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My husband, and I have been living with Acute Intermittent Porphyria & Chronic conditions since the day we got married on June 6th D-Day! Was that a sign we were doomed from the start? I am the one diagnosed with chronic porphyria & other chronic conditions, but my disease affects everyone in my home & family, friends. I always knew my pain affected my daily life, what I did not know was how much it impacted my husband and family. Sometimes my pain is so severe that I cannot even think about another human nevermind recognize what it is doing to them.
When the reality of the pandemic set in our family stress and anxiety skyrocketed. I had my mom & sister staying with us in our house they were on vacation 3 weeks turned into months. I went months without being able to receive preventative medications. I became increasingly tired and irritable. Most days, I was in bed with pain. Looking forward I saw no signs of relief; I saw nothing but pain in my future. Because I was in such a negative space, I missed so many important things that were happening around me. My mom and I have the same disease AIP. One morning I woke her and had to bring her to my doctor for pain medication and treatment for an AIP attack. That day was a really nasty day for us both. Honestly I never want that day to ever recur again. Words, faces, actions, turn into arguments and hurt feelings. I realized then I had to get better myself which has helped me have more pain-free days. When my pain began to decrease, I noticed my husband complaining of symptoms, all along he kept helping me. I immediately began looking for ways to help alleviate his pain. I asked how I could help him? When I became the caretaker, I realized how much my chronic pain affects my entire family. I also formed a new appreciation for my husband and all that he does for me.
I can count on one hand how many times I have cared for my husband’s pain and illness. It is impossible to count how many times he has cared for my pain. The things I did for one or two days are the things he does every day. He never questions my pain, nor does he deny it. He makes sure I have all the things I need to make it through an attack. As a man, and husband he always says I want to just fix your illness, frankly I admit I would like it to but realistically that will never happen. From hugs to medication and everything in between. Sometimes with all that I put my Husband and family through I wonder if they still love me. Have you ever asked yourself that? With my family’s love and understanding, I do not know if I would make it through the attacks. I needed my pain to subside to be able to see anything but myself. I was stuck in a negative mindset and I could not see a way out of the pain, anxiety, and the fear I felt. I am grateful for the pain-free days that allowed me to experience my disease from another point of view.
For so many years I assumed the pain only affected my physical and mental state. I can now see that being a caretaker is taxing and has mental implications of its own. This new view of my family has filled my heart with love and my mind with positivity. Knowing that I am not suffering from pain alone has allowed me to have compassion and appreciation for my family. Changing my mindset about my pain and acknowledging the support I have has lifted my spirits tremendously. My family has now become part of my treatment plan, their love and support are needed to help me through the hard days. Taking care of my husband, my mother and even my sister in many ways we all have to put forth the effort, time, and above all else is LOVE & Compassion.
