Family Life in Sickness

While my man and I have been married for over 2 years, we have been fortunate enough to have escaped the stress of extreme health complications during our marriage. Does Lyme disease still affect us? Oh yes! Every day! But we were aware of (most) challenges going in. Because of health, we have waited to have children and as a result, have little to share in that regard.

But we know of several who have had children, several who married a normal person, and watched their friend and partner drastically change! The road is incredibly difficult! Due to this consideration, I interviewed a couple who is currently is batting extreme health issues, issues that were not there upon entering marriage. It was pregnancy that brought things to a head and health began rapidly depleting.

This couple (referred to as Bob & Mary), freely and honestly share about the struggles they have faced.

Q 1: Give us a brief review of marriage-present date, being sure outline who is sick & how long its been:

We (Bob and Mary) were happily married in 2006. I (Mary) had a few minor health problems as a child/young adult, but never anything too concerning, until my first pregnancy. While my health never regained the same strength since my first pregnancy and difficult labor experience, I did improve a lot. As time went on, we ended up having our third child several months before our oldest turned 3. In 2010 our youngest baby and I got a serious case of Giardia. It became the permanent marker for the start of additional health symptoms….

Q 2: what symptoms do you (Mary) experience today?

As I will mention later on, two things that significantly relieved my symptoms are rest and diet. But even still I experience the following issues below at varying levels:
-brain fog (yes, I’ve become notorious for setting accident fires in our ovens and scorching lots of pans!)
-other central nervous system issues
-dizzyness
-blood sugar swings
-noise sensitivity (this one is probably is one of the hardest for our entire family)
-insomnia (sometimes due to imbalance in the body, sometimes due to pain)
-mood swings, irritability
-fatigue (always tired, often weak)
-digestive problems, such as food sensitivities, poor vitamin/mineral/fat absorption, stomach bloating and gas
-face and limbs rapidly swelling/shrinking
-poor circulation
crawling sensations all over under my skin (due to hard to get rid of parasites in the lymph system)
-chronic toxin build-up in lymph system—Tanner nicknames me “Lumpy” because there are little lumps felt in my tissues practically everywhere in my body—wherever there are lumps, there is pain…..
-pain I hadn’t thought of counting how many types of pain I experience. Some of these are daily occurrences and others are not….or some of them come and go in phases:
  1. there’s the sharp piercing pain stabbing into my head—whenever this kind comes, it always stabs in one particular spot, and it doesn’t usually last for very long
  2. the weaker needle-like poking pains that I get all over in my GI tract and other pains all over too
  3. a localized/discomfort pain as things are moving through a certain spot in my colon
  4. the solid inflammatory pain entrenched in my tissues
  5. pain in the lymph vessels
  6. the gnawing pain that is dull in nature but very strong; this kind causes sitting or laying still to be a challenge
  7. joint pain
  8. sinus headaches: I can almost guarantee a headache anytime I use the computer or go to social events anywhere—my headaches always get worse and my escape is the bathroom)
  9. burning feeling under my skin
  10. a localized pain by my liver
  11. jaw pain

#3: How many children you have and what are their current ages?

We have three children: a 9 yr old son, an 8 yr old daughter, and a 6 yr old son. Their unique differences in personality are priceless and we love each one of them so much!

#4: Give us a basic outline so people know how you live today: how does health and having children affect living & work situation, your finances, social life, etc.

 We try to accept the fact that we are not able to live a “normal” life, and make the best of it.
Bob can’t put in a 40 hr work week without me collapsing, so he works less for $ and helps me and the kids more. We adapt to our limitations by driving cheap vehicles, not having regular cell phones (we opt for an emergency track phone, so there’s less bills each month), if we need the internet for something we use it at the library, and I arrange my menus according to the weekly store sales, etc.

If we go on trips, we have prepare and bring raw greens and lots of healthy forms of protein, supplements, etc. I don’t function well on fast food, and our kids do much better on healthy food as well!

#5:  What is your initial response when you think back on your experience of raising children with a sick spouse?

