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

Friendships

I've spent a lot of time in the past few weeks reflecting on relationships, and how Fibromyalgia and CFS (and other chronic illnesses) seem to be a death sentence for them. Mostly, I've been thinking about how strongly illness affects friendships.

Growing up I never really had many friends... and what friendships I had never really lasted longer than a week or so. Since I was always sick, it was really hard to create a friendship with someone who didn't understand my health, and therefore I've always only had one or two friends at a time (The same ones from fifth and eighth grades, too). I ended up collecting quite a few online friends by the time I was 13, and found myself to be more comfortable with them than I ever had been with anyone in person... there was just nobody “in real life” that got me.

A few years ago I thought I had it all figured out. I had a few close friends surrounding me and I spent countless hours with them. I was really happy. I felt loved, special, and like a normal person. There were people that wanted to me around me, and it was WONDERFUL. My self esteem skyrocketed, because I mattered to someone. Someone thought about me when they weren't with me, cared enough to try to make me laugh, and would come visit me if I wasn't feeling well. People were willing to make the adjustments required by my health in order to have me a part of their lives, and vice versa.

But then sick 'ol me got even sicker.

When Fibromyalgia became the boss of my life, I couldn't even maintain the few relationships I had anymore. Everything around me crumbled, and the friendships that I had worked so hard to develop and nurture took a violent crash into the abyss. I couldn't hang out, I couldn't go anywhere, and coming to my apartment and watching me writhe in pain was more than most people could handle. (Although not many really tried... I admit I do have a couple "real life" friends that have been very supportive of me, especially lately. They know who they are, and how much I appreciate every bit of effort they put into taking care of me.)

Of course, there was also the unspoken trend of “This is BS, Fibro isn't real, all she needs to do is get off her duff and things will be better, blah blah blah” from the people in my life with imaginary medical degrees. Anyone that said “Push through it” and “Suck it up, everyone hurts” was making a choice not to be a part of my life by refusing to learn about what I was going through. Most of these people I ended up having to remove from my life all together because their callousness was toxic to me. Some just couldn't handle seeing me in pain, and slowly backed away, saying that we could resume our friendship when I was better (which we know is pretty much “never.”) Once again, I was alone.

After being a member of a support group on Facebook for a few months, it hit me.... I was trying to develop and maintain all these normal friendships with all these normal people who I had very little in common with anymore. I was making myself miserable by the constant reminders of what I couldn't do and couldn't have. I cried constantly because friends were going to the beach and I hadn't been invited (not that I could go anyway, but being thought of would have been nice...).

The support groups first taught me that I wasn't alone. There were other people who were in the same situation I was.... they had the same health problems, they spent days in bed because the pain was too bad to move, they took 3 baths a day, swallowed handfuls of pills, and were as lonely as I was. It was nice to have someone to talk to, but I still felt like my life was lacking. I was still lonely, although less so, and I was still every so depressed because of it. My fellow Fibromites were great acquaintances, but I still didn't really have friends.

Then it hit me. Why the shouldn't I put all the effort I had been using to mourn my dead friendships into developing new online friendships like the ones that got me through my teen years? It's not like I can go anywhere or have a normal friend relationship since I'm so unstable right now. But these women in my support group... they really got it and knew what I was going through day to day. And when I met Brandi and Torill, things started to change for me really fast... especially after launching the Silver Lining of Fibro support group. I began feeling like I had worth as a human being again, that I was valuable, and loved, and needed, and special.

Because of the experiences Brandi and I have had with our personal friendships and fibromyalgia, our “mission” was to create a support group that would be a group of friends, rather than a bunch of random women complaining that they hurt all the damn time. It would be a place to talk about our kids, our horrible experiences at the grocery store, but mostly to learn how to have a real life while living in pain. As our ties to each other have become stronger, we've taken them offline – creating a snail mail club, making each other's phones blow up with texts... and for a lucky few that live close together, planning get togethers and lunches. Since our members are around the globe and we are all a bunch of insomniacs anyway, there is always someone we can talk to, to cry with, or to make laugh. There is always someone to send us a mental hug.

Recently my depression came back again, with its gaping toothy maw open and ready to eat me alive. I felt lost and extremely alone. My husband realized I hadn't talked about “the girls” in the last few days, and he asked me if I'd been talking to my support group lately. I realized I'd been hiding from them... trying to keep my depression from leaking out into their lives. (Something I frequently yell at the other women for doing.) I took a deep breath, got online, and confessed my emotional state. Within seconds I had two texts and a flood of messages from my new friends asking how they could help me, trying to set up a lunch date with me, and just saying “I love you. Stay strong, you'll get through this.”

Each message was like a ladder rung, giving me the support I needed to climb out of the hole. Yesterday morning I woke up and the world was bright again... and I knew I was gonna be okay.... simply because I had rediscovered the Silver Lining to my Fibromyalgia... FRIENDS.

