Wednesday, June 22, 2011

"You've got Fibro and a BABY?!"

There's one question I seemed to get asked more than anything else: How the heck are you raising a baby with Fibromyalgia and CFS? I don't really have a good answer for this one except that you do what you have to do for your child.

One of the most heartbreaking moments of my life came one morning when my son was about 6 weeks old. That day I got out of bed and I ACHED. I knelt on the floor in tears, my face buried in the comforter, sobbing hysterically. My husband woke up and asked me what was wrong... and all I could saw was “It's back. It came back...”

You see, I had hit nearly complete remission while I was pregnant. My pregnancy wasn't entirely easy, but it was very probably the best and easiest time of my life. So much less pain... everything that was wrong could be easily treated... and everything I went through was “normal.” I didn't feel like a sick freak with a weird disease, I felt like a human. Since I had been told by a few doctors that pregnancy could very likely cure my Fibromyalgia and make it go away forever, I hoped and prayed that would be the case for me.

It wasn't. Once the aching started, it didn't take long for my other symptoms to return. They built up slowly... gradually returning me to the state that I had been in before conceiving. I began to wake up stiff again. I began crying when I tried to get my clothes on in the morning. I began to be frozen in pain for the first and last hours of the day. (I know now that a lot of this was due to CFS, which I had not been diagnosed with yet.)

This time around I was very active in treating my pain. I took my pills like a good girl... I didn't skip or try to make do nearly as often as I did before having a baby. I had to function for him, which meant I had to take the pills for him. (Although within a month I had completely run out of my pain medication, and my doctors refused to give me any more... but that's another blog...) I tried to nap when he napped. I let the pile of dishes pile up to the kitchen sink, forcing myself to leave them there instead of wearing myself out even more. I knew that if I didn't take care of myself, I would be unable to take care of Robbie. To be a good Mommy, I had to be good to myself and damn the housework so I had the energy to do it.

I think the biggest thing that helps me is going to bed at night and not staying up all night to read. That's really hard for me to accomplish... I usually am glued to my Nook until about 1:30am when I just can't keep my eyes open any longer. While I'm reading, I know I should be going to sleep to rest up for the next day, but it's just too hard to stop. When I read there is no pain.. because I'm not me, I'm a character in the book. Escaping is much more seductive and enjoyable than sleep, no matter how tired I am. (Hi, I'm Erin and I'm addicted to reading....) However, if I go to bed like a good girl around 9:30 or 10pm I usually have an easier time of it the next day. I won't claim that I always do that, though.

Another thing that really makes a difference is how and when I wake up. If I open my eyes naturally, I can expect a halfway decent day. If the baby wakes up at 6 and won't go back to sleep, I'm in for a pretty hellish day. Mornings were a lot easier when he was little enough to happily play in my bed for an hour while I allowed my body to slowly wake up and give the pain dullers time to kick in. The longer I could stay in bed, the easier my day would be. On many mornings my husband would bring coffee to me in bed, and Robbie and I would just chill and watch an Elmo DVD while playing with the toys we store in our headboard until I was ready to get up. Now that he wants to be up and playing within a 15 minute span, I don't have that luxury anymore, although my husband tries very hard to let me stay in bed until he has to go to work. Now the best thing I can do for myself is swallow my meds on the way to the kitchen to feed him his breakfast while I try to loosen my muscles up as much as possible. And gulp that coffee.

Sharing my epsom baths with Robbie after they had cooled enough for him has been one of our favorite ways to bond, play, and manage my pain at the same time. Mike has come home many times to find us giggling in the bathtub while we soak away my aches. Sometimes we just hop into a hot shower – my back blocking the spray from hitting him while he plays on the tub floor (this is usually the only way I end up getting a shower, too...).

We have made a lot of concessions to my pain while purchasing baby gear. I have learned to shop for strollers and car-seats during a flare to make sure I can manage them while in bad shape. My son is 8 months old and we are already on our third stroller, simply because I couldn't lift his infant seat onto the infant seat stroller anymore. I made sure that each stroller could double as a walking aid for me as well and that it would support my weight if I had to lean heavily on it. Our current “daily” stroller is about 10 lbs, and I can lift it with my bad arm on the most painful of days. We also have a second stroller for longer walks and Disneyland trips... I cannot lift it a millimeter off the ground, but it makes a very comfortable walker for me and has enough basket space to carry whatever I need with me.

