PARENTING WITH MULTIPLE SCLEROSIS

It’s late fall 2020, and I’m experiencing a flare. I have lost my mobility, and I am bedridden. My son Micah came into the bedroom with a big smile. He jumps on the bed and pulls my arm, motioning me to get out of bed. Micah is autistic and does not understand the depths of my illness. He has a puzzled look when I do not move. I whisper to him, holding back tears, “Mommy can’t play right now, Micah. Go find Daddy.” He pulls my arm a few more times before giving up. As he left the room, I could see how sad he was. I’m his playmate. Why won’t I play with him? He is too young to understand what is going on. I watched him leave the room and silently cried tears of guilt. What kind of mother am I? 

After being diagnosed with multiple sclerosis (MS), I felt tremendous guilt. I feared my son would live his life to take care of me. I thought I had failed as a parent, and time helped me gain perspective. I now understand I have not failed as a parent. I have a chronic illness, and that is okay. As an MS parent, it’s critical to prioritize self-care, communicate with your family, accept help, plan, and be gentle with yourself. Here are some tips that I’ve found helpful.

Listen to Your Body. 

I understand the urge to be a super mom. I was taking everything on without asking for help. Despite feeling out of it, I would push through. If one of your consistent symptoms is fatigue, going past the point of exhaustion worsens the next day. Pace yourself, listen to your body and stop when needed. 

Make Self-Care a Priority.

I cannot say it enough; you can’t pour from an empty cup. Once I had my son, he was my only focus. It was so bad, I believe, that I did not have a cup at one point. I completely lost who I was, and my identity was being a mom. Self-care is critical for managing MS symptoms and maintaining overall health. Finding time for self-care as a parent with MS can be challenging, but it is vital to prioritize it. That can include taking regular rest breaks, practicing stress-reduction techniques such as meditation or yoga, or adjusting your daily routine to conserve energy. You are useless to your child or yourself if you are burning the candle from both ends. Remember, you are doing your best. You are a great mom, MS, and all! 

Keep Communication With Your Family.

I struggled to be open and honest about my illness. I thought it made me weak. I’ve learned that leaning on my village is not a weakness. Communication is essential when parenting a child while living with MS. It’s critical to talk to your family about your MS and how it’s affecting your daily life. This can assist in setting expectations and avoiding misunderstandings. It can help your children better understand your situation.

Accept Help and Support.

Asking and accepting help can take some of the burdens off of you. My family regularly takes my son on the weekend. That offers time to relax and do some self-care. There is nothing wrong with asking for help when it is needed. This does not make you weak or a bad mom. When you need help, don’t be afraid to ask for it from family, friends, or professionals. Asking for help is a sign of strength and can help you manage your MS and parenting responsibilities more effectively. Support groups, online communities, and caregiver services are among the many resources available to parents with MS.

Make a Plan and Write Down the Important Stuff. 

I can’t stress it enough, planning and writing down the things that matter is key. I could barely remember my name between brain fog, being in my 30s, and general adulting. To keep everything organized, I use the calendar app on my phone to send reminders. Plus, I put handwritten notes on my fridge for important dates at my son’s school. Planning ahead of time can help you manage your symptoms and reduce stress. This could include meal planning, scheduling appointments and activities ahead of time, or hiring a caregiver. It is critical to be realistic about your abilities and limitations and to make necessary adjustments.

Give Yourself Grace.

Trust me, I understand; it is hard to be positive when you have a lifelong chronic illness. Some days I feel awful. It’s important to remember that you’re doing your best. Be kind to yourself and celebrate your accomplishments, no matter how minor they may appear. Remember that everyone’s MS experience is different, and what works for one person may not work for another. Keeping a perspective of all the good in your life can help maintain a positive outlook. Accept the bad days because they will come. But understand bad days do not equal a bad life. We can still enjoy life with MS.

To summarize, parenting with MS presents unique challenges and a journey of love and strength. You can better manage your MS and parenting responsibilities by prioritizing self-care, communicating with your family, accepting help, planning, and being kind to yourself. Remember that you are not alone and that there are numerous resources to assist you on your journey.