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?