritable, it is probably a sign that I have ignored my health needs for that day for too long. Listen to your body.  Do you need one of your prn meds? If that is not an option, or if you do not want to deal with the side effects of medications at that time, then look at that needs list from the nvc website.  How can you ask for or create more peace, more physical well being, more autonomy or connection or honesty or meaning.  For me, when my symptoms are flaring, it is a sign I need peace/quiet.  I will often go to my room, which is my haven.  My kids know, they can always knock, but that they have to be quiet.  We might talk softly or watch a movie together or color together or read.  Sometimes, I let them know that I am struggling and need rest and quiet and that they are welcome to join me later. I also might let my husband know, "I need to eat, would you be willing to bring me up something to eat?".  I have often asked my son, "I'm not feeling well; would you be willing to bring up my medications?"

There is no shame in admitting you need help.  Every human being needs others. Let others know what you need but do so in a gentle and respectful yet assertive way that gives them permission to say no.

Reference:  Rosenberg, Marshall.  (2003). Nonviolent Communication. Encinitas, California: Puddledancer Press

Getting Your Needs Met: Part 1

In living with chronic illness, it is easy to feel like one's needs are never fully met and sometimes even completely void. Depression, irritability, and anxiety can easily set in at this point.  Remember that the journey is about balance between radically accepting what you cannot change and taking responsibility for everything that you can.

Let's begin by looking at Maslow's hierarchy of needs.  Maslow theorized that needs flow in a hierarchy; higher level needs cannot be addressed or even valued until the lower level needs are met.

Physiological needs include: food, water, sleep, shelter, clothing, and breathing.  Chronic illness can certainly make these needs difficult to meet. If you cannot work, how do you find enough financial resources to meet these needs? If pain keeps you awake, you do you meet the need for sleep?  If you cannot get to the grocery store, how do you meet the need for food? Here is where it is so important to understand the resources that are available and the power you have to attain these resources.  How can you be more creative about developing an income that works with your symptoms, an income where your symptoms do not threaten  your ability to maintain that income?  Look outside of the box.  Here is where your disability becomes an asset; you are forced to be more creative at problem solving.  Many people with disabilities find online ways to make money. How can you turn your skills and interests into a marketable need for others in a way that does not impair your disability?  Get creative, have fun with this one, and do not get discouraged if it does not succeed as quickly as you would like.

Many people with disabilities learn the art of bartering. Perhaps a friend can do your grocery shopping for you, and you can cook a meal for them.  Perhaps you are skilled at flower arrangement and your neighbor has the time to come clean.  Look outside of the box.

Finally, do not feel guilty about utilizing government resources.  Most of us have paid into Social Security and Medicare at some point in our lives. Needing to utilize it is not taking from society.  Most counties have food banks as do many churches. States have state run medical insurance (Medicaid).  Many states have subsidized housing including: Section 8 voucher, Section 8 project based, Public Housing, etc.  United Way keeps a list of resources available in every state and in many other countries. In the United States, you can dial 211 to access United Way.

Find ways to get these basic physiological needs met so that you can move to the next level of needs.

Safety needs include: personal security, financial security, emotional security, health and well being, and safety against the negative impacts of accidents or illness. Ah, there's the rub, eh?  So, we all have illness, chronic illness.  The trick here is not to become symptom free.  The trick is to keep symptoms manageable enough that the symptoms do not prevent needs from getting met.  This sounds so abstract, so let's break it down.  Can you work outside of the home and maintain safety physically and emotionally?  What do you need in order for that to happen?  Do you need a cane, a wheel chair, hearing aides, a personal care attendant, work accommodations, limited hours, medications? Be open to what accommodations you need in order to keep safe while working.  If there are absolutely no options for maintaining safety while working outside of the home, then it is time to get creative about finding work you can do from home or finding those resources we talked about earlier.

That is just work though.  What accommodations might you need in order to maintain safety at home? Call your health insurance and talk with your doctor or a local social worker about devices that can assist with safety at home.

