Life with rheumatoid arthritis (RA) is certainly no walk in the park. A disease marked by chronic pain, fatigue, and damage that leads to loss of mobility, the symptoms alone can be a lot to handle day to day. Being mindful of your physical limits, treating yourself with care, and a bit of trial and error can go a long way toward living better with RA.
In a world where we are expected to do it all, learning to pace yourself is perhaps the hardest aspect of managing chronic disease. It can be hard to let go of that idea, that you must be the one to do all of the things, but the fact is, the best treatment plans in the world will not be enough if you do not learn to listen to your body and respect it’s limits. Add the fact that those limits change from day to day and that you often don’t know you’ve overdone it until much later, and it’s no surprise that this is one very challenging balancing act. It’s a balancing act worth perfecting. Slowing down and stepping back are going to be key to your long term health. Both will allow you to preserve the quality of your life longer. Trust me when I say the job that leaves no energy or physical strength for the rest of your week to week or day to day life, is not worth whatever you are bringing home to go along with that pain and exhaustion. Finding work that is better paced for your body may well help keep you working longer, a very real consideration as 60% of RA patients become disabled within 10 years of diagnosis. If you want to avoid being part of that statistic, you are going to have to learn to listen to your body and treat it with kindness.
One important step for learning to accept your limits is learning to say no when you need to. You know your body, better than anyone else. If you know it will take 3 days to recover from an activity, say no. If you know going for that 3 mile hike today means you probably won’t be able to work tomorrow, say no.
No one else knows what your body needs, they can’t make these choices for you, and, perhaps more important, they do not have to understand why you do. Living inside a body that will literally stops parts from moving when its overexerted, is something few people will understand, no matter how much they assure you they do. That is perfectly alright. The truth is, you can’t really understand RA until you live with it, and you wouldn’t wish that on anyone. So bow out when you need to, those who love you will adjust to the new, boundary setting, you.
One key to setting and maintaining limits, will be asking for help when you need it. After all, dinner has to be cooked, chores need to be done, life will not suddenly get less messy simply because you can’t keep up. If anything, the opposite is true. So, learn to ask for help, and to let people help you when they offer. This is no time to be stubborn, take it from one who’s had to learn that lesson the hard way. It’s alright to let people help you. Far better to accept help than to burn yourself out doing laundry and cleaning floors and not have the energy left to play with your adorable kiddos. Sharing the household responsibilities will allow you to save your resources for more enriching things.
Don’t stop inside your household though. Asking for help must also extend to the outside world, especially those who help manage your medical condition(s). If you don’t tell your doctor you are struggling to walk, stand, or hold onto things, they won’t know. Not knowing means they won’t offer you resources that can help you. There is nothing much worse than suffering in silence for months only to find that a little physical therapy once a week could have eliminated the struggle. Ask me how I know. 😉 Learning to be completely open and honest with your doctors about what is challenging you, what is working and what is not, will help them to give you the best care possible. As important members of your RA team, they need all the facts. So stop telling them things are fine when they are anything but.
Speaking of doctors, one of the best pieces of advice I have for navigating medicine is, don’t be afraid to fire your doctor and move on. All specialists are not created equal. You are going to need a team of doctors you feel comfortable with, who listen to you and offer solutions. If they are dropping the ball in any of those areas, move on. Quality care requires a good doctor-patient relationship. if you don’t feel like they are listening to you, find someone who will. This is your health, your mobility, you are going to have to be in charge, but since you are no medical expert, you are also going to need help. Finding the right professionals will greatly increase the quality of life you are able to achieve.
I know, you don’t want to give up the cake. I don’t want to give up the cake either. Unfortunately cake is sugar, and things that your body turns into sugar. If you are fighting inflammation? Sugar is like gasoline on that slowly smoldering fire, it will cause a flare up. There are no exceptions to this rule, believe me, I have looked high and low for that loophole! The fact is, every single food we eat either nourishes us, aggravates our system, or both. Figuring out which foods your body tolerates and which cause it to pour gas on the fires of inflammation is not always easy, but it is worth it. Check out the diet and autoimmune disease section if you are ready to try and figure that out. As a general rule, if it’s high in sugars, even natural ones, it might be best to avoid eating it. Notice I said avoid not cut it out of your life forever and ever. We are only human, we are going to have that slice of cake now and then, at least I know I will. Choosing to limit that, will prevent you from constantly stoking the fire. A little bonfire now and then, may be worth the trouble, but burning your house down daily, is just foolish. I do not recommend it.
