February 28, 2023
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Photography by Robert Kohlhuber/Stocksy United
RA symptoms don’t always respect your plans. On-hand emergency kits and self-care remedies are just some of the ways I respond.
If you have rheumatoid arthritis (RA), you probably know that symptoms can occur at the least convenient times. Symptoms of pain, swelling, and fatigue can be unpredictable and flare at random.
We have all been walking into an important meeting when the fatigue and brain fog hits you out of nowhere. You have been looking forward to a concert with your friends, but your feet swell up the morning of the event. Maybe you’re due for your injection or infusion, but it coincides with a high fatigue day.
You may find yourself saying, “Not now, RA!”
It can be so disheartening. It can uproot everything — your day, your expectations, not least the progress you thought you were making.
Here are some tips I’ve used to respond to symptoms at a moments notice.
If you notice a sudden symptom, flare, or simply aren’t feeling as well as you would like, take a 5-minute break.
Just like electronic devices, sometimes we just need to do a hard restart or unplug for a few minutes.
For me, taking a small amount of time to reset my head space can be enough to readjust my expectations and put everything into perspective. During these breaks, I always prioritize being kind to myself.
If you’re in a meeting or at an event, it’s OK to simply say “excuse me for a moment” or “may I please have 5 more minutes to prepare?” You can choose to elaborate with more details, or you can simply excuse yourself. Remember: There is no requirement to explain yourself later if you don’t want to.
Always remember that you can call in sick. You are human and humans get sick. Period.
Whatever job you have, and whether or not you have to physically call someone, make sure you “call in sick” to yourself. Let it sink in, and let go of any guilt. Take a self-care day and make sure to relax.
I know this can be difficult to do at a moment’s notice. You might have deadlines or caring duties. But try to give yourself kindness and time off in whatever manner is possible. This might mean having your favorite journal or book on hand, or even doing some meditation for 10 minutes.
If your unpredictable symptoms of RA can be managed with as-needed medications — also known as PRN medications — keep them on hand. This might include acetaminophen, ibuprofen and other NSAIDs, anti-nausea medications, and muscle relaxers.
It’s important to discuss whether you can use these medications as needed with your doctor. For example, anti-nausea medications and muscle relaxants may usually be PRN, but others might not be. These medications can provide temporary relief for a myriad of symptoms in a time of need. But their use depends on your individual health needs.
There are also some other options. For example, sipping on certain types of tea, such as peppermint and ginger, can be a great way to treat nausea. Heating pads can also be a particularly effective method for quick pain relief too.
I recommend making a small emergency kit with PRN medications, teas, heat pads, and any of your own quick relief remedies. This way, when you’re hit with sudden symptoms, you’re not digging through cabinets and drawers.
When it’s clearly labeled, other people can help you too.
Nothing makes a situation worse than trying to explain to a supportive spouse where something is when it’s located in the third drawer, back corner, inside the purple bag… we have all been there!
It can also help to have spares in different locations. For example, I keep a small emergency kit in my car, at work, and even at home.
Nothing says “back off” to RA quite like having — you guessed it — a detailed management plan.
I know what you’re thinking. RA will always be unpredictable, no matter how organized you are with your management plan. But I still believe that my long-term habits play a role in reducing the number of unexpected flares and symptoms.
Being consistent with your management also helps to rule out triggers and learn more about your RA.
Take your RA medications as prescribed to optimize medical management of your symptoms and flares. Refill your prescriptions on time and avoid missing doses by using a pill organizer or app on your phone to remind you.
Schedule your in-office infusions or medications well in advance too. In the event of a reschedule or a supply shortage, you will be prepared and this will give you some flexibility.
If you have a big meeting, a big event, or a scheduled medication that you know has side effects, plan around it. I find that it helps to schedule downtime before and after any events that deplete my spoons.
If you can, make accommodations for yourself and consider taking the day before a big event to prepare notes, lay out clothes, and organize other items that you may need.
A big part of my journey with RA has been changing my approach and mindset.
I know I can’t always anticipate my RA symptoms, but I try to anticipate the unpredictable. This way I’m always prepared for anything that comes my way. Sometimes the best offense really is a good defense.
Acceptance therapy is one method that could help you to think of your RA differently.
Boosting your body’s natural defenses can help with the common cold, influenza, and other viral illnesses, which, like RA, can also strike at the most inopportune time.
Other infections can be exacerbated by RA and can be a trigger to make RA symptoms worse. So trying to protect yourself from other infections can reduce the chances of unpredictable symptoms.
Eating lots of nutritious foods is always beneficial, but be sure to remember other simple practices as well, such as good handwashing, drinking water, and getting lots of rest and sleep.
Prepare your employer for some unpredictable symptoms and flares that might cause you to miss work. If your employer is large enough, there are two laws that provide some protection for those living with chronic illness in the United States.
The Family and Medical Leave Act (FMLA) allows employees to take up to 12 weeks off each year for medical or family emergencies, but pay is not guaranteed. This protects their job while the employee is away.
The Americans with Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off. Be sure to file the appropriate paperwork to be protected by these laws. Have questions about the Americans with Disabilities Act? Check out the Job Accommodations Network.
It is against the law to discriminate against a disability. For further information on filing a complaint check out the Equal Employment Opportunity Commission.
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