the f word

Not the fun, four-letter f word which ranks highly in my list of preferred words; but the less fun, longer one that means questions with no answers and possibilities with no definites.

So I saw the doctor that pseudo-specialises in difficult stuff. He confirmed the diagnosis of fibromyalgia. He did do a couple more tests just to rule out a few other things but he is not expecting them to be positive. Clearly my heart and my veins thought these were not going to be useful tests as well, because they were doing their damnedest to avoid giving any blood for them. (How fucking screwed is it that the blood bank people won’t take my blood because omg tachycardia what if your heart pumps out all your blood at once and you die yet the actual reality is that extracting blood from me is usually a task accomplished by only the most skilled vampire phlebotomist.) Had to get jabbed on both sides and the woman actually had to use a syringe to suck the blood out since it did not want to flow on its own. I have a phone appointment booked for Friday to just check on those results, so we don’t have to drive all the way back to Coorparoo. The guy wrote a list of stuff that can be tried which sometimes helps people to feel better and less painy. In order to know if something is actually helping I can only try one thing at a time. The first is magnesium. The jar of stuff claims that it has a “natural orange flavour” but, ugh. It was disgustingly sweet. Like vitamin C pills dissolved in water with a few spoons of sugar added. I could not get through the whole lot yesterday, I think I am going to have to build my taste tolerance to it. Have to give it 3 to 4 weeks to see if it makes me feel any better and if it doesn’t, move onto the next thing. Which is probably also not on a prescription. So there is no PBS price or safety net or anything like that.

I’m unsure how I feel about this. The f word. (It just sounds cooler to say that.) On the one hand, you can say to people I have fibromyalgia and most people will at least have heard of it so there’s less explaining to do than trying to tell them that what SD is. On the other hand, fibromyalgia is essentially characterised by it’s lack of unique characteristics. The symptoms overlap those of numerous other musculoskeletal or rheumatological conditions. There’s nothing to test for, except for testing for all those other conditions and confirming that they aren’t there. Research into the causes and mechanisms of fibromyalgia is still very much in early stages and there is a long way to go before it’s properly understood. Theoretically, even, all the people who have been diagnosed with it could have five or ten or a hundred different conditions which they just don’t know about because they’re similar in presentation and no one knows yet where to look to differentiate them. And maybe that is why some things work to improve some peoples symptoms and not other peoples.

It’s very difficult for me to feel just acceptance at having something that cannot be explained. It’s not like it’s a new thing, because to a large degree, whatever is wrong with Stephanie’s legs is also not explained/explainable, and that has caused me just as much frustration. If they don’t know what is causing the problem, it is therefore also impossible to know that they are doing the right things to alleviate it. The best you can hope for is trying things that help some people and hoping they might help you. I suppose that this is valuable in it’s own way, in that it possibly contributes to the greater body of knowledge that potentially will one day lead to someone figuring it all out. When you (or your daughter) are in pain now, though, that’s not the most comforting thought.

It also gives you a bit of an understanding of what is considered an acceptable “cost” for your life or quality of life. While many people like to say that you can’t put a value on someone’s life, on them living pain free.. it’s simply not true unless you happen to be a gazillionaire who literally has no possibility of running out of money, ever. You reach a point where “they” say that it is not worth pursuing any further investigations or where a doctor can prescribe something that has research-supported evidence as being beneficial for you but it’s not recognised for support in the way that other medicines generally are. With Stephanie it was a refusal to do an MRI on her brain – the last logical place to look, having ruled out anything physical going on in her legs, hips, spine, immune system etc. Or, we could get the MRI done: if we paid almost $700 out of pocket. There are many, many people for whom that is just not feasible. As a parent watching your child learning to live with pain, it seems dreadfully unfair that the government/medicare – who could no doubt run the test for a much lower cost using their own equipment – won’t, while politicians get base incomes three times greater than the national average, as well as ludicrous allowances ($276 a night!) for things like staying in what is essentially their own (second) home while they’re in Canberra. How is that fair? Why do people who have more than enough money to opt-out of our national public health system get to determine limits to how far it goes to support the people who have no choice but to use it?

Anyway.

Another thing I’ve been feeling rather bitter about lately is this whole “pain management” thing. Recently a rule was introduced where any medication containing codeine now requires a prescription. Previously it was possible to get combination medicines with low doses of codeine over-the-counter at a pharmacy. Apparently, people get fucking high on that or some shit.. I don’t know, because I can’t imagine how you possibly could but that’s maybe because I only actually use them for trying to stop pain. But as a result of this change, there have been these ads popping up around the place saying things like.. “your local pharmacist can help you to come up with a pain management plan tailored to your needs” …. (now that we won’t let you have actual drugs that would actually take away your pain lolz.) The words “pain management” are a fucking joke. What it means is that they want to teach you to do things even though you’re in fucking pain, and not let it show that you’re in fucking pain, so that once you have mastered this skill they can pat themselves on the back and say look at what a great outcome you have without the need for medicine after all! and because they no longer have to see that you are in pain, they can tell themselves that you aren’t and that they fixed it and feel good that they did something benevolent and have helped stop the evil plague of opioid addicted losers.

If they don’t want people to use opioids, then why don’t they come up with an alternative that does not amount to grit your teeth, slap on a smile and walk it off? One that actually takes the pain away. Not just makes it appear to everyone else that it’s gone. “Pain management” is not for the person in pain, it’s to reduce the exposure of everyone else to your suffering. Because suffering is a weakness and this world hates any form of weakness.

the f word