I had a wonderful evening, spending time with family while overlooking the South African ocean. Tuning into life, instead of my MS and symptoms helps them feel less present and less pervasive. The problem with MS is symptoms are new or in flux. They don’t always feel the same. For me I have a baseline numbness that blends into the background. If something feels the same your attention isn’t always brought to it. It’s not normal, but it becomes the new normal. You can forget about it and go about your day.
However this same baseline numbness isn’t a steady sensation. It is constantly in flux. Picture the beginning of a musical arrangement. The notes are steady, a baseline rhythm, the strum of violins producing a steady rhythm. That’s not how it stays- add in some notes, here’s an oboe, a basson, a viola, drums, cello, trumpets, trombone, there’s a tuba. Constant flux. So here’s that baseline hum of numbness, add in some extra tingling, pin pricking sensations, now some spasticity- that’s muscle tension, a flexing sensation that doesn’t release. Now, that sensation takes on a crescendo- it increases and moves up the legs and arms. Now there’s a vibrating sensation, like your phone on vibrate in your pocket but it is on your big toe. Buzz, buzzz… buzz..bz…..bzzzzzzzzxxZZZzz!$&@
This isn’t new; it has all happened before, but maybe it’s been a few days, maybe a week. So there is a newness to it and the mind is drawn to it. It interrupts your day. It interrupts your normal routine. If there is nothing to take your mind off it, your mind naturally goes to it, and it intensifies. Even as I write this blog post I am starting to feel all those sensations. Guess my mind wants to make sure I give a proper description. These weird sensations are the new normal for me now. Now the numbness is in my jaw, coming around my eyes. It increases and spreads. If I pay attention I can even feel it in my shoulders.
This is just one symptom that I’m describing. Add in bladder problems, MS Hug, cognitive problems, falls…. the list goes on. Writing this makes me wonder how do I ever get anything done? How do I ever accomplish a single thing? How do I be a mom to my kids? How am I writing this?
I have found if I can trick my brain and take it away from these symptoms- pay attention to other things and not the weirdness that is going on in my body, I can function. However, if I let them take over. If I give my MS all my attention and fixation- they get worse, they increase, and functioning is nearly impossible.
Some of my body is malfuctioning. Some of my nerve signals are messed up. Some of the places in my brain and spinal cord are scarred and the signals don’t travel through the way they should. But there are other places that are healthy. There lots of regions that aren’t scared. They can take over and do the work. They can help me function.
When I was 22 I had a big relapse that affected my gait. I awoke walking like a drunk person, holding on to the walls, just to get to the bathroom. One week later my back buckled forward, while doing a qigong exercise and the spasms took off from there. I had those intermittent spasms for the next five or six years. These spasms often happened when I was in bed, when I was trying to sleep, when I was stressed, or even when I was trying to meditate. They didn’t often happen when I was being active, but when my body was at rest. However, overdoing it would bring on the spasms, because I would be unable to walk or keep going and I would have to lay down, then spasm. Concentrating on the spasms always made them worse. But it was almost impossible not to concentrate on them because they were violent. My whole back would buckle, they were convulsive, they were seizure like, but I was aware and awake. Once I had them in bed at my Grandma’s house and they were awful. It was hard to call out for help when they happened, both because I didn’t want my family to see me going through that, and I couldn’t initiate speech (another Ms symptom.) This time I don’t know if I was able to call out or my Grandmother happened upon me, but I remember my uncle coming in and asking if I wanted to be taken to the hospital. I agreed because the spasms scared me so very badly and I just wanted it to stop. Sitting in the waiting room of the ER, we waited and waited. I was sitting in one of those wheelchairs that had a soft back and soft seat, where you kinda hang in it- with your legs up on the leg supports. Those wheelchairs are so gosh dang uncomfortable. I was having mild, repetitive spasms. My wonderful cousin Rebecca, we call her Sissy, started massaging my shoulders. The spasms eased and after a few minutes of massage from my wonderful cousin’s hands- they went away completely. I asked if we could just go home, because I didn’t really want to be in the ER and I didn’t really believe that there was anything more that could be done for me there, than what Sissy had already done for me. Massage and human connection brought me out of those painful spasms. I had an answer.
It is a difficult balance to keep. There is a fear of taking on new things. There is a fear of not being able to handle them. But to take on new things is what helps our brains grow and establish new connections. This is a disease of stagnation and worsening, or at least that is how it was previously marketed. Like any bully- we have to not give it our attention. We need our other occupations to keep us sane. But we also need our connections with each other. This post may make it to the eyes of someone else experiencing horrible spasms. You can reach me here, on Instagram, or Twitter, if you want to talk about it. One of my goals on this blog is to share a timeline of my symptoms- what I did, what worked. We are all different, with different brands of MS. But a commonality of shared experiences help us move forward.
The way this disease is being marketed, through digital marketing and social media has changed. This is a major victory for us the patients and it is a major victory for the pharmaceutical companies because they are finally interested in listening, while they search for medications to help us cope and heal. We are changing the conversation, we are showing our capabilities. Keep persisting! Never give up! Your life is too important! 🧡