Parents with MS: Please tell me I am not insane.
During my last relapse, I experienced a very sudden and dramatic loss of vision in one eye, and I immediately went to the ER (my former workplace and my husband’s current workplace.) I am very comfortable there after ten years as a nurse, and the staff are basically a second family to me. I am very fortunate to have them, and they always treat me like a queen when I have to visit.
They provide me with warm blankets, food, and the much needed care I require. My last relapse happened on a Friday, and the outpatient infusion center is closed on weekends. Normally, I receive my 3-day steroid infusions there, and stay at home rather than the hospital. This time, however, the weekend would prevent that. My Neurologist recommended admitting me to the hospital during the 3-day course of IV steroids. Most people would see this as a bad thing. Parents with MS- not so much. My mind immediately thought of what an amazing break this might be for me!
Three days of rest? Peace and quiet? Meals brought to me while I lounge in bed? Every need met for me, while I relaxed and recovered? That sounds like heaven.
Parents with MS don’t get any of those things at home. Children are demanding, regardless of my physical condition. They don’t understand when my energy is low, and I am not myself due to a relapse. They still have needs, and my husband still has shifts to work, despite my illness. I knew in my heart I wouldn’t get the much-needed rest I required at home, and I started to say “sounds great,” when offered a hospital stay. Before I could get the words out, my husband and nursing friends began making special arrangements for me to receive my infusions in the ER, going home in-between, convinced that I would never want to stay in the hospital for 3 days. Who would? My heart sank. But, I felt too strange saying, “No! Let me stay in the hospital!”
At that point, I realized that I had really lost it.
I had fully transitioned from the competent healthcare provider to the exhausted, debilitated patient I had cared for so many times before. I was officially in need of the nurturing I had given for so many years. It would be one thing if I had a quiet, relaxing, peaceful home to return to to heal…but that was not the case for me. I had many little ones depending on me there, and this offered to time to recover and heal.
This is the predicament many parents with MS find themselves in. I am not alone in this experience, I am sure. We simply don’t get the chance to heal and rest the way others might, and at this point I was feeling quite sorry for myself. As I returned home, I feared the worst. I feared that I would be overwhelmed with responsibilities and obligations, neglecting my own body and needs as always.
The lesson I learned at that moment was that I needed to be my own advocate. I needed to express my needs to my loved ones, to communicate what I was feeling more than ever. At times like this, I need to clearly state what I was and was not capable of doing, and give my family a chance to provide for me. The moment I spoke up and stopped pretending to be the “hero,” the help was all around me. I had a neighbor offer to cook meals and watch my children. I had my mother who was immediately in my home, cleaning and picking up groceries. I had friends who offered to bring coffees, and a husband who spent his days off taking care of me. I was overwhelmed by the love and support I felt at that moment. I realized that I had made a mistake in the past, keeping my feelings locked inside and refusing to admit that I needed help. I needed to be honest, and I never needed to feel alone. I now know how fortunate I am to have so many in my life who care about me, and even the kids were happy to pick up a share of chores. The lesson is, don’t ever feel guilty asking for help like I did. Don’t keep your feelings inside, feeling frustrated and alone. Speak up, reach out, and ask for help. You may be pleasantly surprised at the love that surrounds you.