Tuesday, April 5, 2011

Some Days Are Painful

I'm trying to remember when my health took a nose dive during my last pregnancy. By taking a nose dive, I mean having the type of Lyme flare-up we all dread. The pain, fatigue, brain fog, or whatever else you've experienced throughout the course of the disease can all pick up again and put you out of commission for a while. I believe it was around 28 weeks for me. At thirty weeks I had some last minute improvement, but by the time 36 weeks came around, I was so ill that I had to deliver early.

I get email asking about this all the time. "I want so badly to have a child, but I'm afraid that once I'm pregnant, I'll relapse and be set back for years."

Here is the truth: The fear you have about this is far worse than what will actually happen to you. I'm not saying this will be a picnic. If you're unlucky and you do have a flare in symptoms, it's probably going to suck. A lot. You will have days where you wonder if you're going to make it, or at the very least, if getting pregnant was a good idea.

I promise you, these feelings and symptoms pass. All of the women I've talked to had it in their heads that the flare-ups would be some kind of permanent setback--like life would be over. Fortunately, it doesn't work that way, however, it might take some time to bounce back. NOT the end of the world.

Another common email I receive: "Oh my God...I feel SO sick. It's been three months since I had the baby, and I'm not getting better. What should I do?"

All I can say to this is try and relax. Of course, no one wants to be in pain, but three months is hardly a blip on the map of your life. Put it this way, if you've had kids before, you will probably remember when being pregnant seemed like it was a permanent state of being. Those nine months lasted forever the first time around, and every detail of your pregnancy seemed so important. You might have even accepted the fact that you were going to be a big waddling blimp forever.

But alas, the weight comes off, and little by little your old pants pull up higher over your hips. You adjust quickly to an even more different kind of life. The nine months you spent pregnant will seem like a quick, distant memory (Wyatt is 8 months old, and I already feel like it was ages ago).

So really, it will suck for a while, but the Lyme pain experienced after birth passes. You just have to be diligent with your treatment and learn to have patience.

I am reminding myself of this daily.

Currently, I'm very sick (which explains the absence and my slacking off at returning emails). I expected a decline in health to happen, though I viewed the upcoming struggles with much less anxiety because I already know what's ahead. Unfortunately, this flare-up is happening at 21 weeks and not 28. I'm a little ahead of schedule.

I know we all experience our symptoms differently and to varying degrees, so it's hard to tell someone, "Oh, you should prepare for this during your pregnancy flare-up (if you have one)." I can only tell you what I've experienced.

If you remember, I spent my first trimester feeling better than I had in ages. It was quite a relief to have some energy, feel like a "normal" mom to my son, run errands, and even have somewhat of a social life again. Slowly but surely the extreme fatigue crept in. Usually, the red flag goes up for me once I notice that I need a bunch of naps during the day to prevent a mental meltdown, twitching, and numb limbs.

Once the fatigue happens (I'm talking fatigue that makes it nearly impossible to lift your arms up or head from the pillow), things go one of two ways: I wait it out and rest for a few days and regain energy, or I decline to the state I'm in now, which is pretty pathetic and pain-filled.

I hope this doesn't come across as whining; I'm really trying to paint an accurate picture of what my days have been like in hopes of helping others decide if they're ready to make the baby commitment. (Again, you might have a different experience. If you feel like sharing it, please do in the comment section below).

So, as I mentioned, lots of fatigue. When I wake, it takes a good thirty minutes before I start to feel my hands and feet at all. My limbs are also weak, so I stay in bed and get acclimated for a while. My husband holds and cares for the baby during this time, as I'm afraid of dropping him. Sometimes if Mike has to leave early, he puts the baby in bed with me until I can get up and start the day. Wyatt crawls at lightning speed, but so far he's far more entertained by sitting next to me, smacking my face and pulling my hair than he is bolting off the bed, so we're good for now.

The baby naps at ten. I nap at ten. He naps at two. I nap at two. If I don't, the painful electrical current running through my body gets out of control. The sensation is like I am being jolted or electrocuted from the inside 24/7. Sometimes it's just mild but annoying, as if your arm has been asleep and is tingling as the blood returns. Sometimes it's so intense, I have to meditate and try to get out of my mind, because I can't tolerate being in my own body. I have not found a medication that helps with this nerve pain, especially one that's safe during pregnancy. Last night I dreamt that I dropped a hair dryer into the bathtub and electrocuted myself--nerve pain has officially followed me into sleep territory. By the way, this neuro stuff comes from the Bartonella.

Three days ago, I lost all feeling in my legs and couldn't walk. My parents helped me out with Wyatt. Eventually, I regained mobility, but it comes and goes. My hands also turn into little claws throughout the day, and I can't feel or use them either. During these times, the little guy is great about playing in his pack and play or in his activity center. For the record, we have two pack and plays, and would have one for each room if we had the space or money. They are God's gift to Lyme moms.

I'm having convulsions at night that aren't quite seizures because I can remember them, however, they look like them and are completely out of my control.

Finally, the Tourettes-like twitches, tremors, Bell's Palsy, poor circulation, blurry/double vision (no driving--booooo), migraines, blood sugar drops, and racing pulse are all back again. There's more, but I'm starting get tired of typing all this.

There are two reasons why I haven't jumped off a bridge yet. OK, make that three: 1. I have children and a husband to love and take care of. 2. I know this flare-up is SO temporary and not like the days before diagnosis where the dark times lasted forever. 3. I felt like this last year during pregnancy and lived to tell about it, and I've been through worse before.

I also know that this could subside at any time--it's all so unpredictable--maybe my third trimester will be tolerable.

My doctors aren't as optimistic about this as I am, and they've moved my due date from August 18th to early to mid July. I love that they are looking out for the baby and me. As much as I don't like the idea of evicting my kid, part of me is so relieved that I now only have about 3 months to go.

There's that magic three months number again. A blip on the map of my life, right? It will all be worth it.

*Sorry if this post is all over the place and peppered with bad grammar. I don't have it in me to really edit this time around.


  1. Hang in there sweetie, 3 more months!! I'm super excited for you and baby #2, you are an inspiration to all of us lymies out there. Maybe someday we'll get to meet each other in person:) xo

    P.S. You've convinced me to register for two pack-n-plays, thanks for the tip!

  2. Thank you my dear! I'd love to get together someday. Our kids can be friends, too! :)
    Get those pack-n-plays, especially if you have two floors in your house! We have one for upstairs and one for down, so I don't have to do stairs all the time.
    From day one when Wyatt was first born, the pack-n-play served as a crib for napping, changing table, and play area. It's light and pulls right up to the couch. Now it's a safe play area for when I can't hold him or I get tired of chasing him.
    Exersaucer is another must have. Bulky, and obnoxious looking, but he loved standing in it and would play happily with the toys for a LONG time. Easy for Lyme moms to sit next to the baby on the floor an interact without having to exert too much energy. Everyone wins.
    Someday I'm going to make a list of all the things that have helped us get through the rough periods.
    As soon as I'm not pregnant, I'm going to add a cocktail or a glass of wine to that list. I don't care what kind of symptoms it kicks up. I need a friggin' drink. hehehehe

  3. I'm at 32 weeks and the fatigue is so bad I can't bath myself, my muscles are stiff and I have strong jerks in my arms and legs I can't control, along with the racing pulse I feel I'm going insane with all the pain at times my hands and feet go numb threw out the day and I haven't found a doc in my area that specializes in Lyme yet especially during pregnancy....so they say it's my anxiety or something else when I know it's a Lyme flare, I pray for guidence and strength as I finish out these last 8 weeks....sincerely jenn


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