Complaints

I am not one to complain. At least, I don’t think I am. Alright, alright. Let’s leave it at ‘I try not to complain’. But there are some days …

Today is one such day. Today, I ache. Every part of me, in places that I didn’t know could ache, and at a pitch that would remind you – could you hear it – of fingernails on a chalkboard.

Just yesterday, I was thinking how I feel a fraud, thinking my fibromyalgia might be a disability. Then I wake up this morning and I know it can be, especially when I consider that there are those who suffer from it much worse than I do.

So bear with me whilst I take this opportunity to complain a wee bit. I hurt. Damn it, I ache and it is not a happy thing. My legs feel like I ran a marathon without any training. The soles of my feet twinge with each step I take. My hands, to be specific the backs of my hands, feel arthritic. My jaw has that “fresh from the dentist – open wide now” hinge ache. There is, would you believe, a spot on the back of my head that truly hurts today.

Oh, and all that doesn’t take into account the mid-grade headache I’ve had since my eyes opened, reluctantly, this fine morning. I feel tired; on the edge of exhaustion. Everything feels like it takes more effort than I have the strength for. Even reading is a strain as my brain struggles to stay focused.

It is a grey dreary day, chilly with a biting wind. Not quite winter, but it sure as hell ain’t spring! A girl could just weep. The snow isn’t melting today. The sun isn’t shining today. The forecast calls for possible snow flurries.

Bah!

Then I snuggle into the crook of Buffalo’s shoulder and feel his arm close round me. I listen to the rumble of his voice and the thump of his heart as I rest my head on his chest. I take a deep breath, ignore the ache that tweaks down my spine as I do so, and know that life is good.

Tomorrow, I might feel a fraud again. Tonight, I have my true love next to me and my aches are mere annoyances.

I have no complaints.

A Pain in the ...

The brain scan was normal.

That is a good thing, as my baby is wont to say. He gave the verdict a very enthusiastic two thumbs up. I could only agree. The possibility of a tumour or expanding blood vessel had left me a bit shaken at the prognosis. But if it wasn’t either of those causes, it left the question of just what was wrong.

What I knew for certain, the pain I felt throughout the left side of my face was very wrong. Tender trigger points behind my ear, on the top of my head made something usually delightful as eating or a risk, and generally caused an increase in the pain level. On at least one occasion, just washing my hair did result in a trip to the ER for much stronger pain meds.

By now, it is a well-established fact that my body is incompatible with modern medicine. Chemicals are anathema to me, most of them that is. Either they do nothing at all or they cause the most god-awful side effects, allergic reactions known to medical science. If there is a 99.99% chance that a given medicine will be just the ticket, I fall into the 0.01% with truly disastrous side effects. Lucky, lucky me.

That’s what seems to have happened here. I had an infection. The doctor proscribed a gel to deal with it. Then things went slightly off the desired course of treatment. An ingredient in the gel, absorbed into my blood stream, caused the pseudo-trigeminal neuralgia.

Now don’t get me wrong; that is very good news. It really is. I was not at all happy with the diagnosis of trigeminal neuralgia. That’s one bitch of a condition, and it only gets worse over time. But somehow, I still feel a bit irritated with it all.

All this pain has been some of the worst I’ve ever experienced, and that’s saying something. I have fibromyalgia; something always hurts. I have migraines, and they really hurt. This … well, this was a whole new realm of pain. Never before have I even come close to passing out because of pain. Had I not been so determined not to abandon (and purely upset) my baby in a strange city without direction or known destination, I probably would have just slipped into the darkness for a while.

As it is, there is still a lingering sensitivity that I’ve no idea how long it will last. Given the last allergic reaction and the time it took for it to metabolize out of my system, I probably have another week or so to go. I am relieved that the symptoms are abating. I can chew again without inducing purest agony and that is a good thing. But damn it! The cost of curing the infection seems just a bit too high this time round.

The doctor kindly wrote out the name of the gel ingredient he felt triggered the allergy. I have added it to my ever-growing list of “Drugs I Cannot Take.” It is a long list by this time. Heck, it includes whole classes of drugs. I heard my doctor mutter as he added this latest allergy to my chart, “I don’t know what to treat you with anymore.”

This summer, I think I’ll start an herb garden … just in case.

For Real

“Research Shows Fibromyalgia Pain is Real!” the headline says. As I scan the article, I am reminded of the first doctor to diagnose my fibromyalgia. After he explained what it was I had, he said he had something very important to tell me.

“Listen carefully,” he said. “I want you to remember this. Fibromyalgia is real. It is not something you imagine. It’s not in your head. And there is nothing wrong with you mentally or emotionally. The pains you feel, along with the other symptoms, are as real as this table. You are not crazy and don’t ever let anyone tell you different. And they will try. Even the medical professionals, doctors, nurses, they’ll tell you it’s not real. I want you to ignore them. You know it’s real and I know it’s real. One day, they will know too.”

That day has come, it seems. I wonder how that doctor feels reading this study. Vindicated, I imagine, and relieved … and frustrated, no doubt. If only they had taken this seriously fifteen or twenty years sooner.

My current doctor is still frustrated, and not just with the attitudes toward fibromyalgia. He sees patients regularly that have some very real problems. No one is listening to them, though. Other doctors, specialists, refuse to accept the observations of family practitioners as valid. While I can understand the need for verifiable research, the immediate brush-off given to peoples’ personal experiences strikes me as wrong.

The attitude taken by modern medicine that ‘if it doesn’t bleed, it ain’t real’ needs some serious rethinking. They readily wax eloquent on the complexities of the human body and the vast amounts of what they do not know when they cannot find a ready answer. And when the patient fails to be satisfied as the problem persists or even worsens, they turn it back on the patient.

Lazy, mentally unstable, emotionally disturbed; these are just a few of the things that have been said about, and to me. I was lucky though. I found two doctors who took me seriously, fibromyalgia and all. I am deeply grateful for their belief in something that, at the time, was not thought “real.” Maybe now that there is scientific proof, those who are diagnosed with fibromyalgia will be given the treatment everyone should have received all along.