Running low on battery

One of the main symptoms that I’ve encountered with Rheumatoid Arthritis is fatigue. The level of fatigue has varied throughout the years, but it has always been there. At first, I thought the fatigue was a side effect of my medication (which, in some cases, it is) but as my medication changed throughout the years, I realized the fatigue was always present, no matter what medication I was in. Because of this fatigue that just feels eternal, I’ve figured out some shortcuts so I can get on with my daily life; and am now able (most days) to do everything I need to accomplish in a day.

The first thing I learned, I learned the hard way; just because I have enough energy to keep going right now, doesn’t mean I should keep on going full throttle. Why? After whatever it is I’m doing right now, I still have things I need to do later, and if I use up all my energy on the first task, the rest of the day I’ll be too exhausted to do anything else. I actually learned this taking a walk. Halfway through my walk, I started getting tired; but I knew I had enough energy to keep going, so I decided to push myself and keep going. I made it to the place I was going; but I had no remaining energy to get back to where I started. I had to ask my cousin (who was walking with me) to send someone to go pick me up, which made me sad instead of empowered by my walk. That day I learned that my body has a certain amount of energy to give me, it’s not anything close to what a healthy person has, but it’s what I have to work with, so I need to manage my energy in a way that works for me and my lifestyle.

Another thing that has greatly helped (but I must confess, I don’t actually do anymore) is exercise. Since I was diagnosed, everyone always told me I should exercise and do my therapy… but I felt SOOO TIRED! They said exercise would help with the fatigue, but that didn’t make much sense to an exhausted teenager. About 4 years ago, my girlfriends and I decided to go to Vegas for my birthday and I decided I was going to get fit enough to be able to walk as much as I needed to in Vegas, and I was going to look good doing it. I joined a gym, got a trainer who knew I had RA and did research on what I could and couldn’t do. I always left the exercise until after work, so whatever energy I had left in the day was all going into exercising, but I quickly figured out that I was having more and more energy everyday. I felt better, stronger and more energized than I had in years.

After the gym, I didn’t go back to my original weight, but I was still at an average weight for my age and height. I’ve never had a real weight problem, but when I started taking prednisone, I gained 20 pounds in 3 months, and I noticed a change in how much energy it took me to get from point A to point B. Not only is maintaining a healthy weight excellent for keeping your energy levels higher, but it will help keep all that extra weight off of your joints and keep them healthier longer.

Something that I’ve suffered through pretty much since I can remember is insomnia. Not getting enough sleep is terrible for anyone, and for someone with chronic fatigue is even worse. Some people don’t have insomnia, but do have problems getting enough sleep either because they have too many things to do, or too many things to think about; this is counterproductive… The next day you won’t have the energy to finish what you started the day before or do what you were up all night thinking about. Get your 8 hours of sleep, and take some breaks throughout the day.

Cut yourself some slack, you’re not superman. For me, showering is very exhausting, so after I shower, I lay down for about 30 minutes; I don’t sleep, I use the time to go online, or read a book for enough time for my body to recover from exhaustion. After this 30 minute break, I feel re-energized and can keep going on with my day without feeling extremely tired. The way I see it is, if my phone is running out of battery, I charge it; I don’t expect it to keep working for hours and hours on 5% battery… why expect my body to get through an entire day on 5% energy?

On the other hand, there’s also the problem of sleeping too much, or simply not wanting to do anything. These are usually signs of depression, if you’re depressed, get help. Whether it is in a support group, talking to friends, with medication, or talking to a counselor. Depression causes even more fatigue and pain than what you normally would have with RA and the medication side effects alone. You don’t want to just “suck it up,” talk to someone who can help you through it, and get supportive friends and family to try to help motivate you to get out of bed.

Talk to your doctor, some medication for RA actually helps with fatigue. Some 9 years ago, or so I started taking Remicade, now I don’t know if this is normal for other people, but the day after my infusion, I felt like I had the energy to run an entire marathon… I noticed, however, that as the month between infusions was coming to an end, I felt extremely tired all the time just like my body was running out of battery. But, I enjoyed the fact that most of the month, I had much more energy to do everything that I needed to do. Remicade stopped working for me, and I haven’t felt that reaction with any other medication, but every body is different, you may not have that reaction to Remicade, but talk to your doctor, there may be something he or she can do to help by adding or removing certain medication.

Explain to those around you that fatigue IS a part of RA. Getting people to understand the fact that you’re not being lazy, you’re just too exhausted is not an easy task but a necessary one. When I was first diagnosed, I was falling asleep all the time, the fatigue was so overwhelming it was just making me fall asleep everywhere. I made sure my family and my teachers knew that I wasn’t suddenly suffering from narcolepsy as well as RA, but that I was just severely exhausted. I’ve since have come to have to explain to friends, boyfriends I had in the past, co-workers, bosses etc. It doesn’t always work, and even the ones who do understand are not always supportive, but it’s better than going through life feeling misunderstood by those around you or trying to overexert yourself so people won’t think you’re being lazy.

The struggle with fatigue is constant, but manageable if you do at least some of these things. There are many factors that can alter the amount of fatigue you’re feeling, but if you counter those negative factors with positive healthy habits, I think it kind of balances out. Remember to take it easy on your body, you’ve only got one and it’s attacking itself, so you have to work extra hard to make sure it doesn’t get any more damage than what it’s already doing to itself.