Med change pen pals: Part 1

Med Change Pen Pals – Part 1

Scott is a volunteer coordinator at SickNotWeak, and we started exchanging letters in May when he switched medications. This is the first half of our correspondence – we decided to share it because going through med changes requires a lot of support, and sometimes the best person to turn to is someone who’s been through similar stuff. We want to create a safety net of pen pals to talk about anything and everything mental health. If you want to get in on this, email me at leanne.simpson@sicknotweak.com and I will set you up with a pen pal!

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Hey Scott!

This is probably the best idea I had all week (except for my dinosaur meme article, because dinosaurs>everything). Coming off any medication is hard – especially if it’s been a long-term relationship – and in my personal experience, I’ve found that having a wide support group is key. You can’t call your doctor at 2 am when you’re having trouble sleeping, but you can call me and we can talk about ice cream into the wee hours of the morning. I’m not even sure my doctor has been on meds, so I feel like when I’m bitching about all the side effects and he’s focused on long-term benefits, there’s a bit of a disconnect. And don’t get me wrong – his support is incredibly important. But sometimes I just want someone to hate Seroquel just half as much as I do, no questions asked. Like when you automatically hate your best friend’s ex, even if he’s a puppy-saving superhero. It’s the comradery that counts.

I’m thinking this arrangement is kind of like AA sponsorship, except there are zero steps and a million drugs. Also it works both ways, as Seroquel withdrawal can last up to 90 days and I’m only one month into the madness (and still occasionally unable to keep food down). We’re going to do this together 🙂

Want to give me a quick recap of the med you’re tapering and how you’ve been feeling? I bet you aced that exam despite your sleep problems. Just the fact that you wrote an entire exam and biked there and back before I even rolled out of bed means you’re a superstar!

Hugs,

– Leanne

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Hey Leanne,

I think that we definitely need to come up with a cool name for this. However, as I am 1000 times less creative than you, I will leave that task up to you and your amazing brain. I 100% agree that having a good support network is key to med changes, whether that is 1 person, or 100 people. Because, you’re right, your doctor won’t answer the phone at 2am and talk to you until meds-mouth kicks in and you can no longer form coherent sentences, unlike you, who talked to me for an hour when I was struggling the other night. For me, 2 is the perfect number. I’ve only told you and my best friend from home, and I’m quite content with that!

I’ve always been afraid of telling other people about my feelings, but what I’ve come to realize is that people are so supportive of each other. When I was working in residence this school year and I had just dealt with a difficult situation that I needed help processing, I was always so surprised and thankful at how much other people actually care and want to help. Like seriously.

All in all, I’m scared shitless, but I know that this is going to be a process.

Confiding in other people is always scary, but it’s like talking to your crush – it gets easier with time.

Anyways, Lyrica and I are currently in a complicated relationship. I have been taking it for anxiety for something like 3 years, and as much as I would like to break things off, Lyrica doesn’t want to give up that easily. Since starting my taper this week, I (thankfully) haven’t had to take anything to help me sleep since Wednesday night, but I am still having trouble falling asleep as it takes at least an hour of tossing-and- turning in bed. Aside from that, though, my anxiety is coming back with a vengeance, and it’s bringing back a lot of horrible anxiety-provoking memories that I’ve worked hard to forget about. So, all in all, I’m scared shitless, but I know that this is going to be a process.

Take care,

Scott

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Hi Scott!

I know you think that you let yourself down, but you didn’t. If it wasn’t the right time to taper, it wasn’t the right time. There’s no shame on being on any sort of medication, and if it’s helping you live a better life, then stick with it. At least you know that it’s actually helping you now! And I’m still so proud of you for ordering that 8-topping pizza even when you felt like you couldn’t eat. It looked delicious and I only hated you a little bit for not sharing!

I tried to come off Seroquel several times before it stuck. I didn’t want to come off it because it wasn’t doing the job – my moods had stayed fairly stable for three years – but I felt like the side effects were making me lose parts of myself (sometimes literally – my shower drain looks like Cousin It!). The first time I tried was in the middle of exams, and it was probably one of my dumber choices in life. I was shaking and couldn’t eat or sleep, and I honestly thought I was going to die. I only ended up getting off it successfully at a time when I was confined to bed anyways, so I didn’t have external things to deal with. Your time will come if you need it 🙂

You’ve pulled me out of a hole of self-loathing once or twice.

But one of the things I love about you is that despite everything you’re going through, you are a huge support to the people around you. You’ve pulled me out of a hole of self-loathing once or twice. Instead of feeling like you failed, just think of what you’d say to one of your res kids, or a high school friend, or even me. You on Lyrica is no worse than you without it. You on anything is perfect, and the fact that you were able to step back from your heightened anxiety and make that tough call means that you are stronger than you give yourself credit for.

