For years, I’ve known something was wrong. Tests were normal. Doctors would point to anxiety and a vitamin deficiency and I’d be on my way. I’d tell John, “When I get to the other side, I’m going to ask God what this was. I have something they can’t figure out.”
Two days after Christmas in 2020, my first major flare-up hit. I went from walking/jogging two miles a day to being completely wiped from packing school lunches and sitting on the floor in my house to rest while walking from room to room. I’m usually fine when I lay down or sit down, but weak and dizzy when I stand or walk. My heart has a beat all its own and my blood pressure is playing a game of “how low can I go.” My body temperature does not regulate well so I’m either swaddled in a heating pad or throwing extra layers on the floor because I can no longer sweat. My anxiety can be my biggest prison. I have good hours and bad hours. Moments where I can walk to the car freely at a good pace, and moments where I cry to John asking, “Is this the point where my life changes and I’m not okay anymore?” Because my arms are too weak to lift wet towels from the dryer and I can’t stand long enough to make dinner so I’ve placed resting stools next to the stove and sink. This has evolved to where I need a cane and sometimes a wheelchair.
This flare-up provided the opportunity for a diagnosis, the comfort of knowing what’s causing this, and connecting with a community who also has this ailment. I have POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia. Basically, my automatic nervous system is not working correctly. Example, when you stand up, your blood vessels automatically contract to keep your blood from pooling in your feet. Mine don’t do that, so my blood pools in my lower extremities. This means that a lot of my body is not getting the blood and oxygen it needs so my heart works extra hard to compensate for this and I become very weak. Another layer to this, I have Hyperadrenergic POTS (Hyper POTS). A form that is usually genetic, comes on slower, and is harder to treat. Some people with dysautonomia are bedridden, some live “normal” lives.
Here’s a video that explains my dysautonomia –
There’s no cure for dysautonomia so they focus on identifying a cause and treating symptoms. We hope this is a flare-up, so at some point it may dwindle and I may regain a lot of what I could do before. I don’t know how long this flare-up will last or how many more are in my future. For treatment, doctors are exploring a combination of medications, diet changes, salt and hydration to increase blood volume, and physical therapy to push me and strengthen my legs.
- Usually (but not always), when I lay down or sit down, I function like a totally normal human being. It’s like I have multiple personalities and my healthy persona resurrects in relaxed positions which is an amazing respite.
- I am blessed to work from home and have a job where I can sit all day. What’s more, working is an amazing outlet where I feel normal and useful.
- I have brilliant doctors with good souls who care for me and love me through this.
- I have an AMAZING husband who has taken over the household chores, holds my hand when I’m so frustrated by what I can’t do, and loves me independently of what I can do to make his life easier (because I’m not helping in this arena right now.) Our marriage is like every other, good seasons and tough ones. This current challenge has strengthened our relationship with kindness and humility. Words can’t express how lovely is his soul.
- On days where I can’t do much physically, I can do a ton spiritually. I have a prayer list and I pray for you. Coincidentally, I just joined a healing prayer study through my church. The timing couldn’t be better.
- My children are learning to do more around the house and be more independent, selfless, and compassionate. I’m VERY proud of them! But to be honest, parenting while being weak and stationary is hard. I’m figuring this out.
- My three best friends, mom, sister, aunts, and cousins are all in the medical field. So, I have the best call-a-nurse/doctor line possible. And they are so much more than that. They are my sanity and some of my greatest loves.
- Most importantly, this draws me closer to God. If you know me, you know that I “might” be a perfectionist who likes things to run at optimal performance. Well, I can’t physically make that happen right now. I have zero control- but God has total control. I trust in Him and His plan. If this was all to remind me that God should be the priority in my life, it was worth it.
I want you to know:
I had to think hard as to whether I’d share any of this and have a lot of reservations and even fears about doing so. In the end, I decided what good does it do if I learn from something but don’t share it.
Praise God for what we know and what we don’t. Praise God for love and hope.
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