I’ve been doing a lot of reading over the past few days, struggling to make sense of a diagnosis I received several months ago that is only now beginning to become real. My first thought upon being told I had fibromyalgia was yeah, whatever. I know one or two people that have fibromyalgia, and sorry, but that’s not me.
I mean, look at me. How could someone that chases a three year-old around all day, and plays volleyball four times a week, and tries to get in 10,000 steps a day, and is almost through with a pretty stout master’s program…how could that person have this illness that sends these other people I knew to bed most of the time? Or did I just have a really poor conception of the illness?
It became rapidly clear to me, though, as the diagnosis started to sink in, that if I were having trouble rationalizing it and making it mesh with the Lori I knew myself to be, that certainly those around me would also be having trouble doing so. Especially since the question on everyone’s lips seemed to be “what exactly is that, anyway? You don’t look sick?”
I didn’t have a good answer for anyone, including myself. My rheumatologist hadn’t really given me any information about what to expect or how to proceed with my diagnosis, beyond trying to get a good night’s sleep in order to better heal my nervous system. In the early days and weeks I was constantly on the internet trying to get a handle on exactly what fibromyalgia was, even. I felt so ignorant. All I really knew is that it had something to do with the weird pain I had been experiencing, and the chronic fatigue that didn’t really seem to have a source. But I couldn’t figure out what caused it, or how it was successfully treated. The internet was full of alternately vague and/or repetitive information that was only moderately helpful.
Claudia Craig Marek’s book Fibromyalgia: A Patient Expert Walks You Through Everything You Need to Learn and Do the First Year, though, turned out to be a goldmine of information as well as a confirmation of a myriad of symptoms I had not even realized were part and parcel of the syndrome. Fibromyalgia affects a number of different systems of the body, hence the “syndrome” designation. It is comprised of a host of musculoskeletal symptoms that you may or may not experience, such as widespread, aching pain, stiffness in muscles, tendons, and ligaments, TMJ, headaches and migraines, restless leg syndrome, and joint pain. There are central nervous system symptoms, such as insomnia and non-restorative sleep, irritability, anxiety, depression, apathy, and impaired memory. Fibromyalgics can suffer from IBS, genitourinary syndrome, skin conditions, hair and fingernail issues, eye issues, allergy issues…the list seems endless.
Reading all of this, on the one hand I felt vindicated. YES. I was not crazy. I was not a hypochondriac. This was stuff I had dealt with since I was a child–particularly stuff like IBS, dry skin, brittle nails, allergies…things I hadn’t even attached names to. On the other hand, though–what did this really prove? Scientists still had no clue what caused fibromyalgia, or how to cure it.
Craig provides a letter to help explain this very difficult to explain illness to family and friends, in words that are much better than any I can come up with.
“Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia, though they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. …
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That’s just the way it goes.
There’s no cure for FM; it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I am getting better, because I struggle with chronic pain and fatigue for which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning; I may just suddenly feel awful. I can’t warn you when this is likely to happen, because there isn’t any way for me to know. Sometimes this is a real spoiler, and I’m sorry.
Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around your body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pan. Sometimes I just hurt all over.”
Besides pain we have muscle stiffness, which is worse in the morning. Sometimes when I get up out of a chair I feel like I’m ninety years-old. My fingers are stiff and my coordination is off. I walk slowly up and down steps because I’m stiff and honestly afraid I’m going to fall.
Because I feel like crap most of the time, I’m usually pushing myself to get stuff done in the times I feel somewhat normal, which means I’m usually pushing myself too hard. When I do this, I pay the price. Usually I end up compensating by getting sick or needing to rest for days afterward because I have expended too much energy.
Another symptom I have is problems with memory and concentration, dubbed fibrofog. Short-term memory is the worst. I am constantly looking for things I’ve misplaced, walking into rooms and not remembering why I’m there, leaving my to-do lists sitting on the counter, forgetting appointments, and forgetting what someone told me ten minutes earlier or just the day before. This is apparently pretty normal for fibromyalgics. I was worried I was getting Alzheimer’s.
