I have rheumatoid arthritis and would like to share with you the details of what a typical day is like for me from start to finish. This entry is not about my disease itself or its treatment, but about the way it affects what I do throughout my day. I hope that by describing the details of what my day is like, people will be more enlightened as to some of the experiences persons with rheumatoid arthritis must endure regularly. I also hope that sharing these experiences will make it easier for acquaintances, friends, and family members to interact with those who suffer from this disease.
By way of background, I am a 43-year-old wife and mother of two grade schoolers and have had severe rheumatoid arthritis now for nearly 10 years. My husband is understanding and supportive. My disease has caused deformity of my hands and feet. My fingers are recognizably gnarled and have bumps, called nodules. My wrists have nearly fused so that I can move them very little. My toes have cocked up and I have calluses under the pads at the bottoms of my feet. My knees are chronically slightly swollen as are many of the small joints of my knuckles.
Things that most people take for granted -- for example, sleeping, bathing, brushing your teeth, getting dressed, making meals, and even driving a car -- for me, are extremely challenging.
Rheumatoid arthritis (RA) is perhaps the most common inflammatory arthritis in the world, says Gary S. Firestein, MD, professor of medicine, dean and associate vice chancellor of translational medicine at the University of California, San Diego School of Medicine. In the United States, an estimated 1.3 million people have the disease, and it affects two to three times as many women as men. And RA may be on the rise in women, according to a 2010 Mayo Clinic study. After decades of decline, the incidence...
My day begins after what I had hoped would be a fair night's rest. When I sleep, I typically need to shift from side to side in bed because my shoulders become stiff and sore when I stay on one side for over half an hour. After sitting up at the side of the bed, I am careful to stand slowly since my knees, like all of my joints, are particularly stiff in the morning. I slowly make my way to the kitchen and prepare coffee and lunches for my children.
Because my finger dexterity has been impaired with my deformities, I favor the pre-made snack packs to accompany their sandwiches. I use a knife with an over-sized grip handle to spread the jellies and peanut butter on the bread. To open jars, I use a lid gripper pad. I screw the lids back on loosely so that next time they are more easily removed. Fruits are added with no extra preparation necessary from me.
The kids prepare their own breakfast cereals. I eat toast with jelly and have a bowl of cereal. With my breakfast, I take my medications. Each of my bottles has an easy-open lid for patients with arthritis. Because my joint pains were particularly bothersome this day, I added acetaminophen (Tylenol). I must place my medications well out of normal reach of the children since many of them contain chemicals that could be harmful to them.
After breakfast, it's time for my morning hygiene routine. Using a toilet can be challenging to someone with significant arthritis of the hips and knees. In my home, I have added inexpensive plastic raised toilet seat attachments to the toilets. This means that I do not have to strain my joints sitting down and getting up.
I have found that an electric toothbrush does a better job than I can do operating a brush with my hands. My arthritis is complicated by severe dryness of the mouth, called Sjogren's syndrome, which makes me susceptible to tooth decay. I must visit the dentist very regularly and brush and floss regularly. I cannot floss without the assistance of a "Y"-shaped floss holder.
The Sjogren's syndrome also causes dryness in my eyes and I must apply artificial tears now and throughout the day to maintain normal moisture in my eyes. Because of this dryness, I am unable to wear contact lenses.
I undress from my nightgown and shower while waiting for the morning medications to start working. I like my shower particularly warm as it seems to help my joints loosen up. Shampooing my hair is sometimes difficult with my hands and I have adapted the use of a scrub brush for my hair. I must be very careful entering and leaving the shower because the instability of my legs puts me at risk of falling. I dry off with a towel in front of a space heater fan.
As you can see, for me, it is not a matter of jumping out of bed, quickly fixing lunches for my children, and a quick shower. It is more of a calculated process using tools I've found that help me adapt and accomplish simple tasks.