Okay, going to order a pizza now. 9 toppings, of course.

Cheers,

– Leanne

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Hey Leanne,

That’s what I’m trying to tell myself. I knew going into my taper that it wasn’t going to be an easy thing to do, but I thought that I was going to be mentally prepared for whatever symptoms popped up. However, I was not. What eventually happened was that my anxiety reached a point where I was too anxious to leave my apartment. I ended up forcing myself to go to an arts performance downtown via bus, and the whole time I was away, I was panicking about not being able to find a bathroom, especially when I was stranded downtown in pouring rain without an umbrella waiting for the bus to take me home (my appearance and attitude could be accurately portrayed with a picture of wet grumpy cat). But what finally swayed my decision to get off of the tapering­train was when I was pacing around my apartment because I was too anxious to sit down, and I realized that I had not eaten anything all day, but I was too anxious to eat. It was just a really strong deja­vu from darker times in my life, and I didn’t want to go through that again. There were a few other factors that contributed to my decision, like taking more Ativan over the span of 5 days than I had done in 2 months, and being unable to sleep before counting 20,000 sheep, but freaking out over a simple trip downtown was what finally put me over the edge.

To be fully honest, after making this choice, I hated myself. I felt like I had failed myself and the people who were so supportive of my decision to taper. But you said something that really helped me: “You listened to your body”. And then I thought about it some more. As much as I wanted to get off Lyrica, my body was telling me that it was not the right time. Then, I started to think my decision to taper as an experiment (one of the unavoidable side­effects of being a science student). My anxiety had been manageable for the better part of a year, so I wanted to see if I no longer needed to take Lyrica. So, my psychiatrist and I devised a plan where we would start tapering to see what would happen, and my body told me that it was not the right time. Being unable to taper wasn’t indicative of me failing, it was the result listening to my body when it told me that it still needed help controlling my anxiety. My experiment was successful, and now I know that I still need to be on medication, and I am okay with that.

Taking medication does not mean that you are weak.

While medication certainly isn’t everyone’s cup of tea, my opinion is that there is nothing wrong with relying on prescribed medication to fix my body’s chemical imbalances. When you have, for example, type 1 diabetes, you wouldn’t loathe yourself for being unable to lower your blood sugar at will, you would understand that taking insulin is required to help make your body function normally again. Suffering from a mental illness is no different. Something in your brain isn’t working the way it is supposed to, and medication helps things function properly again. Taking medication does not mean that you are weak, it means that you are willing to accept that sometimes, your body needs some help, and you’re not going to let your mental illness restrict your life.

You should be so proud of yourself. You have gone through some truly traumatic things in your life, things that I don’t know if I would be able to handle. But not only have you made it through every time, you did it without losing your sense of humour, your optimism, or your smile. And you have taken those experiences and used them to give hope to people all over the world who are struggling, including myself. Whenever I am feeling down, I try to think of you, and the way you have repeatedly kicked the shit out of bipolar disorder so many times, which gives me hope that I can do the same thing to my mental health problems.

Time to get groceries; I’m tired of eating only apples and cupcakes.

Scott

1. I love that you have an anxiety­ raccoon. That is such a good idea.

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Scott,

Your letter made me so happy! Sometimes I feel like a total fraud when I’m writing my articles because I have as many bad days as anyone else, and I definitely haven’t figured out the end-all secret to dealing with mental illness. Just having these conversations and being able to talk openly about what we’re both going through has been amazing. I’m thinking we should totally make mental health pen pals into a thing for more people (and also that we should meet up for real sometime this summer!)

I’m glad you were able to use your science student brain to figure out that you did the right thing. 20,000 sheep is a hell of a lot of sheep to commit to every night just to say you’re not on medication. I hope you take it easy this week, because putting your body through those kind of changes can be draining. It’s so much to adjust to and it’s hard to explain to people who haven’t been through it themselves. My med changes are starting to even out a little bit – I’m working from home mostly and trying to spend more time writing outside. My mood is so much better when I’m not cooped up in an office, and I can take puppy breaks with Maggie and Charlie.

Having never been on Ativan, I’m kind of curious to hear more about what it feels like when you take it! Were you scared the first time? What happens when it wears off? I have so many questions!

Take care,

– Leanne

P.S. My parents want to have an intervention about me carrying around a tiny pink raccoon everywhere I go.

P.P.S. It probably didn’t help that I painted a portrait of her.