Emotional safety:  read the "Americans With Disabilities Act" as well as the Constitution.  Educate yourself about what your rights are.  Many people with disabilities end up facing fear and harm by not knowing what their rights are or what local advocacy resources are available.  If you do not know, ask your doctor or call your county.  Set boundaries with others.  Let them know what you need.  Ask if they are willing to assist you.   Most people feel joyful to be able to assist.  Do not feel guilty for this, or you will rob them of their joy.  Instead, pay it forward. I have a cousin who is very disabled who regularly posts about the joys in her life.  Do you know how many lives she touches and inspires with these posts!  You have no idea how valuable you are to your community. Be ready to say "no".  Be ready to kindly ask for help. Know your rights and the authority that is set in place to protect your rights.

We've already talked about financial security.  Let's talk about health and well being.  For most of us, this is not about becoming symptom free.  That is a battle we likely will not win and thus would be spending energy we do not need to spend.  The key here is managing symptoms enough that we are able to create a life we enjoy.  Enjoyment does not need to be about vacations or a big house or climbing the corporate ladder.  Enjoyment is about mindfulness: the ability to live in the moment and appreciate it for what it is.  

• Go outside, feel the breeze, take in the rays of the sun, watch the birds, look at the waves, put artwork in your home that brings you pleasure and peace.  
• Get to your doctors.  Follow their directions. Do not give up when a med does not work; instead let your doctor know and ask to try a different medication.  If the side effects outweigh the benefits, let your doctor know that.
• Exercise regularly if it is safe to do so.
• Eat healthy-lots of vegetables and fruit, healthy proteins and fats, low carbohydrates and sugars.
• Go to bed at the same time every night and get up at the same time every morning.  Create a relaxing environment in your bedroom.
• Do not do things in the evening that make it difficult to relax and go to sleep at night.
• Train your mind to focus so your thoughts do not prevent you from being able to relax and go to sleep:  count your breaths as you tell each muscle in your body to relax, count the ticking on the clock or the cars you hear passing by.  You cannot count and let your mind race at the same time.

These are ways you can own responsibility and power in this area of your health so that you can create a life you want, a life you enjoy.

Love, belonging, esteem, and self actualization can happen after these lower level needs have been met, but for those with chronic physical symptoms, or mental health symptoms,  much time and energy has to be placed on these lower level needs.  Focus your energy there first, and then you can move forward with these higher needs.  Then you can start to look online for ways to connect, check out Meetup to find groups with similar interests or even similar disabilities to yours.  Find camps for people with chronic health.  In Minneapolis, we have a non-profit that has social groups for people with chronic illness. Find a local church group.  Reach out to your neighbors.  Yes, these things take energy.  They also take the courage to explain that because of your disability, you may have to change plans.  Most people will be flexible.  If they are not, then they are not the kind of people you want in your life anyways.

Be open and honest with family and close friends about what you need.  Perhaps you need connection but in a quiet room with no lights that can trigger migraines.  Perhaps sitting and reading together is a way to connect that does not trigger health symptoms.  Watch a movie together. Play a board game.  I have discovered that my two little nephews bring me immense joy, so while I cannot physically take care of the two of them without help, I love when my sister brings them over and we play with them together.  Add these kinds of activities back into your life in ways that work for you.

Do not be afraid to try things thinking you may fail due to your health.  You might, but how will you know if you do not try.  Give yourself extra time to accomplish them.  If you want to take a class, maybe ask for the syllabus a month in advance so you have extra time to process.  I have two stuffed turtles in my room.  They remind me that no matter how slowly I go, movement is still movement.  Surround yourself with others who are working towards similar goals.  You may be surprised to learn that even healthy people are struggling with those goals, and you can motivate and encourage each other.

Once all the lower level needs are met, focus on how you can contribute to your world in a way that energizes you.  What is it about who you are that brings the world joy and brings you joy?  Did you used to teach elementary school?  Find ways to teach others. Did you used to be a lawyer?  Find ways to help others obtain information about their legal rights.  This is not about what  you do.  This is about finding strategies to "be" who you are in a way that contributes to others and brings you joy. Do you hate injustice?  Role model peace and egalitarianism.  You have no idea how many lives you will touch.

Where are you on Maslow's pyramid?  What are you doing in each stage to move forward with honoring your needs?

Reference: Wikipedia, July 8, 2018.

