It's got to get bad before it gets good

July 20, 2015 9:56 PM

How do you make yourself keep taking medication with unpleasant side effects?

I have to take a medication for 12 months to fix a seriously physically debilitating/disabling but not life-threatening medical condition.

Unfortunately, the medication causes
- mental tiredness;
- difficulty concentrating, spacey-ness, short term memory problems;
- drowsiness;
- nausea;
- vomiting;
- physical tiredness;
- disrupted sleep;
- vivid dreams;
- headache;
- diarrhea;
- balance problems.

It can also make your hair fall out.

My Dr has emphasized that while this medication will help me in the long term, it will make me feel much worse in the short-term and medium-term.

How do you keep making yourself take a medication with unpleasant side effects for a whole 12 months?

posted by Year of meteors to Health & Fitness (16 answers total)

Figure out ways to reward yourself and to keep track of the fact that you're making progress.

I like to make sticker charts for long-term goals, especially the unpleasant ones. It makes me recognize that I've gotten through one more day/week/episode/whatever every time I put a sticker up. It also provides a handy visual reference of how many bites I've taken of the metaphorical elephant. (If you get the bulk packs for teachers, you can get a big variety of small stickers very inexpensively.)
posted by Blue Jello Elf at 10:05 PM on July 20, 2015 [2 favorites]

It's not quite the answer you're looking for but how about getting a second opinion for starters?

Perhaps you can promise yourself that you're going to try it for the year but allow yourself to stop if it isn't working or isn't working as well as you'd hoped? (Of course, you'd do with with medical assistance.)

Imagine how your life will be better in a year once it becomes fully effective?

Think of ways to treat yourself as you make progress?

Reach out to others who take the same medicine and find reassurance in their shared experiences?

Would looking into new hairstyles, hair decorations or scarves help make you feel better or worse? You certainly don't have to if it makes you unhappy but preparing now might make you feel more empowered if there is hair loss?

I'm sorry the medicine takes so long to kick in and that the potential side effects are so rough.
posted by smorgasbord at 10:09 PM on July 20, 2015 [1 favorite]

This sounds really difficult, and I am sorry to hear that you are in this situation.

How about a year long savings goal to go along with it, and then a huge reward like a holiday at the end?

Track your progress of both goals so you can see how wonderfully you are doing.

Start a blog or online diary? Some days will be better than others and it can be helpful to read back over your own experiences.

Seconding a support group too.
posted by Youremyworld at 10:17 PM on July 20, 2015 [2 favorites]

There's a point where you're taking medications to deal with the side effects of other medications to deal with the side effects of yet other medications, and that way can lead to madness, but there may be some medical approaches to deal with specific side effects that are more severe. For instance, if you have a lot of trouble with nausea and vomiting, there are drugs that can help with that if necessary. If you have trouble with disrupted sleep, there are both drugs and CBT approaches to help you make the most of your nighttime hours. Diarrhea can be helped through diet and medicines.

As you get used to the medication, you'll start to get an idea of how it effects you and I hope your doctor is open to working with you to deal with the most bothersome side effects to the extent practical.
posted by zachlipton at 10:22 PM on July 20, 2015 [3 favorites]

Response by poster: In case it was ambiguous: the side effects above aren't potential side effects, they're all [with the exception of hairloss] side effects that I have already experienced since I started this med regime.
posted by Year of meteors at 10:35 PM on July 20, 2015 [1 favorite]

Oh hey, you sound like me, except for the fact my meds don't give me short-term memory loss or balance problems and they do weaken my fingernails (part of the same effect that may get my hair over time). And I don't have a twelve-month deadline after which I get to stop taking them. I've been on them for several years. I also take a separate medication to reduce side effects. You might see if that's an option for you.

Yeah, it really, really sucks. The alternative for me is that I could keep having severe and painful eye problems (for which I take additional debilitating medications) and ultimately go blind in one or both eyes. For me it's eyes on the prize, quite literally. Hang in there and count the days until you're done, offer yourself a big prize at the end, and treat yourself gently while you're taking the meds. Let other people do things for you and cut back on your burdens. Say no to things you don't want to do. Try intermittent prizes, sticker chains, etc, if that kind of thing works for you in other areas of your life.

Best of luck to you for a successful resolution to your condition.
posted by immlass at 10:49 PM on July 20, 2015 [3 favorites]

Have you ever decided to go to the gym and stick with it?

Oh fuck it hurts. I have to do extra laundry. People at the gym look at me when I can't do what they do. My feet smell. My calves, my calves. And in a few months I will look awesome.

