In February Cambria became ill with a virus that caused a high fever eight consecutive days and an upper body rash. I presumably caught what she had (although thankfully I was spared the rash) and a couple days into being sick dysautonomia flexed its muscles and knocked me down. For at least three weeks (maybe four?) I had almost no tolerance for being upright. It was so awful and I feared I wouldn’t get back to the higher level of functioning I had been previously enjoying. I did, thank God. Two weeks ago I caught a cold. It turned into a sinus infection and instantly I was knocked on my bottom by the beast again. I have spent the past two weeks unable to be on my feet for more than 60 to 90 seconds at a time some days (I can get three to five minutes after I first put on my waist or thigh high 40mmHg compression stockings). As I stand my heart rate skyrockets, my blood pressure plummets and then goes high, the back of my head pounds and the muscles in my neck burn as my brain tries to pull oxygen from the blood in my neck and upper back. I sweat, it drips onto the floor around me, I fight vomitting and have crushing chest pain from the lack of oxygen rich blood in my upper body. I gasp for air like someone with COPD. Sounds fade, mind boggling brain fog ensues, and consiousness ceases unless I lay down and prop up my legs so blood can flow back to my upper body. It takes several mintutes to feel like I am not on death’s doorstep once I lie down and then it takes hours to have any further recovery from… standing… for a couple minutes.
Beyond this there are many more symptoms of the autonomic neuropathy. Nerve pain, swollen joints, digestion issues, the list goes on. This is why I dissapear. There is nothing more to do during these times than to buckle down at home, sleep as much as possible, and constantly remind myself this won’t last forever. My husband is so incredible, he is the father and the mother during these times. He deserves some kind of award.
I started antibiotics Tuesday night and last night I felt the first few blissful moments of this breaking. Today has held longer amounts of time being upright and a much sunnier disposition. Hoping a super restful, low-key weekend will have me back on my feet both figuratively and literally. I am having a sinus surgery revision (I had it done the first time seven years ago) in May and the plan is that will stop the chronic infections and the toll a compromised immune system takes on my failing autonomic nervous system. I can’t live in a bubble, I will still get sick sometimes, but I am learning this year how truly important it is to do what is reasonable to avoid illness. My beloved doctor at Case Western (who no longer practices, sniff) warned me how crucial staying healthy was, now I know that more than ever and hopefully we are on the path to getting there!
I wrote this as kind of a “day in the life” type of thing so 1) fellow potsies that read my posts can know they are not alone in their suffering and 2) to just raise general awareness as to how this syndrome effects people. This is a broad spectrum syndrome so although there are hallmark symptoms most dysautonomia patients share, this disease effects the total body and it plays out very differently between different patients.
Next I hope to write a little about how I cope and tips and tricks for dealing with this as a mother of two very young children. To other dysautonomia patients, you are not alone, keep fighting for your health! God bless!