Pick your poison! Also a rant about trying to police “fakers”.

Medication is a wonderful thing. It is also a right royal pain in my bum.

It is, at time of writing, 6:30am and I have not slept, because I have steroidsomnia. You see, cortisol can cause insomnia. My regular dose is fairly high, and I have to take an evening dose to avoid an adrenal drop overnight, which is unusual; most people take a dose in the morning and a tapered dose in the afternoon, to account for the natural ebb and flow of cortisol levels over a 24-hour cycle. I’ve found, though, that without an evening dose, I start to experience the symptoms of an oncoming adrenal crash at around midnight. Just another way my system doesn’t work – or even not work – as expected.

So. Relatively high regular dose,which means my sleep is messy to begin with. And then when I’m going to do anything that will place stress on my system – like having friends over – I have to take extra, like pre-gaming. If I don’t, I run the risk of a serious crash, the sort of thing that could see me needing to go to the hospital to get IV cortisol and fluids. But that extra really messes with my sleep.

Case in point: I’ve been awake for nearly 24 hours, and while I have a headache, I am not the least bit sleepy.

But the cortisol helps me see my friends, so I’ll take the semi-regular insomnia day, honestly. It’s not like I have anything else I’m doing today anyway.

But that’s just an example of one of my meds and the way it can mess with me. I’m on, at last count, ten oral medications, two injectables, a topical, and an implant. They all have a range of side effects, although I’m relatively lucky; I seem to have avoided the worst of most of them. Although considering my arm appears to have, uh, hidden my implant, we’re still not quite sure what we’re going to do about that one. I need oestrogen from somewhere and an oral option is not a good idea with my clotting disorder.

(Speaking of which: everything is contraindicated with blood thinners. My poor GP has to click so many “yes, we both understand that these medications are usually not prescribed together but she is a snowflake” warnings whenever I get prescriptions.)

This is part of what’s so exhausting about being complexly ill. Juggling all this medication is hard. I bit the bullet not that long ago and got my GP to talk to the pharmacy and start doing Webster packs for me, because I have to take those ten oral meds at three different times of day and with the POTS brain fog it’s so easy to forget if I’ve taken something even if I’m sitting there with the pill bottle in my hand. It’s been a lifesaver – and it’s still not all my meds, because I take the cortisol at varying levels as needed depending on what my plans are that day and I take the blood thinners at varying levels depending on what my clotting factor is like that week, not to mention my pump.

(Another side note: I can test my clotting factor at home now! The testing kit was exoensive and so are the strips but it’s so much easier than trying to get out to the pathologist every week or arranging a home visit, and my GP trusts me. He says I’m one of the most compliant and medically-literate patients he’s ever had.)

I feel like a walking pharmacy some days, and like a hypochondriac others. There’s this community over on reddit that likes to “monitor” and “call out” people – usually women – that they think are “illness fakers”. People who are too sick to be realistic. Who go to doctors until they have the diagnosis they want. Who have too many pieces of medical equipment at home and know too much about their conditions and “just want attention”.

And I sit here, looking at my multiple testing kits (diabetes and Factor V Leiden both need regular blood tests that can be done with finger sticks), my blood pressure cuff that I bought because nobody ever has a wrist cuff and arm cuffs don’t fit me, my pulse oximeter that I got because I needed to have something to show the cardiologist, the fact that POTS takes on average five years and seven different doctors to go from symptom start to diagnosis and is one of the conditions that these “fakers” often have, and I get so furious at how society treats sick people.

Because yes, we want attention. There is something wrong with us and it can take years of dismissal before we’re lucky enough to find a doctor who looks at us seriously. Because the medical system is bad at women’s health, especially fat women’s health, and these autoimmune conditions, which aren’t well understood to begin with, are vastly more common in women. We don’t know why. Because they haven’t been studied enough. Because they’re women’s issues.

That reddit community has a lovely name for us. “Munchies”. Based on Munchausen syndrome, you see. Because someone so mentally disturbed that they make themselves appear sick – if that’s even what’s happening in the majority of these cases – is someone to be derided with a silly nickname. If someone does suffer from hypochondria, factitious disorder, or somatoform disorder, they’re still unwell and need help.

I am sick with the things I say I’m sick with. My cardiologist says he’s thankful that I’m as medically literate as I am; so have most, if not all of the other doctors I’ve talked to, even the ones who couldn’t help me. Emergency department staff are always happy to see my medical document; it makes their job easier, they say. But on paper, I look just like the women who get talked about as fakers. I have a list as long as my arm of things wrong with me, several of which are hard to test for. (Gee, it’s like autoimmune conditions are complicated, poorly-understood, and often diagnoses of exclusion or something.) I know “too much” about my stuff, like I researched it to shop it to doctors. I have too many specialists.

Look, that’s just how life is when you reach a certain tipping point. Once enough things in your body go wrong, it all spins out of joint like a badly-wired Ferris wheel falling off its axle. Add in the fact that most of us are pretty traumatised by this point in our medical journey and yeah, we’re going to be showing signs of mental illness, whether that’s depression or anxiety or one of the many personality disorders that spawn from trauma. That doesn’t mean we’re faking. It means we’re sick.

I mean, I’m preaching to the choir here. I’m pretty sure nobody who reads this blog thinks I’m faking. But hey, maybe there’s someone new. Maybe someone else who’s struggling finds this and realises they’re not alone and gets some comfort from that.

Meanwhile, the cat is on me again and I have got my words out, so I’m going to go play some Sims and try to coax my body into sleeping just a little bit.