Neurological Covid

Covid is a strange disease. I look forward to learning more about it in the future – since that is how science works. I chuckle listening to people who have never had it talk about it as though they know anything. Unless you’ve had it, work in the medical profession with Covid patients in a hospital or office setting, are an epidemiologist, or an infectious disease expert – I can’t imagine what you would possibly have to say beyond conjecture. Or judgement.

In my house we are doubly lucky. We all have had it, and my husband also works in a hospital. His floor is the “Covid floor” and pretty much has been since March. Based on what we have experienced, what he has seen, and conversations with other patients, it is interesting how this disease attacks people very differently. The most “common Covid” is the one spread across the media. This Covid assumes you get a fever. It assumes you have a cough. This Covid assumes you get a respiratory disease. With this Covid, you often don’t survive. This is the Covid we have made rules around. Although this Covid is dangerous in its own right, it is all the other Covid that makes the disease hard to stop, and why it keeps moving so stealthy through our country.

My Covid is heavily neurological in nature. I have mentioned this before. In week 8, I absolutely am still having symptoms. Most people are stunned to hear this. I never once had a fever. I maybe had a dry cough here or there but nothing major. I have some shortness of breath, but the worst of that passed after week three. Therefore, when places take my temperature to “make sure I’m safe to enter” I am glad I am wearing a mask to hide my smirk.

In week 8, the epilepsy medicine seems to be keeping the hideous headaches at bay. The clenching ache at the base of my skull is still there, but has receded to more of a stiffness than excruciating pain. I no longer have shooting daggers through my brain or aches so bad in the side of my head that I’m afraid I’m having a stroke. In week 8, I have been able to cook dinner 2 nights in a row.

The tastes and smells are still crazy. I don’t taste oranges anymore. The horrible perfume smells have morphed into something even weirder. I now feel like I am spending all my time in a “greasy spoon”. Yes, you heard me right, I spend good portions of my day thinking I am smelling breakfast foods on the griddle. I like breakfast food so this is a welcome reprieve. The phantom tastes and smells are really unusual and the one part of Covid that I am most interested to learn the origin.

Neurological Covid destroys you emotionally. You can’t control it. I thought it was me, but I have talked to so many other patients with this same experience. You are literally watching yourself on a rollercoaster of feelings that you cannot get off. It is so hard. I am constantly apologizing to the people around me for weeping over a pretty fall leaf or yelling about a package arriving late. The emotions don’t make sense.

Covid in this form destroys your short term memory. I can still speak a second language and name things from 20 years ago, but don’t ask me what I had for dinner last night. I constantly ask the same questions over and over. I had a conversation with my company owner last week about how to set up supports for this. Thankfully, it seems, I have been hiding it well. I feel easily confused. It is hard to make decisions. One morning I had to make a to do list to even get moving out of my almost catatonic state. The first two items were: Walk the dog. Take a shower.

My mind is my pride and joy. 8 weeks in and I finally can read a book again. I have enough wherewithal to remember the plot, and without the headache the experience is enjoyable. I feel things slowly coming back. I am in contact with a neurologist at Northwestern working specifically with Covid patients. Many have had to learn to walk again. Feed themselves. Speak again.

So much conjecture and so few answers. So much judgement and so little grace.

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