A Look Back - A Pooka's Retrospective

I remember the exact day in my life when I knew that something was really, really wrong with me.

My Junior year of high school, my insomnia and nightmares hit a real peak for me. I couldn't sleep, I couldn't pay attention, my grades slipped. I was miserable. I was also confusing the hell out of everyone. I couldn't sleep, but I was always exhausted and trying to sleep. To me, that made sense. If you can't, you get tired, and you try, but you can't, so you get worse and so on.

Friday night is prime time for high school teens -- no school the next day, and the week is over.

Me, I came home around 3:30, took off my clothes, and crawled in bed. This time, I was so painfully exhausted (everything HURT) that I actually fell asleep.

And stayed that way.

It was around 9 that night when they finally found me. The door to my room had been slightly closed, but open enough that you could see most of the room and that obviously the lights were off. They'd found my books, so they knew I'd at least BEEN home.

No one ever thought of looking in bed.

My boyfriend was in a total panic (I remember him trying not to cry when he found me, yes, HE looked, not my parents), and my parents were, not surprisingly, mad.

I got yelled at for it. By my parents. For being home where I was supposed to be. Hello, Houston? We have a problem.

But I knew then that something really had to be wrong. I wasn't crazy. All the weird aches, weird reactions to medications, the insomnia ... something had to be there.

It took them another 15 years to give it a name.

Fibromyalgia. Fibromyalgic Syndrome. FMS. Fibrositis.

It has a lot of names, but the symptoms are all pretty much the same. Only the severity changes. Each one of us handles the disease differently, each one of us has our own magical combination that will ease it and make it roll over and behave. Not all of us find that combination. Not all of us are taken seriously -- some never are.

It's a disease that affects mostly women, women in the child-bearing "Valium" Stepford years. Think of how long it took pre-menstrual syndrome to even be acknowledged, much less accepted as a reality. In a field where men still dominate, if you can't see it, smell it, or taste it, it's not real. When you can't stab someone with a needle or take an x-ray of it, it's not real.

I faced a lot of that. I faced even more of it before I got to the point where even an idiot could see that something was painfully wrong with me.

I was a hypochondriac. I was just lazy. I just wanted attention.

No, I just wanted to go to sleep and wake up like every normal person on the planet. I wanted to be able to go and run and climb and play without hurting, without knots tearing at my limbs and making them spasm and cramp. I wanted to be able to be with others without catching some virus that someone they were in contact with had, and they only passed it on without becoming sick themselves.

I wanted to be normal, and I never was.

Throw being massively hypoglycemic into the blend, and you get a real mess. My blood sugar was the cause of SO much pain for me and those around me. I would wake up with morning readings of 30 and 40. I remember a reading of 19. Damn near enough to kill a person.

I don't remember a lot of what happened during those swings. I faintly remember a lot of anger, tantrums, hysterics. I remember a lot of bruises from fainting, a lot of laughter and hard looks when I'd pass out in class, or stagger into a doorframe because I was too dizzy to keep my balance. I remember having a lot of arguments with a lot of people, and I know I wasn't even remotely coherent or logical. I just don't remember any of the details. They're lost to me.

I only remember that half an hour or so after someone finally stuffed food in my mouth, I felt better. Logic returned. I'd cry and apologize and never know why.

Cocktail for a maniac. Recipe for a broken heart.

Or classic early fibro symptoms.

The doctors were close, though. They had the right idea over the years, they just never managed to find the right solution. I give them a lot of credit for that. Some of the doctors really did try: Unfortunately, none of the results fit the bill.

I've been tested for lupus more times than the scar on my arm cares to tell. I've been repeatedly tested for rheumatoid arthritis, for Epstein-Barr (mono), Lyme Disease, Multiple Sclerosis.

I've endured wave after wave of miserable tests including a colonoscopy because they were determined for a while that I had Crohn's Disease, or colon polyps, or tumours, or ...

You get the picture.

Only when you start to piece everything together does it begin to make sense.

In the meantime, I watched my self-esteem and confidence dwindle to nothing. *I* knew there was something wrong me, and I knew it wasn't just in my head. There was too much proof that I wasn't crazy, but none of it matched up.

I bruise terribly. I rarely feel an injury, but I will bruise up black and purple and it definitely hurts then. After surgery, (or even my tattoos) I bleed more than I should. I've almost died in childbirth due to massive hemmorhaging. I've had a blood transfusion to keep me from dying.

My bloodwork is all clean. There's nothing in it to explain why my body doesn't want to heal. So I must be imagining it, even when the bruises say otherwise.

I've got more than enough proof that I don't sleep, and when I do, it's restless and harsh and full of nightmares. The list to affirm to that is a mile long.

Is it really surprising that no doctor has ever done a sleep study on me?

The most I've been able to get out of a doctor until recently was the confirmation of Raynaud's Syndrome/Phenomenon. I have abnormally cold hands and feet. Even now, my entire body is quite warm, but my hands are icy and ashen, the skin sagging around the bones and tendons. If I try to warm them, they will change colours from red to purple and back again, and I will be in serious pain. Touching ice, or even a cold glass is agony.

My feet do the same thing. Showers are sheer hell. By the time the water is warm enough on my feet, they hurt. Socks only marginally helps. My feet can be cold inside two pairs of socks and in boots.

All the little things add up. My husband was slowly watching me fall apart, and I know even he thought I was crazy for a while. He might deny it, but you know The Look when you get it, particularly if you've seen it time and time again.

The first real help came on a visit to his mother.

You see, my mother-in-law has Fibromyalgia.

Those little things made perfect sense to her. She's lived with them, too.

