MS and Motherhood, Three Months In

I live with multiple sclerosis, I live with daily fatigue, pain, some numbness/tingling and pretty regular nausea.

When I was pregnant my symptoms never went away, they just changed. They felt more manageable. They felt more productive in that I knew there was a “reward” at the end; I would finally have my baby.

It’s often the case that symptoms quiet down during pregnancy and potentially while breast feeding, and that there is risk of relapse, or flare up, once the baby arrives. I wouldn’t say my MS was “quiet” in pregnancy, just different. In fact, I think I had a flare up but it was so minimal I did not do anything to treat it, and it went away days after receiving my new medication. (This flare up consisted of my right pointer finger going numb-relatively minor in the scheme of things.)

Anyway…what I am getting at is the fear and the realization of returning to baseline, this time as a mom (which is weird to say because I don’t quite feel like a mom yet-whatever that’s supposed to feel like). My son is now three months old and as a family we’re settling into to an expected lack of routine and the chaos of infancy. Now, keep in mind myself and my disease thrive on routine, rest and the illusion of self-care so it has been pretty challenging existing with no plan or structure each day, hour and minute. However, I notice that as time goes on I feel somewhat human, and somewhat sane depending on the moment. I also notice, that as time goes on, my daily symptoms are returning.

Fatigue? Oh, it must be exhaustion from no sleep. Nausea? Well, you’re not eating right for breast feeding, or you’re probably dehydrated. Pain? You’re carrying around a 13 pound human all day.

These are all of the things I’ve told myself up until recently when I sat down and fully allowed myself to remember who I am and how poorly my body operates at its baseline.

Fatigue? This is different than dragging, fully exacerbated by no sleep. Nausea? No matter what I eat, breast feeding or not, I will likely feel sick despite having to eliminate my trigger foods. Pain? Carrying a 13 pound and growing human increases the pre-existing nerve pain I already have.

So, while I try to rationalize and pretend all my symptoms away, I really can’t. As a mother with chronic illness, I really cannot deny the challenges it brings, or the fear for the future that exists simultaneously.

I spent years and years existing in my body and existing in my disease(s). Now, I have chosen to start that journey all over again and I am only three months in. So as I mentioned earlier, the things that helped for years are not attainable at this time…at least not with consistent regularity. What is routine and structure? What is self-care?

Nowadays routine is some complicated equation leading me to determined the most efficient ways to complete tasks while baby sleeps. And structure is catching a yawn in just the right time to capitalize on nap time, or listen closely for the initial “wah” indicating hunger is on the horizon. And self-care? Maybe dinner that wasn’t prepped in the microwave, or a fancy coffee when I’m back and forth between appointments.

But really, those lattes are top notch self-care nowadays.

I am working to readjust my mindset and my self talk when it comes to MS and fears and anxieties and I’m working hard to allow myself to feel and live in the shit knowing that likely the next morning, or the next hour, will feel completely different. And knowing my son doesn’t know or recognize when I’m struggling because he is truly in each moment. And each moment with him -present and attentive and smiley and wiggly- helps me forget for that time and helps me to truly capitalize on his joy and his growth and be fully available regardless of my disease.