Bob:
The first thing that comes to mind are words like challenging, hard, difficult, painful etc. Although raising kids is a huge challenge and responsibility no matter the situation, there are many extra and difficult challenges raising kids with a sick spouse. There are many more challenges and issues that have to be worked through over and over.
Communication has to be frequent and ongoing. Sickness creates lots of inconsistency for everyone in the family, including the one who is sick. Having a schedule or boundaries is very difficult because things are constantly changing, and often within a half hour. For Mary, one minute the noise level may be ok, and the next it needs to be silent. Or one day she may be able to go on a family picnic and the next day it’s out of the question because she can hardly get out of bed. Or yet more likely is that you plan it and just as you are about to head out the door, the one who is ill collapses on the floor.
Plans are constantly changing. This is very hard for kids as they get their hopes up and then have to adjust when the fall-out comes. One thing we have learned is to be careful about telling our kids of coming events because whether or not it can happen is often out of our control…so much of the time. Because of the inconsistency in the home, I believe there is often more insecurity as well, which in turn creates more behavioral issues resulting in more difficult parenting….and so goes the cycle.
There are also constant changes for the kids in knowing who’s in charge in the home! One minute it’s mom, but when she has to check out because of exhaustion they have to know when to switch to dad. Again, very difficult for children.
Summing it up? In our situation, we would say that life would be 70 -80% easier if kids were not a factor in dealing with sickness. Maybe every parent would say that whether sick or not? It’s difficult to say for certain because we haven’t raised kids without chronic sickness. The effect of everyone’s illness is at a different level as well, so the numbers would change drastically depending on each and every situation. In spite of the difficulty, we wouldn’t trade our kids for the world!

#6: How did pregnancies affect life for both of you?

Mary:
As I mentioned earlier, Bob and I got married 10 years ago. At that time, all we knew was that I had back and neck pain, and that I was worn out a lot, but I figured that was due to long work hours. Three weeks into our marriage we conceived, and shortly after I became quite sick. I required a complete meal every two hours during the day, and had to eat 1 or 2 times during the night in order to have strength to function. On some occasions, even that didn’t help and I was then bed-bound and dependent on Bob to carrying me places. We checked into a possible diagnosis for the severity of my symptoms, but didn’t find much help. We didn’t think much of it because I was pregnant! Sickness is common in pregnancy, right? Unknown to me at the time, I was a carrier of Lyme disease.
Another issue that came up during pregnancy was sleep deprivation. I couldn’t get enough air to breathe laying full length. I felt the most comfortable propped up with a bunch of pillows and tried to sleep in a half upright position on the floor. I remember thinking after my babies were born how nice it was to be more comfortable laying flat in a bed again!
Bob:
Because Mary was not nearly as ill at that stage as she has been in the last 6 years, pregnancy did not seem like as much of a difficulty. Typical guy! What do I know about being pregnant? (Smile).
If we were to be pregnant at this stage though, I cannot imagine the difficulties involved! There are also emotional aspects of the situation that come with having to be in bed and feeling awful all the time. I cannot imagine how hard it could get, although I know many are traveling that road right now.

#7: What were the biggest challenges when raising young kids (the effects on marriage, spiritual, social life)

