Adjusting To A Life With RA
I have Rheumatoid Arthritis. I also have a husband, four children, and a caboodle of animals to take care of. Easy, right?…Ha! Life was never easy for me. I was diagnosed with Lupus around the age of six, then RA a few years ago, so I am well acquainted with what a diseased life involves. My peers have always handled physical activities better than I, but I adjusted to “keep up” as well as I could. Though “keeping up” has become much more difficult the last few years. As I age, disease gets the best of me more often than it used to.
Learning my limitations
Adjusting to life with an autoimmune disorder is learning what you can and can not do. I try to plan my days accordingly. If I have errands to do throughout the day, I make my evenings as simple as possible. I plan easy meals on the days I have extra tasks to accomplish, so busy days = the kids get to eat chicken nuggets and boxed macaroni for dinner…(they love it)!
I can no longer be “on the go” all day. My body tires easily, which causes me to take more breaks –breaks usually involve putting on a movie and all snuggling into my big bed with the little ones for a couple hours. The kids occasionally need the wind down, though sometimes, talking them into halting their play involves my grouchy voice and a few moments of tears on their end.
When I take on bigger projects (this week-painting the kitchen cupboards), I have to do a little at a time. Ten years ago, I could have emptied my cupboards and had the painting done within a day or two. Now, I am on day three and I have at least another two days ahead of me. Not being able to work as efficiently as I once could, is driving me crazy. I told my family not to make plans for this week, knowing I wouldn’t be up for doing anything else. All of my energy will be consumed by the kitchen project.
My body is aching. I am worn out. I wish the kitchen was done already! Why in the heck did I start this project to begin with?
Trips are also a chore for me now. Rheumatoid arthritis makes traveling difficult. Sitting in a car for a long time tends to make my body stiffen and ache. At most, two hours is all my body allows before having to stretch my legs. My hips start to lock up after too long and I walk like the tin man (pre oil) trying to loosen up my joints. Activities that include plenty of walking are also hard on my body. I have to sit and rest my legs every so often. Each trip is done at a slower rate. Even my walking pace as slowed significantly. At times, my children grow impatient with my moderate speed. I have found that snacks help during these times….snacks always seem to brighten my kid’s disposition. At the end of the day they are happy just to have gotten out and done something fun.
Saying “No” and not feeling bad about it
There are days when I have to just say, “No.” Some days I wake up feeling terrible. I know those rough mornings mean my body needs to relax and recuperate. I can not push myself or I will be in worse shape. Sometimes this means cancelling plans. I have had friends or family become frustrated with me for changing plans. I used to really take their annoyance to heart. I have since learned that I need to look out for myself. Caring for myself has to come first. If I have to cancel plans, then so be it. A true friends understand my circumstance.
At times, my children are the ones being told, “No.” They don’t like hearing this, of course, but I can’t fault them for being upset. Children naturally have a ton of energy and have a need to be entertained. My oldest two have learned patience and empathy because of my disease. They understand when I can’t abruptly do what they ask. My oldest two have seen what happens when I push myself too far. They have seen me cry due the physical and emotional pain. My inabilities cause some resentment and emotional pain within myself. My kids know I want to do what they ask and they adjust to my inabilities better than I do sometimes.
Forgiving yourself
Forgive yourself. There will be days when you can not do it all. There will be days when my accomplishment is getting out of bed, just to hobble to the heating pad on the couch. There will be days when the dishes are higher than the sink and toys are taking over the floors. The dishes will get washed eventually. The toys will be put away and the floors cleaned, in time. I allow myself to procrastinate a bit. Allow myself to rebound before tackling the next task. Believe me, the mess isn’t going anywhere……it will all be there when I am ready to attack it. I often get anxious when my house is a mess. I had to learn to let things pile up a little. I am tense when I feel my house is dirty. Putting on blinders and chilling out has been a struggle for me, but I am getting better at ignoring the mess until my body is up to the challenge. I make sure to keep up as much as I can on my good days and then the mess isn’t as terrible after the bad days. My kids are starting to come in handy around the house too….which brings me to my last point….
Do not be too proud to ask for help!
As I said, my kids are coming in handy now. They aren’t as thorough as me when it comes to scrubbing, but having them try has been a helpful. I can count on them to at least pick up the toys or put the dishes away or vacuum the floors or even entertain the little ones, which may seem small, but every little bit makes my day that much easier. Occasionally, my husband will make dinner. Sometimes, not having to stand at a stove, is the best gift he could give me! I appreciate the assist.
For years, I did all the housework. I felt I was less of a mom for not doing it all. Keeping a clean house was always a priority to me. I would stay up after everyone else had gone to bed, just to make sure my chores were done for the day and my house was clean. I don’t know how I ran on so little sleep back then. Now, if I don’t sleep well, my body doesn’t function properly. Settling into the mess and just calming down has been so beneficial to not only my body but my mind as well. I am calmer and more appreciative of life when I am not busy trying to perfect everything. I couldn’t relax as much, if not for the help I receive from my kids and husband. Learning to let go and share the load is the best thing I could have done for myself.
You are not always in control
There are many things about your life and your day that you are in control of. Me, for example, I am in control of my everyday decisions. Decisions like: changing out of my pj’s for the day (or not), what to make for dinner (or not), if I leave the house (or not)….Most of the time, these decisions are solely mine to make. Occasionally, I have no choice but to ditch my pj’s, leave the house, and go to an appointment or some other plan I had made. If I feel extremely bad, even those days get cancelled….This brings me to my point about control. I can not control which days my disease knocks me on my butt. I can not control when I will wake up in all over pain. I can not control when I will be ill from either the medicines or from my lowered immune system (I seem to catch every “bug” that passes by). As annoying as it is to not always be in control, I had to learn to get over it. My advice is to stay as calm as you can, take a deep breath, and just hold on for the ride on those uncontrollable days. Stressing out only causes more grief for yourself.