Same deal here. What's happening right now sucks everything. I feel like ass. And soon, I don't have to feel like this anymore AND I don't have to feel like $diagnosis anymore. Short term pain, long term gain. I will be so much happier when this is over.

That sounds super glib, and I understand (from experience) that it's just not that easy. And at the end of the day that's what it boils down to: sucks now, better later.

Maybe it could be useful for you to write down everything that's going to be better when this is over. Literally write it down. Put it somewhere you'll see it every day. "Sucks now, and 365 minus n days from now, everything's going to be better."

Also, important: give yourself permission to be unhappy about it. Let yourself feel "oh my fucking shit this sucks everything. I hate pooping like this."

And! "In a few months this will be over and things will be better because XYZ."

And remember, you've got a few thousand cheerleaders here on AskMe who are here to say "YEAH! YOU DID A THING TO MAKE YOUR LIFE BETTER."

You're making your life better. Sucks now. How are you with general self-care, physical and emotional? Maybe work on that (I'm quite sure people more energetic than me are going to pop in and give you strategies for self-care), take it a day at a time.

Way to go you for doing something unpleasant that makes your life better long term. Nobody gets enough applause for that so here, right now, I am giving you a round of applause in my apartment (not joking; I just finished clapping my hands in the actual real world for you) for taking the time to make yourself better.

Maybe even as simple as reminding yourself every day: "Sucks now. Better later!"
posted by feckless fecal fear mongering at 11:08 PM on July 20, 2015 [4 favorites]

Oh, this REALLY resonates with me. I started a new medication about seven weeks ago and I am getting many of the side effects you mention (the almost constant low-level nausea being the worst). I try to be mindful of the times when I am lying quietly or walking in the sun or reading when I don't feel so awful and remind myself that this is time-limited - I am thinking of adopting "Sucks now. Better later!" as my new life mantra. There will come a time when the medication has done its job and I am better than I was. Until then I just have to power on through and rest in the gaps.

The other comfort I have is that the nurse who introduced me to the thing said that a lot of people find it makes them sick but she only knew of one person who had to come off it because they were feeling / being too sick. So I know I'm not alone in feeling so awful and I also know there are a number of other people going through exactly the same thing as me. Yay us - go Team Bleurgh!
posted by Martha My Dear Prudence at 12:33 AM on July 21, 2015 [1 favorite]

Definitely give yourself rewards! I used beeminder and had a weekly increase of I think about 5.5 (I would fiddle with the settings a lot at the start) so that if I was disciplined and every day took my meds (worth 1 point each day), within 2-3 weeks, I would hit a 7-day buffer and then I would give myself a little reward (what worked best was buying a treat for someone I love, because that was a double thrill) and then resetting the buffer to zero. I cycled that over and over until taking the meds was just part of my routine, and it felt like a tiny competition I could win often.

Also - is there a different time of day to take them? I made the spaciness of one med into a sort of virtue by taking it at the end of my work day so I had to stop working and could goof off and watch saved up trashy tv instead. And for the hair - buy awesome shampoo or really cute hats. Treat yo' self to balance out the crap in the short term.
posted by dorothyisunderwood at 3:04 AM on July 21, 2015 [1 favorite]

My perspective here comes from working with people who are doing treatment for Hepatitis C which is (historically) a year long bundle of crappy side effects due to the meds.

I facilitate the HepC support group, so... if there's a support group related to whatever you're doing, find it and try to attend. You will get hints and tips and tricks from other people who are experiencing those side effects that your doctor may not know. For example, one of the side effects a lot of our patients had was a very strong metallic taste in their mouth - making it hard for them to eat. One patient discovered that those little flavour droplets you add to drinking water helped a lot - if he put a single drop in the middle of his tongue. Totally not a medical treatment for the issue, not something our doctor would have thought to suggest, but the support group was thrilled to hear about it and try it.

The support group is also a good place to just vent about feeling shitty and about not feeling like 'yourself'. People who've "been there", or are currently there, can cheer you on and keep you motivated. You don't usually hear platitudes from people at support group - because they really don't want to hear those themselves - so you get good, honest empathy and understanding.

Use a journal to track side effects. Look for patterns. If the nausea is going to hit you every day at 2pm, or if you're going to feel exhausted every day at 10am, you can plan around it. It's also helpful to bring to your medical care provider - so they can see the trends (and sometimes help to ameliorate them).