Roles- At first I was going to say, “I don’t know what I’d do without Bob helping out around the house”, but then I remembered. “Oh yeah, actually I do know what I do when he’s out of the picture for several days in a row….” I writhe around in pain on the kitchen floor with strength gone, and the lunch half fixed and hungry children wondering what to do now. That’s not an every day occurrence, but it seems like inevitably when our lives are the busiest, it comes to this.
So while it’s difficult to live without him helping out in the house, I will admit it’s also difficult for everyone in our family to adjust to life on the days Dad is home or is not home, and the type of order and disorder there is depending on who is in charge that day, as Bob mentioned already. Our lives as they are, definitely require flexibility, there is the good in it (smile).
Social life-My thinking and energy to engage with people runs out quickly when there are multiple conversations going on at the same time around me.
This may sound so strange to everyone, but I actually feel more alone when I’m at social group hangouts. Observing how care free everyone is and the noisy action everywhere that doesn’t disturb others is only a reality check that reminds me how abnormal my current health function is. Sometimes I get away and spend an extra few minutes in the rest room just to rest my mind and body enough to go back out and face the drama.
I get feedback from certain people who insinuate that depression is my reason for not leaving my house often. Their line of reason makes sense, and is true for some individuals. But I sometimes wonder if their assumptions would change if they only knew that my going out too much (force more energy than my body naturally expends) is when I find depressing thoughts hovering over my mind.
To be fair, some of the misconceptions people have about my sickness comes from my own misleading. I come across as if I’m stronger and healthier than I am….you know….that pride. Consequently other people wonder why we (mostly Bob) talks like my health isn’t good when I appear to be semi-normal in public. I do experience a wide range of symptom intensity between the 1-10 scale at different times.
When I feel horrible, I stay away from the public, so they don’t have to see me when I can’t fake it anymore. This is an area I’d like to change (to show realness), but I honestly feel stuck in this process right now.
More honesty still? I think my hiding stems back to a belief that my life is a problem to people. I wrestle with this, because it looks and feels so true! I don’t want to show my sickness because it will inconvenience others. They might become resentful if I make life uncomfortable/harder for them, and that might create other unhealthy cycles. Yep, definitely way too dangerous to show weakness! It’s so much easier to share about something when “I’m over it,” after I’ve been there, done that, learned from it and am moving on.
Parenting-Another challenge that comes in raising children when there are health problems is the necessity to limit their potential— our daughter really wants to take piano lessons and she’s so ready, the boys would love to do more art and science, there are so many outings each of them would enjoy! It takes me back to my struggle with the belief that my life is also hinders my kids’ potential. So I must accept that there will be gaps in my parenting: I can’t give them everything. No parent can, I know, but for those with extra limitations, these gaps are often more extreme. And yet, it’s so amazing that God can redeem our parental gaps and use them for good. If it weren’t for the hand of God, sickness would leave us without hope.
Sick kids-Unfortunately it appears like our kids may have inherited some of the weaknesses, as each one has a portion of the symptoms I experience. Our health issues could be far more severe than they are, so I am thankful for how well they can function.
Beliefs- I falter on either side of the fence here…..
Too often we set our own standard and define for ourselves what we need and resent whatever we can’t get as though we always know what we need and what would be best for us. If you’re reading this, and you don’t know God, what I’m about to say probably sounds like the most absurd thing ever, so bear with me, please….. I tend to think I need a certain amount of sleep, and I need a certain amount of time to rest in bed without kids interruptions, etc. After going days and nights in a row without sleep, God led me to re-adjust this belief of what I really need. To trust that what He values as need in my life is best….and do what I can to rest, but when it runs into the “out of my control” zone, to leave to Him to define my needs. He will give far more than ALL I need, according to His definition…..which is better than mine after everything is said and done. And I already feel the reward of more contentment when I adjust my thoughts like this. I try to keep in mind that my feelings about our situation doesn’t always dictate reality.
The error “on the other side of the fence”…… is to fall victim to our circumstances, instead of believing we have other options. Sometimes circumstances are truly out of our control. Other times they are not, we just THINK they are, because that is the path of least resistance we choose. We usually have some option for change……it’s often that we just don’t always LIKE our options. Usually in my case, the options require asking for specific help, or letting more things go that I valued or thought was a need.
I like this quote that I recently read in one of my health books, “You must learn a new way to think before you can master a new way to be”. Maryanne Williamson
Values- I believe there’s a hidden gift in chronic sickness- producing beauty and growth in our lives. The outside wrapping of this gift appears in big print, FORCED TO CHANGE—none of us want that! Depending on what we value, and the attitude we choose, this conflict could allow us to either open and access the gift to enjoy and share or else never get to it, because we can’t accept the ugly wrapping–the way it comes to us without choice.
I’ve found that when I stay focused on what I don’t have, like full health for example….it breeds discontentment and overwhelming hopelessness. But there is a sense of purpose and peace when I stay focused and value all I already have because Jesus is alive in me. It’s entering freedom to believe that what I already have is enough for me to live and love. Isn’t it kind of crazy to us that God is totally cool with using our weaknesses as much or more than our strengths?!

#7: What actions did you choose that helped you to manage life?