Thanks to hand-me-downs, I have collected a rather impressive array of baby-wearing contraptions... but there is one carrier that I fell head over heels in love with. The Mobi is just a really long length of soft jersey fabric that is incredibly comfortable and doesn't put painful pressure anywhere on my body. I call it my Fibro-friendly carrier... because it doesn't add to the pain that's already there while making it easier to carry Robbie around the house or through the grocery store.

The hardest part of being a Fibro Mom is when your baby is lying on the floor crying, and you lack the ability to bend and strength to pick him up. You have to inch-worm over to his side and lay on the floor with him in order to pull him to your body and comfort him... because you know that if you try to pick him up you will probably drop him. Robbie is slowly learning that Mommy can't always pick him up, and loves cuddling with me on the floor. I will be investing in floor pillows very soon in order to make playing with him more comfortable as well.... laying on the floor tends to hurt after a few minutes.

One of the more positive aspects of having a kid is that it is a lot harder for me to retreat to my “cave” during a flare and not leave the apartment for days. I just don't have the option anymore. But I am extremely motivated to do everything in my power to keep my health from sheltering my child, so we go on walks whenever I can push through the pain in order to show him the world and give him fresh air and new stimuli. Although I suffer increased pain after our walks for at least 36 hours, I do it for my child... and his enjoyment is a pretty decent pain-duller in itself.

There are a few other things that really seem to help things be easier. I recently switched to Drop-In bottles, because it was getting to be just too much to stand at the sink for half an hour before going to bed to scrub that day's bottles. I order diapers from and have them delivered automatically every month... and save a bundle by doing it. I try to team up with my mom as often as I can when I run errands, or wait for my husband to go with me. I make an obscene amount of lists to prevent Fibro-Fog from taking hold. I take full advantage of Robbie's fascination with Elmo and the rest of the Sesame Street gang so I can lay on the floor while my medications slowly work their way into my bloodstream. I see my doctor monthly in order to fine tune my medications and come up with new ideas that may help me. I always take my vitamins and controller medications.

The hardest for me is to ask for help when I need it... as hard as it is to admit to weakness, it is easier to swallow my pride and have someone help carry the groceries or come play with Robbie for an hour so I can lay down than it is to manage the flare that is guaranteed to happen if I don't ask for help.

And, of course, my husband is the biggest help of all. There are no words to express the relief and surge of love I feel when he says “Yes, honey, go lay down and take care of your pain” or says we can once again have mac'n'cheese because he knows I hurt too bad and am too tired to cook.

It's incredibly hard to have a baby. It's also incredibly hard to have Fibromyalgia and CFS. But to have all three still seems like an impossible task. Each night when I go to bed I stare at the ceiling and wonder how I got through the day. I take inventory of my body, amazed at how I managed to take care of my son with the amount of pain that I had been in, and as tired as I was. I lie there in fear of what the next day will bring in the same breath that I hope it will be a better day... knowing that the only way it will be is through the grace of the Gods, a heck of a lot of pharmaceuticals, and with a hell of a lot of help from my husband during the hours he would be home.

But ya know what? The smile on that little boy's face and the look in his eyes when he sees me is worth every single ounce of pain it takes to make him happy and cared for. And I can honestly say that I am proud of myself for being able to do both of those things. Fibro and CFS will NOT stop me from being a good mommy... and I'm DAMN proud of that.



  1. You are so inspiring! Thank you for sharing this for all of the fibro moms-to-be out there!

  2. Wow, that is EXACTLY my experience too! My daughter is now 8yrs and over the yrs have had to cut back and kind of admit defeat as I went back to work pt, which i eventually quit, but I think it was too little, too late. I also have his mum local and it took us a while to come to an agreement but she has her after school on a monday and will do anything extra if I ask. I am getting better at asking. But as my mum use to say'you don't ask, you don't get!' I wish I had done it sooner, and taken every cut corner in the book, like food in jars, ready kids meals; they are organic after all so don't feel guilty- we all do the best we can, but if you don't look after yourself, you are not able to look after yr family. so take good care; and IT DOES GET EASIER. so sit back and try to enjoy what you can, 'cos when it's gone it's gone! I look at my daughter and wish i had enjoyed the early yrs more- only its such a fight to get through the day, so take care and try to enjoy. x