Starting new medication is always a bit nerve wrecking at the best of times, you’re never sure what side effects there’ll be, if the meds will help or if they’ll just make you worse. Sure you hope it’ll help you in some way, but it’s also a time of uncertainty.
As my treatment has progressed I’ve graduated from my illness trying to kill me, to just trying to humiliate me. Treating one of my chronic infections Babesia (wiki article here, better symptom list here), gives me specific kinds of brain reactions that include bi-polar like mood swings.
At the start my highs would involve thinking I had super powers like flying or running faster than Usain Bolt with his butt on fire. I would try to jump out of second floor windows, pour boiling water out of the kettle with only my little finger, or text my partner on a night shift at 3am to buy a tricycle on the way home as I had this immediate, desperate urge to ride a tricycle down the street. As you do. I was always completely obsessed with pirates and ninjas like an 8 year old. I once even spent an hour replacing the lyrics of well known songs with as many types of cheese as I could think of. “Sweet dreams are made of cheese, who am I to disa-brie….” and so on.
The highs are all shits and giggles until they rapidly turn into a pit-of-despair low. My most recent was after a particularly long high and triggered by a series of rather unfortunate events. It culminated in me huffing off to the park, and when asked by my partner where I was going, I simply shouted ‘OUT’ like a grumpy teenager. I sat under a tree in the pouring rain crying behind my oversized sunglasses. It was like a Hollywood movie but without the plot holes, action scenes or cute child actors who grow up to be shoplifting crack addicts.
So as you can see by my past history, last week I was
mildly concerned terrified of starting an infamous drug known for being the atomic bomb of these kinds of meds. There are many good points of being active in online patient communities like the support you get and the insider information, but sometimes the horror stories are well, quite horrific. I strapped myself in and took the plunge, eyes on the prize and all that.
The first day or so I felt great. Really great! Weirdly too great! I was hyper and had ideas pouring out of me like a drunk hobo having a piss under a bridge. Then the hallucinations started, nothing major like I have in the past, my favourite being the bicycle pump that appeared to slowly float through the air. What’s the point in hallucinating if it’s going to be that dull? I’d much rather see unicorns and pink elephants. Then the vertigo happened, it was so bad you could’ve held me upside down and I wouldn’t have noticed. My spatial awareness broke and I jabbed myself in the face with a fork when I missed my mouth. As you do. My wee was so dark you could’ve mistaken it for black tea, and I’ve been as sweaty as a 30 st man wearing a furry panda outfit. To top it all off, for the last few days I’ve had a headache like my brain is trying to push my forehead off, leap out and dance around in front of me. Actually that would be a good hallucination, can I put a request in for that alongside the unicorns?
So all in all, the first week of the ‘new meds’ experience has been fun. I’m hoping to do something even more exciting next week, like maybe leave the house. My new meds aren’t always like this, they’re often purely physical and not mental, but that’s not nearly as fun to write about. It really depends what they are and what they’re targeting, but taking something new never stops being scary.
I think everyone worries as it always seems a bit of a gamble about what will happen. People deal with this fear in different ways, some choose to staunchly believe their doctors are God-like and know absolutely everything there is to know about their body and will either foresee or be able to sort out any complications. Others might put off taking any new medication as long as they possibly can. And then some, like me, research it thoroughly (I have a degree in Lymeology from the University of DrGoogle – Patient Forum Campus.) After I’m done learning everything I can, I take the medication more-or-less as intended (because of course I know best, what with my degree and everything) and then wonder why it all goes horribly wrong. Cue ‘fessing up to my doc and then taking it as she tells me to, with another hilarious anecdote to add to my collection.
I don’t think it matters which category you fall into, just remember that it’s normal to feel worried about new meds. The best thing you can do is accept the worry as normal and part of the process, know that you’re not alone. Keep a note of increased or new symptoms so you can update your doctor and call an ambulance if anything really worrying happens. Check out the drug interaction checker if you’re concerned about taking meds with other meds. Most of all, keep being silly, keep laughing and keep yourself distracted by making up songs with types of cheeses in. As you do.