Healthy Grieving: Part 2

Yesterday I talked about how important it is to understand the grieving process. You don't want to get stuck in grief, and understanding and embracing our feelings is part of healthy grieving.  The hardest part of grief and loss when it comes to chronic illness is that your health changes from day to day and from year to year.  One day you may be able to get to the grocery store, meet with a friend, and fix dinner.  The next day, you may not be able to get out of bed.  Also, as disease progresses, you find your new normal only to discover that a year or so later, you lose even more of your "normal".  For these reasons, grieving loss of health and loss of your "normal" isn't a one time process. It's a very messy process. This makes it all the more important to understand the grief stages and identify where you are in that process. To review, the fives stages are: denial, anger, bargaining, depression, and acceptance.  Yesterday we discussed denial and anger.

Stage 3: Bargaining: This is a time of asking, "If only I had done....maybe this wouldn't have happened, or maybe if I do...….it will go away." It is a series of "what if" statements.  "What if I.."  "What if my doctor..." This may be the most confusing part of the grieving process to navigate because there is some truth here.  With many chronic illnesses, doctors will say, "Try this".  So, we do not know what will happen until we try.  So what can be done to be as mentally healthy during this stage as one possibly can be? 

• It is important to not focus on the past (If only I had done or not done...maybe I would not be sick.)  This only causes a sense of guilt and gets us stuck in the grieving process. Self anger and self blame NEVER help one's physical health. Stop looking at what you think you could have done differently and commit instead to honoring your body from now forward. 
• Also, oddly when you recognize that your questions are part of the grieving process, it is easier to stop asking them.  Simply identifying that you are grieving helps you not get stuck in grieving.  Ironic, isn't it?

Stage 4: Depression: This stage often feels like it will last forever. Symptoms may include: sadness, a loss of the ability to feel pleasure, changes in sleep, fatigue, change in appetite, social isolation, weight changes, and irritability. 

• Do not tell yourself to snap out of it.  These are normal responses to the loss you are experiencing.  Everything in your life has changed. You may no longer be able to work, drive, walk, do the leisure activities you once enjoyed, or even have the energy to make a meal.  These losses have to be grieved.  
• Do not run from that pain.  
• Do not try to analyze it.  
• Do not judge the depression or yourself.  
• The more you let yourself feel the sadness and hurt, the more quickly it will pass.  
• If you have a loved one who is emotionally supportive, call them.  Talk about what you miss about the old you or your old life.  
• If you do not have support, join a support group either by calling your local hospital to find resources or by joining an online community.  
• Journal about your loss or draw out your feelings on paper, cry, let your family and friends know you are sad.  
• If you find yourself struggling with suicidal thoughts, talk with your doctor immediately and use distraction and self soothing to help you cope. 
• Depression can last from seconds to months when it comes to dealing with chronic health issues. Be patient with yourself in this stage.
• Despite how fatigued you may be, this is the most important time to not socially isolate.

Stage 5: Acceptance.  Acceptance does not mean that you are okay with being sick.  It does not mean you are okay with the losses.  This is a stage where you embrace our "new normal".  Here are some ways that help with this stage:

• Start a daily gratitude journal.  It is easy to see the losses in life; every human being has to be intentional if they are going to see the good in their life.  Research even says that our brains remember negative experiences without having to dwell on them; whereas, in order to get pleasure from positive experiences, one must intentionally dwell on them for at least 15 seconds.  That might not seem long, but try it once; it is longer than you think.  Building a gratitude journal will enable your brain to see and feel the positive that is happening in your life.
• Ask yourself the questions, "What are the good things my illness has taught me or changed in me? and "How is my life better since the diagnosis?" These may seem like odd questions, but those who have had illness for years can attest that good always comes out of bad.
  -Has it taught you to slow down and enjoy the moment, instead of always racing ahead to achieve? 
  -Has it taught you that people matter more than stuff? 
  -Has it taught you that healthy identity is not about what you do but about who you are? 
  -Has it taught you to contribute to your world? 
  
