Sung to the tune of “My Favorite Things” from the Sound of Music:
Alcohol wipes and bright yellow vials
Sterile syringes and I cannot smile
Brown paper packages filled up with meds
These are a few of the things that I dread
When fatigue bites
When the pain stings
When I’m feeling sad
I simply remember relief that it brings
And then I don’t feel so bad!
It’s not a matter of forgetting to take daily and weekly medications. Using a seven-day am/pm pill box keeps me on track. I simply just don’t want to inject myself. The thought of it as I type this makes me squeamish.
There are a few reasons I’ve narrowed down my distain for this particular medication:
- The smell. The sterile wipe makes me nauseous.
- The view. The sight of the yellow medicine in the vial makes my eyes roll back.
- The touch. Holding the syringe seems to make my stomach turn.
- The aftermath. Taking this medication will undoubtedly haunt me through the night and the following day with unrelenting fatigue and the sudden urge to vomit.
It’s everything.
Full disclosure: If my doctor were to ask if I’ve been staying on schedule with all of my medications, I’d have to say no. Today was not my designated day to take my “weekly” dose of this medicine — I’m actually three weeks behind.
In my defense, at the time I wrote this, I received my Shingles vaccine and flu shot a few weeks ago. I planned to skip a week of the injection to give the vaccines a chance to work the best they can. Then I planned to get the next booster of the Covid-19 vaccine, so I skipped another week. A sinus infection prevented that, so I held off yet another week on the methotrexate injection.
With all of this delay, I should have been worried about a bad flare or inflammation building up behind the scenes. The thing is, I felt more relieved than worried; I hate the medicine that much.
Changing Views on Meds
In the beginning, it was exciting starting a medication to help me feel better and slow the progression of joint damage caused by my inflammatory arthritis. When my rheumatologist suggested switching from this medicine in pill form to an injectable form, the intent was to alleviate stomach upset.
Using a syringe was foreign, causing me to feel scared and anxious. A compassionate nurse offered to teach me how to inject myself using a stress ball and a syringe full of water. Repeated practice each week with actual medication quashed any lingering nerves.
Months later, I could have injected myself with my eyes closed. This continued week after week after week after week. Over the years, I’ve wondered how much this particular medicine is helping me. I even asked two different rheumatologists if I really need to be on it and if I could stop it altogether.
The choice, they said, is mine in the end, but I should know that stopping this medication could lead to hidden inflammation that can cause pain, swelling, nodules as well as permanent and irreversible damage.
It’s hard to counteract that response with “I’ll take my chances.” What if I’m wrong and I have permanent joint damage along with additional pain, joint swelling, and fatigue? Are the reactions I’m having to simply seeing my medication or even the sterile wipe package all in my head? How do I get them out of my head?
Reality check: If I’m deciding not to stop my medication for fear of the consequences, then I need to change my behavior.
Steps to Overcoming “Med Dread”
I took a few steps to get through this med dread — try a few and see if they work for you,
Communicate with Your Health Care Provider
I spoke with my doctor about my hatred for taking this medication. He reinforced the benefits of continuing it. We discussed decreasing the dosage but monitoring my disease activity with bloodwork.
Do Some Research
I researched self-injection tips. Suddenly I didn’t feel so alone in my battle. Many people garner fatigue at something they do every single day or week for years. Whether it’s being in the same job for years, cleaning the same furniture, or taking medications, repeatedly doing an activity can result in a lack of motivation or even animosity toward that activity.
Seek Support
I sought support from other people with chronic conditions. Author and actress J.G. Chayko knows all about medication fatigue. You can read more here about how she got past it.
Find Healthy Distractions
I found a way to escape my med dread. Distractions are the key to making my self-injections possible.
How I Escape
Read below about how I made an “escape rheum” of sorts to get over my medication obstacle. Before entering the escape rheum, prepare by meditating or doing breathing exercises. Calmness is key.
Listen to a podcast
My favorites for medicine time are Smartless and Quitters because I can jump in and out of them without having to remember where a mystery left off. GHLF also has an entire network of patient-friendly podcasts you might want to check out, here.
Watch Instagram reels
Random flipping through IG reels keeps my mind off what I’m doing to get through injections. If you’re new to self-injections, you should pay close attention to what you’re doing. After a while, you become pretty savvy at filling syringes, but always make sure you are filling it with the correct dosage.
Listen to an audiobook, music video, song, show, or movie
If you are at home and in the middle of a great movie or show, that’s a great time to get ready for your injection. You are already mentally invested and distracted, so pause the show if you need to as you prep materials then restart it when you get ready to inject. It makes things so much easier. Singing along to my favorite song also gets me over the med dread hump.
Turn on a random YouTube video of how to do something interesting
My daughter got me into “Mystery & Makeup” with Bailey Sarian. Watching Natalie Sideserf create a masterpiece cake is mind-boggling and a terrific distraction. Check out Sideserf Cake Studio on YouTube. How does she do that?
Look at a comforting photo and recall a favorite memory
Sometimes I open a photo on my phone or grab a picture frame and bring myself back to that moment.
Visualize yourself putting your medication away
Visualizing myself completing something difficult has helped me in my life at so many crucial moments. Close your eyes and picture yourself putting that medicine container back in the cabinet. Tell yourself that the injection will happen and it will also be over soon so you can move on with your day.
Reward yourself
Adults need rewards, too. Plan out your reward before you prepare for the injection so you have something to look forward to getting or doing. It can be small. I have a bag of cookies I can’t eat from often so I take a cookie after my injection. It switches my brain back from thinking about the medicine to enjoying the cookie. I also use a self-care app to remind me to take my medicines and it rewards me with points.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
