I’m the proud mother of an 11-year-old son. I’m quick to boast and tell you about Ryan’s curiosity. (He asked me what the nurse does with his blood after a blood test. In all my years, I had never thought to wonder). I’m quick to brag about his kind heart (without prompting, the way Ryan holds Grandpa’s hand while walking through a museum and slows his steps down to match Grandpa’s). I’ll smile and tell you how Ryan loves to dance and sing and is equally entertained by the Beatles, Stevie Wonder, Justin Timberlake, and Prince.
But I’m not as quick to talk about myself. I don’t immediately tell people about my invisible disability, the rare autoimmune disease coursing through my body (and on bad days, I think it’s cursing my body). It’s called Undifferentiated Connective Tissue Disease and has overlapping symptoms of lupus, myositis, and rheumatoid arthritis.
For me, it means I experience pain, fatigue, and weakness in my legs with my left leg always worse than my right. It means it’s difficult to climb the bleachers at my son’s basketball games, so I always arrive early to find a spot on the lowest row. It means I can’t volunteer to chaperone my son’s school field trips. It means it’s painful to sit on the living room floor when we’re involved in an epic game of Monopoly and then it’s a struggle for me to get back up again.
I look fine on the outside. Most people generally aren’t aware when I’m hurting, when I’m having a flare, or even just a really bad pain day. I was diagnosed eight years ago, but it’s not easy to talk about. And yet, when I do share my story, I realize how many other mothers are also dealing with outwardly invisible, painful medical conditions.
Through the years, I’ve developed some “tricks,” coping strategies that help me. They don’t make the pain and fatigue go away. But they help get dinner on the table, they help get the house cleaned, and they help me feel like I’ve earned a (theoretical) victory dance.
I hope they help you too.
- Use a disabled parking placard. I fought this for a long time. I don’t look handicapped, meaning I don’t rely on a walker or wheelchair or even a cane. I felt I didn’t deserve a placard. Yet my rheumatologist looked at me like I was a bit crazy when I asked him if he thought I’d qualify for one. As a friend reminded me, I don’t have to use it, but it’s nice to know I can. I use it when parking at meters so I don’t have to try and rush out and beat an expiring meter when my son’s dental appointment takes longer than expected. Occasionally, I use it for designated handicap spots. Usually on our “bigger” outings—trips to museums, for example. I’d rather tire my legs out walking through the Natural History Museum as opposed to its parking lot.
- Add in extra time. When Ryan was young, I always built in extra time to our schedule for last-minute changings (diaper, socks, shirts), and/or for last-minute fusses and arguments (jackets, shoes, hats). Now, I add in extra time for me. Some days are harder than others, and I walk much more slowly on those days. It helps if I know that even at my snail-pace, we’ll make it from the parking spot to the school drop-off line in time.
- Break up chores. Just as I have taught my 11-year-old son to break up his longer school projects into shorter, manageable tasks, I break up household chores. Depending on my pain level, I may only water the plants on our back patio and save the plants on our front porch for the next day. It all gets done, just not as quickly as it used to.
- Think in multiples. We live in a two-story townhome. For a long time, scissors and tape were only kept downstairs. Now I have another set upstairs. Likewise, when my son was still in diapers, I kept extra diapers, wipes, and a change of clothes downstairs as well as upstairs in his bedroom.
- Outsource what you can. When I left my teaching career, I had a lot more time on my hands. Time I decided to invest in my home. There was no need to continue paying for a cleaning service when I was no longer working full-time. Except there is a need. I can’t physically do it. I don’t want to feel tired and cranky and in even more pain because I spent the morning cleaning bathtubs and toilets. We have now budgeted for a bi-monthly cleaning service.
- Be flexible about meals. We eat at home most of the time, because it’s economical and easier since Ryan is a somewhat picky eater. But, my idea of family dinner has expanded. Eggo Waffles count as dinner. So do “clean-out-the-fridge” dinners, when everyone picks their own meal, hopefully using up any leftovers. Sometimes, dinner is frozen butterfly shrimp and a cookie-sheet-full of shoestring fries baked in the oven and served on paper plates. Eaten together, around our red dining table, it’s still family dinner.
- Re-arrange cupboards. Many of our kitchen cupboards were stocked and filled shortly after we moved in almost 15 years ago. It took me a while to realize that I could re-arrange my cupboards and move items into more convenient spots. My brightly colored, only sometimes used, mixing bowls have been moved a few times now. For a while, they were kept up on a high shelf. But sometimes it’s hard for me to stand on my tiptoes. Then I moved the bowls to a low shelf which worked for a while until the night it was hard for me to bend and squat and select the bowl I needed. A major re-arrange, but now I can access the bowls much easier.
- Focus on little things. Many aspects of my life with a chronic medical condition are beyond my control. Which makes me pay even more attention to the things I can control. I must choose to focus on “little things” that make me happy. Happiness and smiles don’t take away the pain, but they certainly don’t add to it either. I keep a vase of flowers on our dining table and another on my bedside table. I light scented candles (currently, “Hot Fudge Sundae” is a family favorite). It’s important to find these “little things” and make them priorities.
- Find your support system. I didn’t have this for a while, but now that I do, it makes such a difference. You don’t have to find someone who has the same disorder, but someone else who struggles, who “gets it” is incredibly comforting. For me, it’s one friend with fibromyalgia and another friend with a spinal cord injury. We have different things going on in our bodies, but we understand that when we go out to eat, the comfort of the chairs is as much of a factor as the food we’ll be eating.
- Have something to look forward to. I see my rheumatologist several times a year. Whenever possible, I plan these appointments for a morning when my son is at school and my husband is off work. Because after the appointment, my husband and I go out for a breakfast date. It doesn’t make the doctor’s appointment more pleasant, but it helps a great deal to know that Eggs Benedict with my honey is waiting for me.
None of these tips make my illness go away. But they help me get through the day.
There are days when I truly believe “I’ve got this.” “I can do this.” Then there are days when Ryan finds me crying in the kitchen while preparing dinner. Days when Ryan knows I’m struggling and says I can use a “bad word,” and so I look at him and tell him that having this illness “sucks.”
And most days, I acknowledge the frustration and the difficulty that come with having a chronic medical condition by telling my son that it’s hard, but I’m trying my best.
And that’s the most important lesson I want Ryan to learn.
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