To be honest, at the time I didn't think much of what she had to say. I'd been told too often that it was all in my head. Here, take this pill and you'll be fine. Here, go see this shrink, this doctor, this ... whatever. There's nothing wrong with you that I can find, so go away.

And the little things kept adding up. Like having to cut all my hair off because I couldn't keep raising my arms above my head long enough to wash it, much less keep it braided so it didn't knot while I slept. I could not raise my arms above shoulder level. I'd get dizzy, they'd feel like they weighed a thousand pounds and it would HURT, oh God, it would hurt.

I've never, NEVER been comfortable with having my blood pressure taken. It can bring tears to my eyes, it's so painful. I get bruises and strange skin tears from cuffs.

Know what?

There's an FMS Trigger Point there. Go fig. You get a gold star.

Hugs became more and more painful. My hips wouldn't always want to work, they'd lock and send bolts of pain down my legs and into my back. My fingers would suddenly start shaking wildly. I'd drop things. I've never been known as clumsy, but that's certainly what I was turning into.

Then a weird series of events managed to turn my world around and give some sanity back to it.

My labor with Thing 2 was relatively normal by all standards, especially compared to the birth of Thing 1.

The next day in the hospital, however, scared all of us.

My bloodwork came back strangely. I started hurting after dinner, severe, sharp shooting chest pains. My blood pressure spiked, 02 levels dropped, and suddenly I was hooked to EKGs with oxygen going and people basically freaking out on me.

The next bloodwork apparently scared them worse. I was taken off food entirely and set up for an ultrasound.

My, look at the gallstone totally blocking the tube. Maybe that's why her liver is starting to fail.

I'd been in the hospital almost a week when they finally told DG he couldn't come in and stay most of the night. He asked why.

"Because she's no longer on the Critical Care list."

Ahem? Oh hell. Yes, they should have told us I was considered a Critical patient. I'm VERY glad they didn't. That would have just been more stress to handle in an already stressful situation.

I think I knew on some level how serious it was, though. Some of you reading this were around during that period, and possibly remember the letter I wrote in the hospital that DG posted for me. Even though they were trying to keep the new mom calm for Thing 2, I knew, and was scared.

Three months and 60 lost pounds later, after Thing 2 was a little more situated, I went into the hospital.

My gallbladder *had* to come out and my tubes had to be tied because I can't take most birth control and having another child probably would have killed me. We did all that at once to minimize side-effects. I still have problems with scar tissue from the gallbladder, and lots of "echo" memory pain.

But this is where the downhill spiral started. I was tired more often, suffered insomnia worse than before, and occasionally hurt for no apparent reason.

My arm was another *had* to. By the time I reached the surgeon, I'd lost all feeling in my hand and it was totally unusable. A knot of tendon near the TP had looped around my ulnar nerve and completely strangled it. They went in, removed the knot (and the nerve and muscles entirely), and totally rebuilt the inside of my arm to try to prevent it from happening again. I have some permanent nerve damage up in the arm itself, and the scar isn't pretty, but I have my hand back. Recovery time was actually shorter and I pushed myself enough that I have full use of my hand without having to endure the abuse of physical therapy.

My immune system joined the "abandon Pooka" bandwagon after this one. I can catch damn near any virus that even looks at me from a distance.

Just in time for my tonsils -- which had been taken out when I was 18 months old -- to decide to make another appearance. They didn't entirely grow back, but a particularly nasty case of strep hit me, and settled into the new growth and BAM. 9 months solid of hell. I had strep a confirmed 4 times during that 9 months, plus pneumonia, and I was never NOT on an antibiotic. Pneumonia and strep really really SUCK when you're an asthmatic.

I developed my new deadly allergy to penicillin during this time, as well as widened my sulfa allergy to all sulfamides and cephalosporins. No antibiotic ever worked. I stayed sick a solid 9 months. I was in the middle of full tonsilitis when they said to hell with it and took them out.

There weren't any ways around them. Each one was sufficiently traumatic on its own to contribute to the fibro, together, a real mess.

This leaves us where we are today:

-I am often very scatterbrained, unable to retain information I've recently heard or read, sometimes unable to concentrate at all without tears and frustration at the inability to do so.
-I am often incapable of holding my children, or playing with them, or even meeting basic care needs.
-There are days when I physically cannot crawl out of bed, even to use the bathroom, without assistance.
-I cannot sleep. I am alternately exhausted and insomniatic (did I just make up a new word?).
-Sometimes it is all so bad that I wish they would find something fatally wrong with me, just so I know that it would be over soon.

The good news is that fibromyalgia won't kill you.
The bad news is that fibromyalgia won't kill you.

This brings me back to the original purpose and point of all my rambling.

You CANNOT do it alone.

Tomorrow, DG and I will have been married for eleven years.

I never could have made it this far without him.

We have been together through the bad, and the worse. We've seen death up close and had too many personal encounters with him, and together we've won past it.

There are days when we truly loathe each other, but beneath it is still what has brought us and kept us together. You just can't survive this much together and have something relatively small tear it apart.

And I could NOT do it alone. Not without him.

Thank you, honey, for eleven years.

You know why I leave "wonderful" out of that. We aren't perfect. We never will be. And neither of us pretend that we are, either.

Thank you for being there, even when I wasn't.
Thank you for being here for us now, even when I can't.
Thank you for trying to close the gaps that I make out of fear.
Thank you for making me hate you every now and then to bring things back into perspective.
Thank you for not letting me run away.

In shorter words: "Eleven years, and we haven't killed each other yet."

I love you.

~pooka