  Good always eventually comes out of bad.  You just may have to change your focus in order to see it.  This cannot be done too quickly though.  Make sure you have gone through the other stages before you attempt this, or you can find it not working and ending up with feelings of bitterness and hopelessness.  
• Encourage others who are struggling with similar health issues.  Genuinely contributing to the well being of others ALWAYS helps one's mental health. This requires empathy, not pity.  It means we communicate that we understand.  It may also mean sharing our own story or sharing knowledge of resources. 
• Acceptance is also a stage where we find new strategies for creating meaning in our life.  If you taught school before you got sick, then you are a teacher.  You do not need to be in front of a classroom to teach.  In fact, these days, you can do that online.  Find a forum where you can teach others about resources you have found.  Maybe even tutor classes online.  Living out who you are in a way that emotionally energizes you does not have to be in a traditional job or in a job at all.  If you are an encourager, you can do this by having a good attitude and calling others to see how they are doing.  Go deep, beyond what you "did" in your healthy life into the "being"/ what was it about who you are that energized you in that role?  There are many strategies for living that out.  It does not have to be the job you previously had. Find ways to contribute to the world that emotionally energize you.
• Stay out of the "what if this gets worse" thinking.  You may have one bad day.  Remind yourself  that if today is not a good day/not one of  your typical "new normal" days, then today is today.  Tomorrow is a new day.  The "what if this gets worse thinking" can pull you out of acceptance and into such terror that you stop really living life. If you start having a month of worse symptoms or your doctor tells you your illness is getting worse, then it is time to let yourself grieve again.  You may experience normal minutes of grief here and there.  "Today I cannot do the social event I had planned; I am angry and sad about that".  This is normal and healthy, but do not let one bad day terrify you into worrying that your whole "new normal" is changing again.
• Own responsibility for what you can do about your health.  Eat healthy, exercise if you can, go to bed at the same time every night and get up at the same time every morning.  Follow your doctor's instructions.

These are the five stages: denial, anger, bargaining, depression, and acceptance.  They are not always linear.  You may find yourself bouncing around in the stages.  They can last seconds or months depending on the level of loss.  You matter, your emotions matter.  

Healthy Grieving: Part One

Yesterday, I talked about finding that balance between radically accepting your "new normal" and focusing on what you CAN do to create a life that has meaning to you.  In order to find that balance, it is necessary to understand the grieving process so we don't get stuck in it.

The most difficult part of processing through the grieving process when it comes to chronic health issues is that it isn't a one time process.  We can grieve, find our new normal, but then our symptoms may suddenly get worse, and we have to grieve again.  For most people with chronic health issues, the symptoms are rarely the same from day to day.  That is why it is so important to understand this process. The five stages of grieving include denial, anger, bargaining, depression, and acceptance.

Stage one: Denial:

I would love to say that not getting stuck means "feel your feelings".  However, the first stage in grief is denial.  It is an important stage, and we cannot ignore it. It is the stage where we say, "This is not happening.  The doctor must be wrong. I should get a fourth opinion. I should re-do that test or take a different test".  It is also a stage of shock.  We may walk around feeling like we are in a fog (I'm not talking about the normal brain fog that comes with autoimmune disease but the actual "I can't think straight because I'm in shock" stage.)  It is also a stage where we may continue on with our lives pretending to ourselves that everything is okay and not recognizing and validating the legitimate new needs our bodies have.  This, of course, usually makes our physical symptoms worse.  False guilt can really wreak havoc here.  Believing that we should still be able to do what everyone else is doing or thinking we are a bad spouse, parent, friend if we don't do those things only makes physical symptoms worse.  It is so important to identify that self guilt so we do not become bitter with ourselves or let our self worth be tied to something we cannot control. Shame never helps chronic illness.


So, what helps with denial? 

• Information.  Ask your doctors lots of questions, questions about prognosis and questions about what life style adjustments should be made.  
• Bring a pad of paper and a pen or take notes on your phone when you have your doctor appointments because denial makes it very easy to forget pertinent medical information.  
• Meet others either face to face or online who have suffered the same diagnosis for years.  Another thing that helps is space.  
• Create more time margin in  your day so that when you are numb and spaced out and cannot concentrate, it does not matter that you misplaced your keys or do not remember why you walked into the kitchen.  
• Write important information and task lists while you are in this stage to also help lessen the effects of poor concentration that comes with denial.  
• Practice  mindfulness.  Train your mind to only think about one thing.  Maybe it is counting  your breaths or stopping to notice what you see, hear, or touch around you.  This will not pull you out of denial, but it will help ease the poor concentration that is an effect of denial.

Stage 2: Anger: You may experience anger that your life has changed, anger perhaps at yourself for not being able to do the things you want to do or anger at yourself for not somehow preventing the illness, anger at the stress that may have led up to the diagnosis, anger at family for not understanding, anger at your body for not letting you do what you want to do or not letting you have the life  you had dreamed about having, anger at God, etc. 

