These blog posts are going to be about my journey with MS.
Right before Christmas, in my haze of COVID, I decided that enough was enough. It was time to take back my body and fight to regain my mobility! I had another Ah Ha Moment so to speak.
I got COVID in the second week of December. I have MS so I am immunocompromised. Sometimes if you are sick and you just look at me, I get whatever it is that you have. With three kids...this can be challenging. But I manage ok. But when I got COVID, it was a doozy. My body hurt, I couldn't walk very well, I was so fatigued that I slept for two days straight. My head was foggy. I was weak...so weak. And it lasted for 6 days. Even after Paxlovid. Well, the positive tests lasted for 6 days. I struggle with most of these symptoms still today.
So now it's the worry, is it an MS progression? or is it just residual COVID? Will it get better?
My body has been on a steady decline for about a year and a half now. My left leg drags. There is weakness and drop foot and dare I say, atrophy. It makes me crazy. I used to dance....that is not even a glimmer of a possibility right now. I am a fitness trainer..but strangely when I lift, my body feels normal. I can't do quick movements side to side but other than that, I feel strong. If I'm standing in one place and lifting...I don't notice it at all. For 45 minutes a day, 4 days a week, I don't have MS.
But since COVID, my symptoms have gotten worse and now include dizziness (which leads to nausea)...I feel like I'm drunk and the city is moving like it's in a glass bottle filled with water. I am also so tired. So tired. If I walk the half mile to pick up the kids from school, I am cashed out. It is absolutely frustrating. And poor Jude...my middle son. He is at the perfect height right now so that if I feel like I might fall, and towards the end of the walk home i'm at my worst, I grab onto his shoulder or neck (his choice) to keep myself steady. He asked the other day..."How long have you been like this?"
I also have spasticity of the legs. My doctor calls it restless legs but that is defined by your legs FEELING like they need to move so you move them. My legs jump and kick and contract ON THEIR OWN. It's painful. I can feel the energy start to buzz at the bottoms of my feet before it happens. That gives me the cue to start pacing the floor. It doesn't stop it, but it feels less intense if my legs are moving. And I can't even think about sleeping until it stops. So I am up until the wee hours of the morning sometimes just pleading with my legs to stop jumping and contracting so that we can sleep. It works sometimes...
Even as I sit here now my eyes are drooping and even keeping my head up feels like holding a 30 pound weight on my neck. But a nap won't help. This kind of fatigue isn't solved by sleeping. It's just a heavy, wet cloud that surrounds you and won't let the sunshine reach you when you wake up. You just continue with the cloud around you and you make decisions regardless. Am I tired? NO I AM NOT (I just need more coffee 😁) Are you going to get done what you need to get done? YES I AM. Will you smile today and pretend everything is ok for the people around you? YES I WILL. It's important. I'm a mom.
So the question remains...Is is Long COVID? Or is it MS?
Here is what my recent ER doc explained....'You have had a traumatic event to your body. A stressor that most people can rebound from but people with MS...it's a different story. Stress is the worst for your symptoms. You can't really alienate which is which at this point because they are probably both true. You just have to think, is it worth adding another stressor trying to figure it out? Or do we just ride out the storm and see...?'
Things that make you go 'hmmmmm'
Either way, I'm still kicking...Still training...Still kicking butt where butts need to be kicked.
And there is more to this journey. A drastic action being taken.
Ah Ha Moment Fitness