Just a few more thoughts on epilepsy and chronic illness and stuffs…I’ve written about this before, here. But I have had some new thoughts since then! So read on.
Seizure free? Whoa!
I haven’t had a seizure for over eight weeks now. EIGHT WEEKS. Why yes, I am rather excited, can you tell? As far as I remember, I haven’t gone that long without seizures since I was eleven or twelve. I am on a new drug and, for the first time in a zillion (ok, ten) years, this drug actually works. I can’t even list all the drugs I have tried for the past decade to try and get this thing under control. I thought there were no more drugs I could take. It really does feel magical. Like somebody has opened up my head, reached in, and rewired it so that the knots and glitches causing seizures have been straightened out. Weird visual, I know, but just go with it.
OK, I must confess. There is one slightly annoying thing about the new med. It’s made my periods dry up. Which led to the following conversation with my GP.
Me: I haven’t had a period for 8.5 weeks.
Her: Could you be pregnant?
Me: Absolutley not.
Her: Well, what contraceptive methods are you using?
I have been seeing this doc for quite some time. I’m out to her, as I am to the majority of people in my life. I think it must just be an automatic response. Looks like a woman? Looks older than puberty? Not menstruating? Must be straight, and must be UP THE DUFF! Which is kinda sad and indicative of our heteronormative world. But that’s another post. Also, I don’t have a girlfriend and I haven’t had sex of any kind for many moons. So I’m actually a celibate lesbian, even more pregnant-proof! But again, that’s another post.
I don’t mind that Aunty Flow hasn’t been visiting lately. It’s quite convenient really. But a little part of me- particularly Future Me- is worried that it’s possibly impacting on my health and my abilities to do baby-making down the track. Hmmm. Actually I have a whole swag of anxieties around epilepsy and being pregnant/ having kids. Anti-epileptic drugs can harm the baby. Going off anti-epileptics during pregnancy can cause seizures which can harm the baby. Having a seizure during labour…oh, you get the picture. It’s not something that requires attention right now, and so I shall file it away for future worrying. *click* That was the filing cabinet in my brain sliding shut.
Travelling with epilepsy
Something that does require attention right now is preparing to fly on a jet plane to Nepal, which I will be doing in August. I will also be walking up and down mountains. In remote areas. Like, places where epilepsy is still considered to be an expression of witchcraft. Eeeek.
The first obstacle to making this adventure happen was finding a travel insurance company that would provide me with cover for both a) epilepsy and b) remote area evacuation. It was not an easy task to find (and pay for) a product I hope I never have to actually use. But I did it and wept a little as I deposited almost a fortnight’s cash over to this large, reputable insurance company. They better be damn helpful if I do need to engage with them.
Next step is getting my doctor’s letter listing all the meds on it translated into Thai (for the stopover) and Nepali. I’m having nightmares of being chucked in a jail somewhere because a customs official mistakes my medications for something more illicit and labels me as a drug trafficker. Yay! More stress!
And finally, an epic organisation/ memory fail…
I was supposed to pick up my medications from the chemist today, because I ran out of the vital magic drug and have almost run out of some other meds. But I forgot, because I also had a assignment due and clearly my brain is not up for holding mutiple things in my memory right now. So, it’s 9pm and I suddenly have an ‘OH FUCK’ moment, where the important thing you were supposed to remember comes flashing into your consciousness.
It’s OK, I reassure myself, the pharmacy is open until 9.30pm. Haven’t done much exercise today, so run like the wind, bullseye! I get there at 9.1opm, and it turns out they actually shut at 9pm on Fridays. I bang on the door. ‘I’m not robbing you!’ I shout. ‘I’m not a junkie! I just really need my meds!’. They take pity on me and open up. I almost cry in gratitude. They look at me like I’m somewhat deranged. Well, aint that the truth.
How To Be A Responsible Epileptic, Rule #47: Always secure the medication that you are heavily dependent on BEFORE you completely run out.
And a fun fact to finish with: I am dependent on four medications to keep me functional/ alive. The full cost of them is $549.95 per month. I pay $23.20 towards that. I don’t thank the government often but I will on this occasion. Thank you, Australian government, for the Pharmaceutical Benefits Scheme and Health Care Card concessions. Many of your other policies are terrible but these ones are amazing. Don’t you ever try to take them away or I kill you. Love, Me.