Ask for help! At times when we were been able to, we have hired help to come in once a week or so. Different ones came in and helped with housework, kids, meals, etc. while I had a break to rest and do health research.
One of my weaker points is time management. So I thought of someone who is really strong in this area and asked if she would take time to work with me for 6 weeks in this area. She was a huge help! We just did one phone call a week, with a couple e-mails in between sometimes, and a little home work and evaluating what is really most important to me. To this day, we still have more rhythm in our home, there is more order and kids know better what to expect in our day, even though the schedule still gets tweeked periodically, and it is unique in that it has an order, but no time frame…that way, if an episode happens, and I unexpectedly have to crash in bed, the kids still know what’s coming next when I revive, they just might not know what time it’ll come. The best part was I realized through her help, what one or two things were most important to me for the day to be a success.
Rest-We have pretty much set that I only participate in an extra event or town errand once or twice in the week at the most, besides church….and if Saturday was a complete blur with company and/or a sleepless night, I just stay back and have my own peaceful time with God. Any more activity than that just feels like too much.
Hot pack and Exercise- I have a material covered pack of rice that I use multiple times every day to help cut my pain and warm up my cold limbs. It really cuts the pain so I can get to sleep each night. Another thing that helps, esp. with the knawing pain, and other toxin pain is to do all different kinds of stretching exercises. Stretching releases pain for me, while work outs flare up the pain.
Diet –I gradually adopted a pretty strict health food diet, and that has helped me a ton! Some things my body doesn’t function without are: fresh cilantro(lots), fresh raw garlic (12cloves a day), fresh turmeric root, cleavers tea (it flushes my lymph system; a cup in the am and one cup in the pm)
Thoughts-I touched on this some already, but something I’ve found often is my perspective on life dictates what my attitude will be. So being intentional to keep refocusing on thankfulness and hope in what God gives and to teach this way to your children at their level is essential.

Books-I mentioned Brain Power was interesting reading, and also Colon Health by Dr. Walker; Freedom from Lyme Disease by Brian Rosner has a lot of health treatment recommendations which apply to any chronic illness. I am fascinated by reading the first few sections in Nourishing Traditions Cookbook by Sally Fallon…..There’s a lot in there on the complexity of balancing minerals. Too much of one mineral will cancel out another in your body, and so on.
Support– We’ve never pursued asking people for financial help during this time, but we’ve been so blessed with the compassion of friends generous giving to cover some of our dr. bills. And if any of you reading this are the givers, thank you!

#8: Looking back, what would you have changed (outside of health issues) to make life easier?

Do Research-I wish I would have learned more about specific facts of health BEFORE I got really sick, or when I first noticed problems. At the time, I didn’t know I could have done anything to prevent things from getting worse.
Now my disclaimer: If God (who always loves and cares) is allowing this for a specific reason—like He did allow in Job’s life as we see in the Bible, and with others too like Paul, then maybe there’s nothing I could have ever done to prevent these issues….
Back to my original comment though, take probiotics for example. I had always heard people say they were good for you, but I sure wish now that I would have researched to find out what specific role probiotics play in our bodies, and what the specific consequences are when you lack this flora. The book Brain Power (as I mentioned earlier) is an interesting book on this subject. My colon hydrotherapist told me recently that if I had been taking probiotics 4x a day she doesn’t think there would have been a chance for me to have ever gotten so sick. Again….I can’t deny the truth that God is sovereign, and is working this out for good regardless.
Balance Resources-Another thing I wish we adjusted was to not put as high a priority on scrimping our pennies and other assets. This would allow us more time and energy for other values, primarily God’s values. We scrimped more than anyone we knew because we enjoyed the challenge and it’s within our nature.

#9: If you knew a couple with serious health concerns were contemplating to try having their own children, how would you advise them?

The first thing that comes to my mind is to remember that God made life to be valued. If you are the one sick, don’t forget your life and vitality matters. If you are considering children, remember their lives are equally valuable. As you consider reproducing, keep in mind that whatever is of value deserves care and energy devoted. Bob and I have chosen to wait for my health to improve before trying to add more to our family primarily because we believe children are valuable enough to have quality invested into them.

#10: anything else you’d like to say to people with kids already or starting out

I spent a lot of time sharing about about the challenges of parenting with sickness, but there is also a beauty about raising children while your health is compromised. It has to do with what I said earlier: it produces change in a good way. Our kids have become more thoughtful of others around them because I’m sick. That’s a great trait I hope they take with them when they leave home.
Our whole family is being discipled in deeper ways of thinking than any of us would seek if we had a “normal” life. We’d be too busy. Because energy is so expensive with chronic sickness, I evaluate what is important more than I would if it was unlimited. I think things like, “When my kids leave home, and they think back to their childhood years, if I could only give them a little to hold, what do I want that to be?” I wouldn’t have time to think deep, if I had the energy to be on the go more, taking them to this event and that.
This is a different subject… For of us who have kids with sickness, maybe we should ask Autumn to host a support group conversation blog. : ) I have lots questions and so few answers in regard to my own children’s health needs right now. I have done quite a bit of research regarding children’s health, and as mentioned earlier have found some things that have helped, but would love to hear from others what they’ve tried, and what has worked for them or not worked well.
Thank you Bob and Mary! I’m so grateful you were willing to come online and honestly share your struggles with us!