Then there are the sensitivities–to heat and cold, to noise, to bright lights. To certain smells, like fish, chemicals, or perfume. They make me physically ill. …
So there’s that. Will any of us ever really understand what we’re going through? Doubtful. But knowing some of what we’re facing can give us all a little more patience, acceptance, and love to make dealing with it–on all sides!–a little easier.
I think my Facebook posts over the past couple of days will say all that needs to be said about my totally awesome and enviable existence.
Tuesday, June 17
Okay. So I thought I was doing alright with this parenting thing, give or take a few moments. That was right up until Truitt took a dump on the floor today.
Can I just say that potty training sucks? I can practically see the wheels spinning in Tru’s little mind, muttering fiercely “MY way, woman, and on MY time.”
Wednesday, June 18
10:16 and still not asleep. “I need my gac.”
“Your gac? What’s that?”
“My gac.” (As he gives me the “duh” face.)
“What’s it look like?”
“It’s got a blue window and little wheels.”
So we looked, for fifteen minutes, for something that fit the description. “Is it a car?”
“No, it’s a gac.”
“Is it a tractor?”…
“No, it’s a gac.”
“Is it this?” I asked, holding up an oddly shaped Cars character.
“Noooo, it’s a gac.”
Finally, Truitt holds a jet plane aloft triumphantly. “My GAC!”
“Yeah! My GAC!”
Oh. Well, okay.
A brief while later, he’s still wide open. We can hear him over the monitor increasing steadily in volume while Lawson murmurs steadily in a monotone from the other twin, “go to sleep, Truitt. Leave me alone, Truitt. Be quiet, Truitt.”
It’s Duane’s turn. He goes into the bedroom and begins confiscating toys. Over the monitor I hear him say “I’m going to put your truck up now.”
“That’s not a truck. That’s a ambulance.” (Duh.)
“O-kay. I’m going to put your ambulance up now. Say goodnight to the ambulance.”
“No. Ambulances don’t talk.”
Okay, so I just blogged an entire post. Then pressed preview. And then…it was gone. As in vanished. Poof. Disappeared. I have no clue what happened.
It was a really, really awesomely great post, too.
(I’m just saying that to make myself feel better.)
K. So I’m going to bed now. I’ll probably re-write it some other time.
I’ve been working on getting back in the swing of things lately. I’m not sure why…what it is that’s driving me to write more and do more and just be more. Maybe those hypothyroidism meds kicked in all of a sudden. Maybe I just got fed up with an endless string of Pinterest pins that were mocking my eternal busy-ness. Whatever the catalyst, I am on a roll today. I wrote half a paper for my MA class, played with Truitt and took care of his essential needs for food and drink, wiped down the counters, bought groceries, prepped for and got stood up for a photo shoot, and–my crowning achievement–managed to corral the fam for my own photo shoot that lasted all of ten minutes.
By the grumbles heard round the county, you would think that I had yanked them all out of bed for a sunrise session, forced them to take shower beforehand and fix hair and make-up, put on matching Christmas outfits, and pose naked in the snow with the Easter bunny. And maybe a goat or something.
I merely requested their presence next to a window for a few minutes, so each child could press his or her cheek against their father’s for all of 30 seconds while I snapped a button.
“You want me to do want?!” (Touch him.)
“His face is scratchy!” (Yes…just a little closer, please, in order to close that 3 foot gap between your faces.)
“I can’t contort like that!” (Like…sitting on your knees? And leaning close? Weren’t you a gymnast?)
“How much longer?” (Well, let’s see, we’ve finished one child and we have two more, so that much time twice more.)
“MOMMMMMMMEEEEEE! Want to sit on Mommmmmeeeeee!” (Okay, bud, but…..just fuhgeddaboudit.)
It’s a good thing I knew exactly what I wanted, and had my camera set precisely to grab the shot. I took five shots, and these three were golden. Now…to figure out who’s going to take the ones with the kids and myself… ;-)
Today I was reminded, so sweetly, why I wanted another little one as profoundly as I did. And I believe the Lord was perhaps giving me some indication as to why he decided to bestow him upon us…hot mess that he is.
