You Have Rheumatoid Arthritis
You wake up to the sound of your alarm, but immediately close your eyes again, as the exhaustion makes your eyelids feel like they have weights pressing down on them. You hit snooze several times, wishing you could stay in bed all day. However, you have commitments, so you open your eyes again, with more conviction this time, and set your determination to wake. You begin to slowly curl and unfurl your fingers, feeling the stiffness running deep throughout your hands, and you know it will take at least 30 minutes before they begin to loosen up. You rise to sitting, and have to pop your knees before they will allow you to swing them over the side of the bed. After rolling your ankles in circles and trying to squeeze the stiffness out of your toes, you take your first step, and pain shoots through your foot. You take a sharp inhale, move your foot gingerly a bit more, and then attempt walking again. Lumbering toward the bathroom, you turn on the water in the shower as hot as it will go, hoping the steam and heat will penetrate through the stiffness and ease away the pain. Standing in the shower, you wonder how you are going to make it through the day.
Or maybe you wake up a few minutes before your alarm goes off, and you actually feel rested. You smile, as you are so used to feeling fatigued that waking up with a feeling of energy is something you revel in rather than taking for granted. You become aware of your body, and you are relieved to discover that your body is not wracked with stiffness this morning, that you’re free of the feeling that your body is a shirt that’s been dipped in starch and left on the line to dry. You are able to get out of bed without any physical preparation. As you head to the kitchen for coffee, your toes and your ankles have a subtle hint of achiness, but this doesn’t slow you down. Rather, you barely acknowledge the feeling, as you have been in at least some pain every day for months or for years now, perhaps even for decades, and you have learned to push mild discomfort away from your consciousness, much as people who live near a paper mill become accustomed over time to the smell.
You have woken up to a “good day” where the pain will be manageable and you can feel somewhat productive, and you are grateful for this, because you can never anticipate how you will feel when you wake up in the morning. Some nights you go to sleep only after the assistance of painkillers or muscle relaxers, as the pain is too sharp to allow for non-medicated slumber, yet when you wake up in the morning the pain has evaporated. Other mornings you wake up after a fitful night of tossing and turning in a listless attempt to find comfort and you find the pain is every bit as sharp as when you went to bed. Still other mornings you wake up to inflamed joints even though you felt fine the night before. There doesn’t seem to be any rhyme or reason to this disease you have. While you have come to understand that, you continue to be infuriated with the unpredictable nature your body has taken on.
If it’s a bad day, where you feel the impact of each step you take through your swollen joints, minutes turn into hours. You pay attention to every subtle movement. Opening the car door and turning the key in the ignition is painful, as is each little bump in the road. The strain of maneuvering the steering wheel turns up the flames already simmering in your wrists and elbows. Unfortunately, reaching your destination and getting out of the car doesn’t improve things, as you still have to walk to your workplace and endure the pain of sitting or standing. When co-workers ask you how you’re doing, you’re not sure what to say. The honest answer would be that you aren’t feeling well, but you don’t know how this colleague will respond to the truth. Sometimes when you tell people you have rheumatoid arthritis they seem uncomfortable, or they make lighthearted comparisons to the osteoarthritis they developed in a single joint, assuming they understand how you’re feeling, or they make a statement full of pity and disbelief that someone so young could have arthritis. None of those sentiments will make you feel any better, and you worry about the risk of seeming less competent or valuable for having a disease, so you decide to respond that you’re doing well or feeling pretty good, and you go on with your day.
When you finally make it home, you are exhausted. All you want to do is lie down. Depending on how much pain you are in, you may honor that desire or you may continue trying to push through the discomfort and fatigue that weighs on you like a wet wool blanket. Regardless of whether you lie down once you enter your home or wait until bedtime, you will lament the things you did not get done during the day. You had a full to-do list, but your pain and fatigue thwarted your good intentions. Feeling the RA through your body makes each step feel like trudging through knee-deep snow, so you go at half-speed. You know that your immune system is confused, that it is attacking the good guys with “friendly fire” instead of fighting intruders. You know that you have a disease. Yet, you still are surprised by the huge impact of these symptoms on your life, somehow unable to lower your expectations of what you can achieve in a day. You want to accomplish on a bad day what you can accomplish on a good day. You are frustrated. Over and over and over again, you are frustrated.
When it’s time to go to bed, you may be able to fall into slumber with relative ease. Or you may have a series of preparations that involve topical ointments or patches to assist with the pain, or use splints or heating pads, or you may take medications to quiet the symptoms enough to sleep. You will arrange your many pillows just so, ensuring that your joints have as much support as possible. Then, whether quickly or after several minutes or hours of insomnia, you will fall asleep, having no idea how you will feel when you next wake up.
Does your RA impact you financially?