A 43-year-old mother of two shares her story of what it’s like to live with severe rheumatoid arthritis.
I’m a wife and mother with RA…
Mrs. K.D. is a 43-year-old wife and mother of two children and suffers from severe rheumatoid arthritis. This is her story…
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 people 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 one’s teeth, getting dressed, making meals, and even driving a car, are extremely challenging for me.
A day typical day with rheumatoid arthritis
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 premade snack packs to accompany their sandwiches. I use a knife with an oversized 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 today, 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 Sjögren’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 Sjögren’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.
Getting dressed, despite RA pain
Getting dressed is “challenging.” I tend to use clothing that does not require much buttoning. It is very difficult for my fingers to work a button. Many of my shirts are pullover or have Velcro attachments. I do have a button hooker that I use when buttoning is needed. My bra can be fastened in front and reversed or I ask my husband to fasten it for me. Most of my pants have elastic waistbands and do not require buttoning or zipping. My shoes are especially wide and most often during the day I wear running shoes for comfort. My job is taking care of my household, so I can basically dress for comfort and don’t have to dress for fashion!
I am in a carpool for the children’s school, and today is my driving day. Getting into and out of the car is slow, and I always appreciate it when one of the kids opens the door for me. I have a special key enlarger attachment for my car and house keys, which makes it easier to turn the key. Operating the vehicle is doable but often causes joint aching in my wrists.
Exercising with rheumatoid arthritis
At home, I like to exercise every day. I start with a variety of stretching exercises to loosen up. I then usually either ride a stationary bike or go on a walk. Once a week, I use our neighborhood pool to swim. Exercise makes me feel good and seems to give me a sense of control over my body.
Like any family, our household chores are endless. I make good use of attachments to the vacuum that help me get to places that are hard to reach. Our door handles are lever-style instead of knobs, so that it is easier for me to turn them. I only rarely do any ironing and have the luxury of knowing the dry cleaner by name. The children are pretty good about tidying up their rooms.
|Read on: Living With Rheumatoid Arthritis (RA): One Woman’s Story|