After a busy morning of errands and the gym, and another couple of hours of errands stretching out before me, I couldn’t quite stomach a lunch of McDonalds or Sonic, or wade through the Panera crowd. So I opted for a treat–an out-of-the-ordinary, weekday lunch for just Truitt and myself at O’Charleys.
We shared a booth in the bar, quietly munching on our respective yummies: chicken tenders and fries for Truitt, and a spinach salad for me. He was unusually well-behaved, shooting me smiles, eating agreeably for once, and actually sitting still instead of climbing all over the restaurant.
As I glanced down in to my salad to spear a chunk of chicken, a little hand suddenly crept around the back of my neck. I stilled. Truitt crept closer to me, saying nothing, and continued eating, his arm hanging awkwardly around my neck in what could only be a gesture of affection. It was Danny Zuko at the drive-in at his classic best, stealthily hanging an arm around his Sandy as he fake-yawned.
Will you be my girl?
Only for forever.
I was in Wal-Mart’s vision center yesterday, checking on the overdue status of Lawson’s spectacles, when I happened to glance over and catch an older woman looking intently at Truitt with a misty look in her eye. Since Tru was in the process of Houdini-ing out of the strap that buckled him in to the cart and trying his very best to effect a runaway while I fondly but somewhat absently held him in place, I was at first confused.
Then: “you just look at them all a little differently now, don’t you?”
There was instant recognition, and I nodded soberly. “Yes, ma’am, you do.”
The past few days have been rough. It was difficult to let Lawson get on the schoolbus yesterday morning, difficult to let Autumn go on to the middle school with her ride. It was hard to simply sit at home and wait. Good Morning America was a wash, because the faces of those six and seven year-old babies were there, breaking my heart anew.
There are no words for the unspeakable. To say I’m so sorry is insufficient. It’s a small thing, but I think we have at least shared a communion of grief as parents, brothers, and sisters. We have all asked the question, why?, knowing that there is no answer that will truly appease the soul’s hurt and offer any justice.
Now there is quite a debate circulating about guns, and the legitimacy of gun ownership. Some of the debate I have witnessed is pretty intense…pretty vitriolic, really. In all fairness, I think it is time for a conversation on this topic…a civil exchange. It needs to be a dialogue, though–a courteous give and take of ideas. I’d love to hear your thoughts…how about I start with mine?
We have always been supporters of the right to bear arms. My husband hunts, and stocks our freezer every year with meat we do not have to purchase in a supermarket, meat he has processed with his own hands, meat that is lean, free of any preservatives, and is entirely “organic.” He is passing the art and skill of hunting down to his son, as it has been done for generations preceding him. Gun ownership is something that has always been handled carefully and responsibly in our home. Our children are familiar with guns and the mechanics of the weapons, but have been thoroughly instructed in the safety issues that accompany them. They go hand in hand. There has never been a loaded gun brought into our home in the 17 years that we have been married, and God willing, that will continue.
I was nonetheless appalled when I saw the weapon that Adam Lanza used. This type of weapon has no place in the tradition of hunting, or even in target shooting, for that matter. I can’t really think of a situation where it’s necessary, except combat. To me, the question up for debate is not so much whether or not there should be gun control, but to what extent guns should be controlled. Does gun control mean the government will be able to dictate I may or may not own a gun at all? Boo, hiss. Or does gun control mean the government will set tighter limits on how I may purchase a gun (did you know that a gun may be purchased with no waiting period and no background check at most gun shows?)? Check. Does gun control mean no personally purchased weapons with a round capacity beyond…say…five? Fine by me. I’m not unreasonable–would just ask that my government not be unreasonable, as well.
The simple, basic truth of this matter is that a gun did not kill those precious babies. A deranged man did. He chose a particular weapon, and used it. He could have chosen an explosive device, and killed hundreds more. It is God’s grace, to my thinking, that he did not.
My point is this: until we–all of us: parents, educators, politicians–get to the why of the problem, the controls we enact and the safeguards we initiate will be flotsam protections against a rapidly rising tide.