The past few months have been a struggle. Between the weird Massachusetts winter weather, stress at work, hormonal issues, a triple-demic, and the holidays, it has been A LOT.
I had COVID at the end of September for the second time. The typical respiratory concerns are not the main reason why it’s so bad for someone with MS to catch COVID. The biggest concerns are the inflammation and the neurological effects associated with the virus. Studies have shown that a COVID-19 diagnosis can cause an exacerbation of MS symptoms, and unfortunately, that is what happened to me. In October, I started to experience an increase in neurological symptoms, like dizziness and fatigue. One night, it hit me so hard out of nowhere that I seriously considered the possibility that I was drugged, even though there was a 0% chance that could have happened at that time. Sometimes with my symptoms, I try to blame them on things that aren’t MS. I like to pretend that my body is normal, because it makes it much less scary than accepting the fact that it is not, and that my MS symptoms can get worse at any moment.
A few weeks later, my whole right side went numb. I was sitting in Starbucks with a student and a coworker and out of nowhere I couldn’t feel my right leg. It’s a complicated sensation to describe. It didn’t feel like it disappeared and it wasn’t tingling, but it felt like there was no blood flow, but there was. This example might not be a universal experience, so it may not help to describe it- but it’s similar to when you tie something too tight around one of your fingers and the top of your finger goes numb. It felt just like that. Like someone had tied a tourniquet around my upper thigh. I could still walk and move it, it just felt numb. Later that afternoon, the feeling crept up and was from my shoulder down. I asked a coworker to feel my hand because to me, it felt like it was freezing because of the numbness, but it wasn’t cold to the touch. Then a few hours later, everything went back to normal. It came and went for a few weeks, but never stuck around for longer than a few hours at a time. Thankfully my brain MRI was stable, but I still havent had the guts to schedule my spinal MRI, which would probably be more telling. I’ll do that eventually. Thankfully my neurologist is fairly confident this is an exacerbation and not a full relapse, which is reassuring. Exacerbations of symptoms suck, but it does not mean the disease is progressing. A relapse means more damage is being done.
With my heat intolerance, the winter sucks almost as much as the summer. It’s cold outside so I layer up, then as soon as I get inside, I overheat. I can’t manage my temperature whether I’m cold or hot, so the constant change leaves my body confused and unable to adjust. It’s exhausting. The weather we’ve had this winter is probably ideal for most people. A few cold days with mostly mild temperatures. Those random warm days are the worst. Everywhere has heat on. If I were to get too hot inside, I dont have the option of going outside to cool off, because it’s warm out there, too. It sucks. I constantly layer because in the course of a few hours, I could need a heavy sweater or a t-shirt, I always need to be prepared. So if you happen to see me wearing short sleeves while everyone else is wearing sweaters, this is why.
Then there’s my other chronic illness that is constantly on the back burner since my MS diagnosis- endometriosis. It was well managed for a while, so I had the brilliant idea to go off of hormonal birth control back in March. I may or may not have been heavily influenced by the health tik tokers saying that hormonal birth control is the root of all evil. I’m on so many medications and I always want to be on fewer, so I thought I’d give it a try. That was a big mistake. After a few months my endometriosis symptoms flared up, so I had to go back on. The hormonal roller coaster I have put my body on this year has not been pleasant. Since going back on in September I have had more migraines, bloating, stomach aches, cramping, mood swings. So throw all that onto already flaring MS symptoms and you get the absolute hell I have been putting my body through for the last several months.
My body doesn’t feel like mine, and I have had little control over how I feel every day. I try to keep positive, but it’s so frustrating. I do my best to enjoy myself when I can. I assume that to everyone else, I look like I’m living a normal life. But those close to me know that in order to go out and have a good time, I have to rest. I have to plan my days in two halves. One half for rest, the other for fun. Sometimes I’ll push, and I will go to a Bruins game or out to dinner during the work week, but I always pay for it in the long run. If I have plans on a Saturday night, I need to spend the other half of the day resting. If I want to go to brunch, better make sure I can spend the rest of the evening on the couch or in bed. It sucks. This winter has been full of mid-week slumps that leave me unable to get out of bed. If I catch a cold, it’s even harder for my body to push through. The sniffles can feel like the flu. I’m missing more work than usual, which in the end just stresses me out more.It’s a cycle I can’t seem to get myself out of.
But life goes on. And as always, I remind myself that things could be worse. I am grateful for the times I feel good. I am grateful for my people who never make me feel like a burden. I am hopeful that a new year will bring new energy. I am focused on taking the best care of myself that I possibly can. Living with chronic illness is a balancing act, and recently the scales have been tipped out of my favor. I’m writing this in the hopes that it manifests change and that there are better days ahead.