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.


Sunday, June 12, 2011

Finding the Silver Lining through Anger

I've been going through a lot lately, and having a hard time organizing the thoughts within my head. I have 5 blogs I'm working on right now... all of which I've stopped in the middle of with no clue where to go from there. So I thought that maybe those just aren't the avenues I need to be investigating right now... Brandi has told me I need to relax and chill out... so I am just going to release and see where it takes me.

I've been experiencing a lot of anger lately, primarily directed at myself. I am so furious at my body for being a willing host to fibromyalgia... and now that I have an official diagnosis for chronic fatigue as well, I'm doubly angry. Some of this might stems from the day that I found notes from a doctor visit from when I was 17... where my pediatric cardiologist suggested that I probably had CFS. My brain almost exploded when I found this particular piece of paper. I was amazed that it had been pegged so long ago and then just forgotten about, although the symptoms never really went away. I can't blame anyone for this except for the doctors. My parents did everything they could to try to figure out what was wrong with me; they took me to doctor after doctor trying to find a reason for my fevers, my aches and pains, and my overwhelming exhaustion. Fibromyalgia and CFS just were not diagnoses that doctors were willing to tack on someone that young. We kept searching, but never got an answer that two doctors would agree on. I am now furious that the doctors didn't take things one step further... instead of playing hot potato with me.

I am also angry with myself for the things I cannot do. I can't take care of my child on my own for 4 days in a row without calling help, when I used to be able to take care of 4 babies his age 5 days a week without any help. I can't throw my sister-in-law a baby shower. I can't do daycare for my niece when my sister-in-law goes back to work (this one hits really hard, since I'm as proud of being an aunt as being a mom!). I can't go to all the baseball and soccer games my nieces and nephews have. I can't drive out to see them all the time like I used to. I can't go camping with my husband, who wants to go camping more than anything. I can't get on an airplane to join my parents in Hawaii, I can't go to my cousin-in-law's wedding because I can't survive the travel. I can't cook a meal without collapsing after. I can't spend a day at the zoo without the next 3 days to recover. I can't get a massage without feeling like I was hit by a car for the next 2 days... no matter the amount of pressure or techniques used. I can't vacuum and mop in the same day. I can't do laundry without spending that evening in tears. I can't always make love with my husband without it causing pain throughout my entire body. I can't even always give him a hug when he gets home from work.

I am angry that my parents aren't in the best health, and I can't take care of them. At almost 26 years old, married, and with a child, they should be stepping down as my caregivers and I should be picking up the role of being theirs. But I can't, because I can't even take care of myself. I am angry that my body has me sitting on the couch while I watch my mother, who has been through breast cancer and decades of chronic pain, peeling potatoes for dinner. I am angry that I depend on her for help when it should be the other way around. (Not that I want her dependent on anyone... but you get where I am coming from...)

I am angry that so much of my husband's hard earned paycheck just disappears to CVS... that every month I go through about $50 worth of epsom salts and over $250 of prescriptions, supplements, vitamins, etc. I am angry that I cannot work to help pay my own bills. I am angry that I have to get a lawyer in order to have a chance at receiving the disability benefits I earned by starting work at 15 years old.

I am angry at the mounds of dust on the Entertainment center that only get wiped away by my son's little hands. I am angry that he has clumps of my hair stuck between his toes, and cat hair stuck to his drooly little face because I haven't been able to move the vacuum. I am angry that it hurts to feed him. I am angry that my pain often makes my temper short. I am angry that I am not going to be able to be the type of mom that will kick a soccer ball around with him and be able to play tag. I am angry that after he gains about 10 more pounds, I will probably be unable to carry him or even pick him up. I am angry for all the ball games I might miss, the trips to the park we will have to skip, and the amount of time we will spend resting during each excursion.

Most of all, I'm angry that I'm so damn angry.

I know that these feelings aren't doing me any good. That's one of the reasons I started The Silver Lining in the first place... I have a tendency to hold tightly onto the negative and reject the positives. I don't like that about me. I want to change it. I want to see the good at least as clearly as I see the bad.

So here goes.

I appreciate the fact that being so sick all the time has brought my husband and I closer. We know that we can weather the bad together, because that's what we've been doing for more than half of our time together. I know that he can and will take care of me... and that I can count on him to do the best he can to make me feel better both physically and mentally. I know how much he loves me because of how hard he tries to fight the CFS/Fibro for me and with me. He is a Fibro Fighter every bit as much as I am... and when things gets tough... he gets as tough as I need him to be.

I know that my illnesses are not negatively impacting my son. (Although in the back of my mind I hear a quiet voice whispering, “yet...”) I know he knows that he is loved. I know he loves me. I may not be able to toss him in the air, but that doesn't mean I can't make him giggle and laugh. I may not be able to chase him around the park when he's three, but I can push a swing just fine! And being unable to work means that I get to watch every new little skill and hear every new sound. I get to hug him all the time... and when he doesn't feel good we get to lay in bed and watch Elmo together.

The money situation is hard... but at least I got a lawyer to take the case (and the stress) for me. I have someone in my corner to fight for me when I don't have to ability to form words. And until I get a favorable judgement, we'll survive. There is food in our bellies, clothes on our backs, and a roof over our head. I don't have to worry about my son going to bed hungry. I'm grateful my husband has a stable job with excellent health coverage. I don't know how we would survive without.

I try to tell myself that even though I have a messy house, it could be far worse. My son may get covered with hair, but he certainly does not live with filth. It still gets vacuumed at least once a week, and since the baby isn't allowed anywhere that needs to be mopped, that's not a huge deal. His bottles are clean, and he has a safe place to play and sleep. A little hair never hurt anyone, right? I've seen children raised in far hairier places than my home come out just fine. He is healthy, and his pediatrician says he is “above average” with all of his skills. And so what if I can't chase him around the park? His daddy can do that..... or a cousin or uncle or auntie. I may not always be able to play Rocket Ship, but he still loves me with his entire little heart.

And although I can't take care of my parents the way I'd like to, I at least spend more time with them and share more laughs with them than most people my age spend with theirs. They see their grandson once a week at the very least... and Roo has an incredibly close relationship to both of them and adores them. I do what I can for them, and they do what they can do for me. I can honestly say that I can call my Mommy my best friend in the world. There is almost nothing I feel I can't talk to her about or share with her... and part of that is due to our bonding over our chronic pain. I am proud to be a Daddy's girl and know that those arms are equally as open to me as they were when I wore pigtails. He has never doubted me when I said I didn't feel good, and has always been my favorite (although tough) nurse. Without him behind me, I don't know if I would have had the strength to push for a diagnosis... and I don't know if I would know how to if I hadn't watched him be my champion for all of these years.

So yeah, I'm angry and have every right to be.... but you know what? After re-examining only a small portion of the Silver Linings in my life I have to admit that the anger over all the little stuff just doesn't measure up to the power of the good stuff. So I'm gonna let the anger go. I don't need it anymore.