Marital Guilt

It hurts to have Fibromyalgia in more ways than may be obvious at first glance. I believe that Fibro creates even more emotional pain than it does physical. Nothing reaffirms the emotional pain more than my husband's eyes when I see all hope crash and burn whenever he comes home and finds me still hurting.

There is always the space of a breath after he asks me how I feel where I have to make a conscious decision between confessing my pain or keeping it to myself by avoiding the question or lying. I know that if I decide to choose honesty I will see that look of disappointment and pain, and feel horribly guilty for being the instigator of those feelings.... especially when he comes through the door after work smiling and one look at my tear-stained face wipes the smile off his for the rest of the night. There is no way to deny that I am the cause of his pain, even if I'm not causing it on purpose. There is no way to deny that my Fibromyalgia ruined his happy. How can I not feel guilt at this?

Sometimes I've been in a flare for so long that when I tell him that I hurt, his only response is “What's new about that?” That's as hard to deal with as the look in his eyes. It forces me to remember how much time we have lost with each other because of the pain or fatigue. I know that his anger isn't directed at me, but at the disease... but I still feel the guilt for being the host of the disease.

If I choose to try to protect him from the truth I will pay a heavy price for the strain of trying to carry the lie... and in the long run, I most often fail miserably. The fact is that the better job I do of hiding the pain, the higher the price I will pay, the longer I will be paying, and the sooner I will have to pay it. And I usually try to hold on too long.

On my husband's birthday I held on as tight as I could, determined to make it special for him and not let my Fibro kill yet another BBQ. That night I broke down and the pain I'd been pushing away caught up to me like Arnold's secret son. It's a good thing the next day was Mother's Day and he had already planned to wait on me hand and foot, because he probably wouldn't have had much of a choice. That flare ended up lasting two weeks and making my husband pretty damn ticked I stressed my body out that badly... and making him feel guilty that I cause myself pain for him.

The really sucky part is that no matter what I choose, we are both going to lose. If I tell the truth, he's unhappy, and I feel guilty, and then he feels guilty because I feel guilty. Or I don't tell the truth, and I'm inevitably caught, making him feel guilty for making me feel like I have to lie, so I feel guilty, and so on, and so on... until we're both just walking people-shaped sculptures of misery and guilt... alternately sharing our feelings and then keeping them secrets... and keeping the cycle of guilt and frustration going.

I know what's probably going through some of your minds, because I've had those thoughts too. I'm the one that's sick, he should be extra careful not to upset me and stress me out further.... he needs to keep a tighter lid on his emotions and he has no right to be angry..... WRONG!!!!!!!!

No one ever grows up saying "I want a sick wife, a pretty much nonexistent sex life because she hurts too badly to make love, to go to work every day while she lies in bed popping pills and then to come home and take care of her, a kid or two, cook dinner, put them all to bed, and try to find the energy to clean up after holding basically 1 full time and 3 part time jobs... while never having any money to spend on myself because all the extra ends up going to medical bills.”

I am not the only one that saw my future darken with my diagnosis. He may not feel the physical pain of Fibro, but he feels the emotional toll of it as deeply, if not deeper, than I do. He is even more isolated than I am... because who really understands what he is going through? I at least have support groups and friendships with women in the same situation I'm in. Like most men, he feels a strong responsibility to protect and take care of his family, but there is no way he can protect me from my own body. He can't fix me... and each moment is another reminder that he's failed to keep me safe.

He tries so hard to hold in his frustrations. I am in awe of that strength... I don't think I could do what he has done for me over the course of our relationship. He is an amazing husband, a wonderful father, and a fantastic friend. He is an amazing caretaker and nurse. But his guilt is tangible when he reacts sarcastically or with anger to my pain.... Or when he "allows" me to push myself too hard.... Or when he knows that I caught that heartbroken look when he gets home from work and asks how I'm doing and I am not able to tell him I feel amazing.... Or when he's massaged me for so long his hands hurt and he has to stop.... Or when I tell him there's nothing he can do. And I think that that's a big problem... because it's totally okay for him to have those feelings. It's human, and it shows that he cares about me... because if he didn't he wouldn't get so upset.

But we can't live like this. I can't lock myself in the bathroom with the shower running to cover the sounds of my sobs when he gets home, like I did only days ago. I can't continue to have warring emotions when he comes home... part of me desperate to see his beautiful hazel eyes smiling at me and feel his arms around me in a tight hug, but the rest of me knowing that what I will actually see is those eyes darken in disappointment when he realizes that tonight will be another one where he is unable to relax. He needs to be able to express his feelings about my illness and what my being sick means for him. And we need to stop keeping our negative emotions secret and bottled up.

The only way to fix things is to really focus on communication. Maybe over sharing would be beneficial for a while, until we get used to not bottling up. Maybe if we let it out, it won't really be a big deal anymore... and we'll be on a better track to individual and marital health. I know that if we don't, Fibromyalgia is going to drive in a wedge that may never be able to removed, and I find that to be completely unacceptable.

How do you all keep your relationships healthy? I know both Brandi and I are eager to hear what works for others.