I feel stronger and the gratitude I have for this is immeasurable.
I am getting better about reading my body and learning my new limitations. My limitations are for my body, not my spirit.
I need to rest several times throughout the day to be able to keep going. Once I get dressed, I rest. After working for a few hours, I rest. After I go to the store, I rest. When dinner is finished, I rest. Rest is my fuel and a complete necessity. When I don’t rest, I become weaker and weaker, extremely irritable, dizzy, and a little confused. Laying down for 15 to 30 minutes is like medicine for me. When I remember this, I can achieve so much.
I am more comfortable going out into the world and being communicative as to my needs; especially as people cannot tell that I’m ill by looking at me. This is not easy. I don’t want to inconvenience anyone or be judged for parking in a handicap spot or using a motorized cart at the store… but that’s not my reality. People cannot see my inability to regulate my blood pressure, heart rate, and body temperature. My dizziness and blurred vision are not always evident to others. They don’t realize that the longer I’m upright, the more nauseous and disoriented I become. They see a seemingly healthy woman using services for people with disabilities. I understand the judgements that go along with this and am working hard to do what is best for me no matter what and to give grace to those who judge me. The blessing of this? I find my comfort in God, not in man.
I have more good days than bad days. The bad days always surprise me and take my breath away for a bit. The thought that usually comes to my mind is, “NO! I thought I was past this!” But this is a life-long journey for me and then, I always, always catch my breath again.
Looking around at the women I knew and saw – it seemed that aging took a stronger hold after 40. Bodies, faces, hair… I began to think that 40 was the magical age when I’d become “old.” 27 days after turning 40, I became so unbelievably sick. Life as I knew it… stopped. Dysautonomia is…
In this new season of life, coffee and wine have been moved to the do not consume list. While I’m okay with that, I still miss the idea of what they represented for me: company, friends, comfort, warmth… I think that’s why I’ve been reluctant to tuck away the coffee pot and wine rack. John…
I’ve adored this fern for years. I’ve protected it from deer, replanted it as it grew, and sat in its shade as it hung from the porch eave. Caring for it every morning was part of how I calmed myself. This winter, I was too sick to care for it during the freeze and it…
Five years ago, my life changed. Two of the people I loved the most passed away. My grandfather who helped raise me and my cousin who was only 39. She had five-month-old twins. Trajedy like that brings clarity. I could see what really mattered and what I needed to change in my life. I was…
Finding one good thing can make the world right again. Today, my good thing is very simple—cream of wheat. My stomach has been sick and my food choices, limited. It’s been comforting to find one warm, soothing thing that I can eat. Would you believe that it’s become my equivalent for coffee and dessert? I’m…
I’ve been feeling a little down lately. I think that’s normal. The world is coming alive again and it emphasizes some of my limitations. I cherish the days when I’m healthy enough to walk through the creek behind our little house. There are so many spots to stop and rest. Usually when I slow down,…
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As a people, we are not who we were pre-COVID-19. I am not who I was pre-dysautonomia diagnosis. I don’t think we would have gone through all of this to remain as we were. As we are re-emerging into new lives and routines, I think it’s worth reevaluating what living should look like. This has…
With the world reopening and me feeling better, our schedules are getting busier again. My new limitations make things confusing to navigate. I want to say yes to taking my children to practices and birthday parties, to visiting with friends and family—but the reality is settling in that I run on a day-to-day basis and…
I have a need to talk about what I’m living and learning right now, a calling maybe. I don’t think living with illness means you dwell in a corner and say that everything is great. I think there can be a helpful honestly here that binds us. I’m often told to be careful with what…
I’m going to be honest about the hard and good stuff… the inklings of fear that creep into our minds; the thoughts we’d rather not have; the allowing of sadness and thanksgiving in the same moment. When I get to leave the house, I’m so excited. Thus far, my outings have mostly been to church,…
With so many recent health fluctuations, I thought I’d share a little about what my daily life looks like right now. The beautiful news is that I’m fairly independent, driving, cooking, cleaning, working, parenting… Am I still sick? Yes, but I’m managing it well. I go slower, but I’m going. I attend less things, but…
This is the first spring for our little garden house. It was a dream five years in the making. John worked so hard to design and build it. I researched plants and could see everything in my mind’s eye. Yet, in December, I started to feel unwell and grew sicker for the next few months.…
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