I do recommend fueling your body. Managing any chronic health condition without considering diet and nutrient balance is kind of like walking around with a blindfold on. Sure, you can probably get around the house alright like that, but you are going to get quite a lot of bumps and bruises trying to navigate, and it would clearly be easier if you could see what was in front of you.
Don’t ignore nutrition. We quite literally are what we eat. In the home that is your body, food provides the building blocks, if you are not giving the construction crew the materials they need, your house is going to be a carpenter’s nightmare. Without the right nutrients, your body cannot fight inflammation, it cannot build strong bones, it cannot fight off infection. Nutrients are involved in every single process your body carries out. A well balanced diet can help reduce fatigue, pain, anxiety, and stress. It can help you get more restful sleep. It can help you rebuild what RA is taking apart, as well as help to control inflammation. So, eat your veggies, proteins and good fats. Consider supplementing some of the vitamins that immune systems need for healthy function like Vitamins A, C, D, E and Zinc. Contrary to popular belief, feeding our immune system will NOT cause symptoms to worsen, in fact, several of those nutrients are involved in shutting inflammation OFF, quite essential and nearly always depleted in those of us whose bodies insist on turning inflammation back on.
When everything hurts, it can be tempting to be as still as possible, maybe even staying in bed or couch-bound all day. Unfortunately, that is about the worst thing a person with RA can do. The painful truth is, the more you keep your joints still, the worse they are going to feel. You have to move your body, gently and lovingly, but move it you must. Start with gentle stretching and simple joint movements. Roll your shoulders, wrists, and ankles, wiggle your fingers and toes, bend knees and elbows. If it is jointed, make it move at least a dozen times a day, minimum. If you can’t get up and do that, no worries, you can do all that in bed. For a great bed exercise routine and many others check out exercising with autoimmune disease.
If you are already active, mobile and ready to begin an exercise routine, start slowly, be gentle with yourself, and listen to your body. Be mindful always that overdoing it today may mean you can’t it move tomorrow. You want enough movement to strengthen your body and keep your heart healthy, but not so much that you destroy your joints and lose mobility. Stick to low impact exercise to protect your joints and future mobility. Be especially gentle with any actively inflamed joints. Exercise and physical activity is another tough balancing act, but perfecting it is well worth the increased mobility and reduced pain of a more physically fit body.
Nature Has Answers-
Have you ever told someone you had RA only to have them tell you their Grandma has that and she cured it with some plant? If you’ve had RA for more than a week, I bet you have. If you are like me, you probably thought their claims far fetched at best. After all, if turmeric was so great my doctor would recommend it, right? Unfortunately, probably not. Of the now dozens of doctors who have been on my medical team, exactly two have told me about the power of turmeric. Not because turmeric is not helpful, quite the opposite, in fact, even the science now agrees, it’s a wonderful anti-inflammatory, but medicine disconnected from nature somewhere along the way. Few and far between are the doctors who blend pharmaceutical medical remedies with natural ones. Considering how many of the medicinal compounds we use are derived from plants, or are synthetic imitations of plants, that seems rather foolish.
Being a lover of both science and nature, who will try literally anything once, I’ve come to find that, although there doesn’t appear to be a cure for RA, there certainly are a great many things that will help reduce its symptoms. As with anything else we use, what works and does not work for people, seems to be entirely individual. Turmeric, ginger, green tea, cinnamon, marijuana, and even a low dose of poison ivy (strange right? it works!) are some of the remedies from nature that keep me moving. I’ve also found hot wax, hot compresses, Epsom salt, and ice to be great for symptom management. So, next time someone offers you a wacky cure, consider it, you may be pleasantly surprised how much it helps you.
Living well with Rheumatoid Arthritis is not a simple path to navigate. There are no one-size-fits-all cures. What makes my body happy, might piss your body off and vice versa. Keeping track of your symptoms, the remedies you use, sleep patterns, and mood, may help you find a better way to manage your wellness. Check out our Free Printable Symptom Journal if you need a way to track and look for patterns. Taking the time to get to know what your body needs to be well, is definitely worth it. You are worth it.
Disclaimer: I am not a doctor, I am just a girl with RA doing my best to manage it and sharing what works for me. Always consult your medical professionals before making changes to your healthcare routine.