Living with Chronic Immune Dysfunction Syndrome During Pregnancy

"I feel like my eyelids weigh a thousand pounds!" I remember saying these words to my father during my second pregnancy when he came all the way out to the Northeast, from the West Coast, to visit me. We had spent the day eating breakfast out and searching for movies at the local Blockbuster, but, even those very minimal of activities had rendered me almost completely incapable of functioning for the rest of the week. At the time, my physical health baffled me. A myriad of misdiagnosis, and partial diagnosis, had left me wondering if I was suffering from Chronic Fatigue Syndrome, or Chronic Fatigue Immune Dysfunction Syndrome. Only recently, have I discovered that my weak immune system and chronic iron-malabsorbtion problem was related to my nearly 15 year battle with CFIDS. After a year-long recovering from a hard-fought battle with a rare neurological disease called Gullian-Barre Syndrome, the CFIDS I had first experienced in college, returned.

CFIDS is always bad, but it is the most difficult when coupled with other diseases or pregnancy. While there have been no conclusive (or hard fought) studies concerning the effects of CFIDS on pregnant women, there are some general observations that have been made by medical professionals and CFIDS sufferers throughout the world.

In one local North Carolina practice, it has been noted (though only casually) that about 2/3rds of their pregnant CFIDS sufferers had improved health and energy during their pregnancy and, even breastfeeding. However, once those two factors disappeared, their CFIDS symptoms tended to come back with a vengeance. The general idea around this is that, perhaps, there is greater energy due to the greater blood flow offered the body during pregnancy. Others believe that it is the increase in immune support with prenatal vitamins. Since the understanding of CFIDS is still very much undiscovered, so is the understanding of its effects on pregnancy. So, it stands to reason, that pregnancy, while completely every day normal, is also as equally unpredictable, and as such, there is no concrete, predictors for how CFIDS will effect a woman when she is expecting a child.

However, there are some concret predictors about how deeply CFIDS can interfere with non-pregnant life, and there are some common coping mechanisms that seasoned CFIDS survivors have learned and used effectively. Some of these factors can be integrated into pregnancy to make the ride a bit smoother. I offer some that dramatically changed the outcome of my last pregnancy. I learned to live them even before I knew why I needed to.

1) Be Selfish: Find a safe and reasonable way to balance activity and rest in your life. Even a planned, joyously expected pregnancy, can cause a tremendous amount of added emotional and physical stress on a woman's body. Finding that fine line between when to put your feet up and when to go for a long walk, will be your best line of defense against this sleepy disease. Remember, that CFIDS can make even chopping vegetables feel like marathon-running, so do not undertake an undue physical activity on days when you might be planning a dinner out with your partner or shopping for a baby crib with your best friend. And don't hesitate to leave the house messy, the mail unopened, the couch dented with your day-long impression, if you are tired, or wanting to avoid being tired in order to do something you love, or that you must do. Shop on line, shop where someone can carry your groceries like Wegman's, Acme, or Albertsons), take a friend to the library with you to load up on those good books.

2) Learn the Art of Ignoring: It was during pregnancy, when I still did not know that I had CFIDS, that I learned the art of ignoring unimportant phone calls, the ringing doorbell, or invites to outings that would leave me completely inaccessible for important things for the rest of the week, or two weeks. Your baby will need you soon. Find the most compassionate way to tell your non-CFIDS friends that you cannot chat whenever they call, answer every email immediately, or attend all those playgroups with your other children in tow. If you offer these warnings in love, they will, generally be accepted, if not understood completely.

3) Minimize Labor Pain: Pain can be excessively tiring, even for a perfectly healthy person. Labor pain can knock out a body builder. Imagine its effects on the woman who is working on half the amount of strength that should be alloted for a woman her age. Believe it or not, you can actually avoid experiencing all the pain, all the time. Learn Lamaze. I highly recommend the benefits of learning to redirect your mind during physically painful experiences. Besides having given birth four times, I get chronic kidney stones, and I have learned to concentrate on something else when the pain is tipping me sideways. Take complete advantage of that Epidural. So many women avoid them, falsely believing that they are unnecessarily dangerous. They are quite safe in the Western world, and the only thing that is unnecessary about epidurals is the pain one experiences who refuses to use their aide. They numb from the waist down. Make no mistake, labor pain is one of the most painful things a woman can experience. You can bring some of that excitement of meeting your new baby back into the experience by minimizing the pain. And minimizing the pain will, also, maximize your strength in the long run. Consider it. You can't care for your baby if you cannot even hold up your own head. Labor pain can take away this kind of minimal, necessary strength from a woman with CFIDS who does not minimize some of her pain.

4) Avoid Sick People: One of the most debilitating parts of CFIDS, for many people, is the weakening factor it has on the immune system. I had bronchitis, more than once, with each pregnancy, strep throat, continual bad colds, and the flu. Each time. Each pregnancy. I had a very hard time making my friends understand that I needed them to stay away from me until their cold and flu symptoms were no more. Healthy people can work with a cold, function normally (even if slower) with a cold, but those with weakened immune systems cannot. It completely stops us. In fact, all pregnant women have a less-than-normal immune system. The body naturally puts down some of its defenses in order to welcome the foreign body, that is baby, that inhabits them during pregnancy. So, even the healthy pregnant woman should practice good hygiene and stay clear of the flu. But CFIDS sufferers should be even more insistent about this. Again, I did this when I was pregnant, even before my CFIDS was diagnosed. I only regret that I was not more passionate about it.

5) Ask for Help: Get help from pals and family members during the early days after baby arrives home. The healthy, non-CFIDS mother is often completely exhausted after nights of little sleep and breastfeeding every hour on the hour, but those with CFIDS are often totally wiped out. To even dress themselves, brush their hair, or hold their new baby, can sometimes be completely out of the question. I remember the shock of observing my other friends who had just given birth, and how most of them seemed so much more energized than me. And none of them were drinking copious amounts of caffeine, taking industrial strength vitamins, or getting. We were all, essentially, do the same thing, having similar experiences. Still, they were just so much better off than me. I could not even breastfeed for more than two weeks, due to the physical drain of my first baby's hourly feeding.

Let your friends know this might be your situation. Get your pals to come over and help out when they can. Make them feel welcomed. Thank them profusely, and return the favor with your smile and the explanation that you cannot promise that you will reward them with your physical help, but you will give them whatever you can, however you can. And build a bridge of trust for them to return and help again if you need it. But give them your ear, your advice, your prayers when they need it. Being a good friend will draw help and love to you. And CFIDS requires that you take advantage of that help and be open to that kind of selfless, serving love.

No matter your level of CFIDS, or pregnancy, you can use the above tips and see a difference. But, remember, nothing replaces a doctor's advice. Take your concerns to them, and allow yourself the opportunity to feel the joy of your upcoming baby - whatever your circumstances. Don't let CFIDS determine your baby experience.