Robbie's 2nd Birthday - The One With Regrets (by Erin)

Throughout the course of a lifetime of migraines (which I’ve suffered for longer than I have memories), other illnesses, and of course the Fibro, there have been a lot of occasions I have been forced to miss, even if I was physically present.  They have been laying heavier and heavier upon my mind and soul lately; perhaps if I purge them I will finally be able to move past them.  

One of the events that remains hardest for me to accept is Robbie’s second birthday party.  We had been looking forward to it for so long… ordering decorations, prepping the perfect shades of frosting, shopping like mad…  I was so excited.  I carried the “Cars” theme as far as I could manage.  I loved throwing his parties.  Celebrating the gift that is my firstborn.  My sister-in-law had set the bar so very high for her own children’s parties and cakes and I wanted my kids to love them as much as hers did.  I wanted so desperately to be the mom like her that rocked the parties.

So many people we loved were going to be able to make it; It was also Robbie’s last birthday as a single child since I was pregnant with Lex at the time.  I wanted it to be really special.  (But of course, I want all of his parties special.)

Except when I woke up the morning of the party I was SICK.  I was somewhere around my first trimester, deep within the throws of morning sickness that quite literally never abated, and had one of the worse migraines of my life.  I was devastated. I had done everything I could to be a “normal” mom on that special day for my son… and instead of bearing witness to the games, being the one to decorate, or just watching him playing with his cousins I was locked in a tiny bathroom retching every last drop of bile and the foam of pre-digested migraine medication I had attempted to swallow out of my system.  At that point there was no chance of gaining control.  I have more memories of what the inside of my father’s toilet looked like than the smile on his face while he smushed cake into his face. I remember more vividly the knocks on the bathroom door asking if i needed more ice chips, then I do singing "Happy Birthday" during cake time.

                                    

If you’ve never had a migraine, I don’t quite know how to explain it to you.  I can’t see straight, I can’t catch my breath, I vomit uncontrollably, I can’t keep food or fluids down.  Every noise is a thousand times more vicious sounding than long fingernails scraping down an old-fashioned chalkboard.  My reaction to light nearly causes me to believe in vampires.  I don’t know whether to compare the physical sensation in my skull to exploding shrapnel or a rusty two-ended saw or just the definition of hell.  It can be so intense that it sends your eyes rolling completely back into your head and cause you to lose consciousness from pain.  Heck, the above is a perfect description of a Fibromyalgia flare in addition to migraine... which, I might as well mention now, is often the result of a migraine.

There is little, if anything, worse. (Okay, having morning sickness compounded onto your migraine is a bit worse.  Plus withdrawals from the daily medications that you have been unable to take as directed due to the vomiting.)

Likewise, if you’ve never had Fibromyalgia, I don’t quite know how to explain that it can intensify any pain or discomforts a thousand fold.  What my experience of migraines was as a teenager is no comparison to the total body assault that occurs now as a Fibromite. (Does this happen to everyone with Fibro? No, but do people always present identical symptoms to every condition?  Do people react the same to treatments?)  Whereas most people start a 10-point pain scale on 0 ("Where is your pain… 0 is no pain, 10 is the worst ever?”), I start at a 5.  

Pause for a second and please really think about that one.  Imagine living everyday where your base pain level is what the person beside you feels when they are experiencing 50% of the worst pain of their lives.

Back to the story…. I missed out on the birthday fun.  I missed out on the people. I missed my sister-in-law’s short trip before she returned to Iowa.  I’ve had friends not return to another party or speak to me because of my “behavior” at this one… which only increases the burden of falling ill.  I can’t say I really blame them… I didn’t pay enough attention to them and they think I’m an addict, why would they want to come back?  Excuses don’t matter, in the long run.

I was, and am, blessed to have family and friends that did understand my situation and step up to help so I could manage my migraine and the severe morning sickness until we could get out of there and to the ER.  (The only “safe” and effective treatments I could get while pregnant was in the ER so they could monitor me and tummy-trapped Alex.)  Some didn’t even know I had a migraine; they assumed Fibro was rearing its head and in their compassion jumped up to help.  I’m grateful for those people that took photographs for me, dealt with leftovers, and that realized that I was truly ill and unwillingly missing moments that would never be returned to me… but they tried to keep me as present as they could.  They didn’t judge me for being sick… they made it safe place to be sick.

                     

After leaving the party we had to stop at a Carl’s Junior on the way home… I couldn’t make those extra 4 blocks home.  I barely made it in the door and literally barrelled over the “Wet Floor” sign” before sighting my goal.  We dropped the kids off at my in-laws and headed straight to the Emergency Room without passing “Go” or collecting the $200 (We paid instead, hurrah CoPays!).  It took multiple doses of multiple medications to gain control over the migraine and the vomiting… The doctor said my reasons for “sticking it out weren’t good enough” and I should have come much earlier.

Long after the party I heard the rumors that started and are still flying long after the party.  The easy one to hear was that I was bulimic.  But then they got worse. The real reason, as it has come back to me, is that I was on so many medications for my Fibro I had become a danger. (I was on fewer than ever, at this current point, but more on that tomorrow.)

I was an addict*, pure and simple… And I could no longer be trusted.  My absences during the event were so I could take more medication and get more stoned.  I was out of it not because I was in pain, trying not to heave on people, but because I was lit and getting more so.  My eyes were rolling back into my head not because of pain or neurological functions, but because I was taking dangerous amounts of drugs.  I couldn’t stay awake not because i had been up all night and was fighting intense pain, but because those medications were making me pass out. The icing of the rumor was that I would take those medications and drive in such an inebriated condition….. with children in the car.  (Where the rumors started, or with who, I really can’t say.  But there can be no denying they are out there, because they have come back to me from multiple sources.)

If only people just knew, or would believe, that my stumbling was because of the blurry migraine vision and intense vertigo… that I hadn’t held any pills down in over 24 hours or that anything I did attempt for relief had only made my symptoms worse and I was "as sober as a judge.” 

Or that I refuse to get behind the wheel if I feel even slightly “wonky.”  I probably have stricter guidelines on myself than CHP and/or any doctors would.

Or that I took less than 10% of the narcotics I was prescribed, and had been taking them since 2000 without any of the accused side effects.

But that changes little to nothing.  It doesn’t matter what medication I was taking. The point is that without spreading awareness about what Fibromyalgia and other chronic pain disorders do and the effects of the many possible treatments all of us are going to keep coming up against these devastating situations.  So talk.  Share until you are blue in the face. If we can change ONE mind, that just might prevent the suffering of another patient.

*Although some may consider me an addict, my addiction specialist believes in a clear distinction between "addiction" and "dependancy."  I officially fall into the latter category.



Edit:  My Mom's Response

"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 Amazon.com 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.

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