• Again, the most powerful tool here is mindfulness.  Let yourself feel the anger.  Anger is not a four letter word.  Change requires letting yourself feel the feelings associated with change. 
• Another highly important tool here: re-frame how you talk to yourself about  your body.  No matter what your body cannot do, your body is not the problem.  The disease is the problem. Your body is still very good, and being angry at it will only worsen your health. Be angry, but direct it at what you are truly angry about losing.  You may lose finances, leisure activities, support from those you thought were friends, a job, you may even lose your personality because it is very difficult to face chronic fatigue and still have social energy.  
• Finally, depending on what your body can do, let yourself be productive with that anger.  Journal, draw, talk with a therapist, talk with a friend about your anger, go for a walk.

Are you in one of these two stages right now?  Can you remember them from when you were first diagnosed?  What are you doing to gain awareness?  What are some productive ways you can soften the effects of these stages and direct them in healthy ways?

My Story

When I was 31, I was diagnosed with a rare disease that causes hearing loss, debilitating dizziness, a constant scratchy noise in my ear, nausea, and fatigue.  In my 40's I was also diagnosed with fibromyalgia, which has caused me chronic pain, chronic migraines, chronic bladder inflammation, and extreme fatigue.

That said, I have a part time career that I love, a marriage that  brings me peace and joy, a spiritual walk that gives me rest, a healthy self identity and peace with my Creator, 2 kids who (despite the normal stresses of parenting) add pleasure and a sense of meaning to life, family and friends who support and add joy, and a home that I truly love.  Despite my symptoms, I went back to graduate school, yes that meant that some classes had to be online.  I also studied for my counseling license, passed the test and completed the LPCC license.  I'm in no way saying that everyone with chronic illness should be working.  You have to find your own way to find meaning and contribution.

You might ask how did I get so lucky.  I do indeed believe I am privileged.  I am a white woman whose parents helped pay for some of my education.  My husband's family has also given us support.  I don't take my white privilege for granted.

However, I truly believe that we have the power to create a meaningful life and that we cannot blame our happiness or lack of happiness on our circumstances.  Yes, one must grieve the losses chronic health issues cause.  However, that does not make me powerless to create a meaningful and joyful life, nor does it justify getting stuck in the grief. I hope that what I have learned in this journey will help others who struggle with chronic illness.

So, my first tip is this: Remember the balance scales where the two sides have to equal in order for them to stay at the same position/stay balanced?

Creating the life you want when you  live with chronic illness is similar to this scale.  You must balance radical acceptance of what you cannot change with an internal taking responsibility for what you can.  I cannot go run a marathon, but I can take as much responsibility for my health as possible.  If I used to find joy in running (yeah that never really happened for me), I can learn to substitute a new activity that does bring me joy. This takes creativity.  We cannot get stuck in black and white thinking, but with practice and with regularly challenging our all or nothing thinking, we can create a life that brings us as much meaning and joy, if not more, than the life we had before chronic illness or the life we envision healthy people having.

The need is meaning, the strategy for obtaining meaning can change IF we are open to maintaining that balance between radical acceptance and owning responsibility for what we can control.

Now, I'm not in this example talking about eternal meaning.  I'm talking about the sense of purpose we all feel when we contribute to those around us or the sense of joy we feel when we observe nature or hold a newborn child. I'm also not saying that everyone with a disability should work.  Sometimes, we contribute to others by having a good attitude when we don't feel good.  Others see that and are encouraged.  What I am saying is that in order to create a meaningful life when you live with a disability, you must first balance those two thought processes of radical acceptance and owning responsibility for what we can control (internal locus of control).

Radical acceptance vs owning responsibility for creating a meaningful life.  How are you doing with this? What brings your life meaning that you do have control over?  If nothing currently does, what are some things you can add to your life that would bring meaning?  Are you acknowledging your grief and loss and moving towards radical acceptance of what you cannot change?  If you spend your emotional energy being upset by what you CANNOT change, you will not have the energy to spend it on what you can.  Again, this does not mean stuffing your grief.  By all means, have those days where you are sad and angry about your illness; just don't stay in that place. Grieve AND focus your energy on what you can control that brings you joy and meaning.





See more information on my youtube channel:  https://www.youtube.com/watch?v=URlG8F6mHB4&t=1s