Journalling your medical 'adventure' is also really helpful when you're finished treatment - most people don't instantly feel better when the treatment is over (a coworker likened it to a "dimmer switch slowly being turned up, rather than a light switch flicked to 'on'") and looking over a journal helps to identify the ways in which health is improving. One patient repeatedly talked about how his 'brain fog' was still awful - and was really down about it - until he read his journal and was able to see that no, in fact, things were improving.

It sounds like you already know this, but.. be really honest with your medical provider about whatever side effects you're experiencing. Our HepC nurses get really frustrated when a patient says, "Oh, yeah, I had X side effect for the first six months and I felt like I wanted to die." and there's a known work-around for that side effect! The patient suffered unnecessarily for six months simply because they didn't bring it up. It's not necessarily about adding more medications to treat side effects (though it can be) - sometimes it's just about tweaking things like when/how/with-what the meds are taken.

Acceptance is a big thing. You're here, this is what's happening, it sucks.. and that's okay. Be gentle with yourself. Don't push yourself to do things that you don't feel well enough to do. It's not an excuse to say "I can't do X because I'm taking these meds or having these side effects" - it's reality. Pick and choose the places where you expend your energy and feel good about that.

Keep your focus on the end goal. It's a year of feeling crappy in exchange for (presumably) a lifetime of being healthy. That's a pretty decent trade-off, ultimately.
posted by VioletU at 5:08 AM on July 21, 2015 [4 favorites]

If you're sure there are no other medication options, or no other drugs you could take to help mitigate the side effects, and your goal is to get better, you just have to accept the situation and keep taking it one day at a time. I just finished chemo and radiation for breast cancer. It sucked a lot. I'm still dealing with the fallout (weight gain, no eyebrows, mostly bald, loose fingernails), and it's not awesome, but what's the alternative? You want to be better.

Take your meds, appreciate and take advantage of the good days. Make a little chart to cross off the days left. You'll get through them. Someday it will be over.
posted by something something at 5:32 AM on July 21, 2015

are the side effects consistent, or do they vary? if they vary, you could start tracking your life to try work out what exacerbates the problems.

i guess it's obvious (well, prev point my have been too), but you can also look at changing your life round a bit to make things easier. do you work? can you work from home, or is there somewhere at work you can use for naps, for example? i have nowhere near your problems, but in my limited experience tiredness can often be fixed with a quick nap. also, my balance problems are very mild, but going to a gym for work on a bad knee has had the side effect of helping there (it's more a sports clinic than a gym i guess; the knee exercises involve balancing in various ways), as well as just generally giving me a boost.

also, you have the great advantage that it's finite. lucky bastard :o)
posted by andrewcooke at 6:18 AM on July 21, 2015

Response by poster: andrewcooke: I've been far too ill to work since 2010.

Without the meds, my level of possible activity is - have a shower (using a shower chair) every second day, load the dishwasher every second day, do a load of laundry every second day, lie down and sit down a lot. I use a power wheelchair if I leave the house, because I can't reliably walk more than 24 metres (78ft) without needing a rest. If I try to push myself past my physical limits, I literally fall over and hit the ground.

With the new meds, my possible level of activity is *lower* than this.

But the new meds will (hopefully) in the long term fix my permanent exhaustion.

(It's a multi-medication cocktail, including Plaquenil, for a bunch of chronic bacterial infections, including Lyme disease.)
posted by Year of meteors at 7:10 AM on July 21, 2015 [1 favorite]

This story is what I thought of immediately when I read your post. He did exactly what you're doing - taking a medication with awful side effects - and managed to continue beyond every other person in the drug trial.

Good luck. It sounds absolutely awful, and I hope it makes a major difference for you.
posted by guster4lovers at 9:06 AM on July 21, 2015

Find one position, or one physical state that puts you closest to normal. From there do the work of remembering the happy, well, upbeat you. Maybe a long bath, something. It will be worth it in those moments.
posted by Oyéah at 6:19 PM on July 21, 2015

Hey if you have a goal, maybe use the time as silly as this is to put together a dream board for when? Because it sounds like you are so exhausted now - so when you take your meds, make a ritual out of it, take them with a cup of something Not Water (nice juice?) in a pretty teacup, and with your phone on pinterest, sit down and browse and add pins to your boards for amazing fun things you will be doing at the end of this treatment - places you will go, meals you will cook, books you will read, etc. Use the time for taking the meds to be this positive little dreamscape for the future ahead.

I take my meds next to a poster of Leslie Knopes and some flowers with a note to "spoil yourself" to remind myself that I have to take care of myself and that Leslie would totally take her meds too.
posted by dorothyisunderwood at 6:47 PM on July 21, 2015