Yesterday I said to my sister in law something about taking the wins where you can.

And so I will. I’ll take the MS wins because while there are awful, awful, horrible and scary things about this disease, I can find the wins.

Recently, I had the most notable flare up I have had in ten years. I needed steroids, I needed support. I lost vision to an extent and I had a hard time walking. Awful, awful, horrible and scary. Yes.

But there, in those weeks I was reminded of why I created the structure and the routine (as much as possible) for how I live my life. The way I eat, the attempts at movement, the protection of my sleep needs and my goal of peace; and everything that comes along with all of that. All of those things help me stay flare up free. My routine helps me to see, literally, to see the world in front of me, and to see my son’s tiny face.

So, with this reminder I tried to slow down, I took inventory and saw where I was failing myself. Granted, the last four months in my life have been insanity and chaos, most of which was out of my control; but, I did not listen to my body, did not slow down, and did not hold a care for my own wellbeing, unintentionally. So, I hit reset.

Resetting is hard when freezer meals, chaos and anger feel so much easier, so much more accessible. However, resetting is so necessary for my sanity, for my physical health and for my family’s wellbeing as well.

With this reset I was dreading my follow up with the opthaneurologist. I did not want another appointment reminding me I have an awful, awful, horrible, scary disease. I did not want to interfere with my schedule, I did not want to drive there and I certainly did not want to wait for ever to be seen, let alone have multiple exhausting tests. But I did. I did it.

And I’m glad I did.

My vision returned to my baseline (a blind spot covering 25% of the vision in my right eye). My color vision is not where it was, but I will take that any day if it means I can see again.

What a win.

To learn and to see (heh) that I, that my body, was able to heal itself because I paused, listened and reset. I also took disgusting meds and did what the doctor said despite really, really struggling to do so.

What a win.

To drive home in tears, because I got good news instead of pulling over sobbing because my body is failing.

What a win.

To go home, to look at my one year old and to see his face. To see all of his face in one glance.

What a win.

To walk up the stairs without wincing, to get on the bike without holding my legs, to get out of my chair without having to think twice.

All wins.

With this awful, awful, horrible, scary disease I am going to take every single win and hold on to them for dear life.

Because it is my dear life.

It failed me.

It failed me big time.

I lost another unborn babe. If you’re able to keep up that makes three now. Not consecutively, but THREE nonetheless.

This time feels different. It feels different because I had zero bleeding, everything appeared fine, we even had two promising ultrasounds. And then I faintly heard “no cardiac activity” as I stared at the black and white image of a tiny, tiny lifeless baby inside me. Still inside of me. Still.

My husband explained it as a gut punch, I describe it as a soul punch; the icing on top of the worst flavored cake I’ve ever eaten.

I’m sad, we’re sad. We’re heartbroken, but now have to carry on with our little 9 month munchkin who has zero idea of the hurt we’re feeling. Zero idea of what he is missing. We will try to give him a sibling, we will try to create the busy, full home we so badly desire, but he-we-will never get to know this little one.

This one that was a baby, not a tumor. This one that was our happy surprise, our early goal.

We shared our news, good and bad, with many close and we’ve grieved with those we love. I say this to say-I want to talk about it. It needs talking about.

This is not a stigma, this is not taboo, this is real life, real loss.

This is vulnerability by definition and this is heartbreak through and through.

Today I said goodbye to that little life and I felt it slip away, alone, in a cold and bright room. But, because of our sharing and our openness I came home surrounded by the most love I’ve felt in a long time. The most love from blood family and from chosen family.

In the midst of chaos (that seems to never end) and in the midst of again, some of the darkest days, I am reminded of the special world Mike and I have nourished, and the amazing humans we are so honored to have surround us.

Words are not enough for the grief AND gratitude that absolutely fills my home, and my heart.

I’ve tried to write a post for a while now. One about a flare up as a mom. One about appointments as a mom. One about existence as a mom. One about…anything as a mom. And I haven’t been able to. As a mom, I’ve been too tired.

But, now as I sit in yet another waiting room I have the time and the emotion regulation enough to do so. (Especially since I’ve been in this waiting room for hours before). This is the waiting room of the neuro-ophthalmologist.

Anyway…

Before having a kid I lived in the mindset of ‘I will take each ms, and health, challenge as it comes.’ And then I hit a wall; in august my vision went wonky. And I say wonky because I have no other way to describe it. It took time for my eyes to adjust to light and dark, I thought I was having some blind spots that were new, I was having trouble focusing, etc, but no one thing to pin point when doctors asked me to explain what was happening. Because I couldn’t be seen by a specialist, I got an emergent MRI and received a three day dose of IV steroids.

Fast forward to now, 3.5 months later and I am finally being seen, well waiting to be seen. Waiting to learn the extent, if any, of the new damage to my eyes. I am, at minimum, having a typical eye exam, and a color vision exam, followed by a field of vision test and a scan of my optic nerves. All testing that I have not done since I originally lost my vision in 2008.

My mind immediately goes back to that fear of the unknown; the fear of not yet being diagnosed and having zero idea of what my future would even hold.

This time I am fearful but, for so many other reasons.

For fifteen years I have remained fairly stable in my disease progression and have always said, I can handle losing most abilities, but should I lose my sight I would not manage that well. And while I can still see, the fear of one day not being able to see my children clearly is crippling. And while I often write of the positive moments, and lessons learned from my MS, when it comes to this I have no wisdom, no insights and no cliche motivational quotes to preach.

I have only this…

It sucks. Even when it’s good, it sucks. Even when I’m hopeful and inspired and at my optimum performance, it sucks.

It sucks living with an unpredictable, often debilitating disease. It sucks raising a child when having this disease. It sucks navigating an able bodied world in a body that could very well become disabled at any moment.

The fear never, ever leaves. The constant reminders of how quickly anything could change are always present.

Today, in a presentation someone asked what filled my cup, and I wrote down my son; but, that answer means so much more to me. The full answer is-seeing my son, watching him smile and laugh and truly seeing the world through his eyes.

I hope I can always see his world.

Having a chronic illness as a mama is a new kind of concern.

Each sleepless night brings about a fear of what will happen next. What symptom will pop up? What new flare will ensue? What struggle will I face today?

On the 80th trip up and down the stairs( or the 900th bounce and the one millionth time picking him up out of the jumper) I think to myself – how will this exertion impact my already achy legs or my numb upper back.

Oh and then to have to also parent. And parent well; because my son did not sign up for this. He did not willingly put himself on the path of challenge because his mama has some medical stuff.

So far, I have noticed the phenomenon that in the exact moment I see his smile or hold his little body, my own body snaps into gear and can handle anything. Then, once he is safe in bed for the night my own body loses control and crashes. Every symptom I’ve been fighting and every thought I’ve been hiding comes to the forefront.

And so does the fear.

I worry that the five hours of sleep I get a night are nowhere near enough to heal and mend these things. Those limited, often restless moments are minimal compared to what is needed for chronic illness.

And that fear that my symptoms won’t heal, or won’t quiet down never turns off.

Leading to a vicious, vicious cycle. One consisting solely on the reposition of lack of sleep, stress, chaos.

So, how do I wrap this thought up in a pretty bow and end it? I don’t think I can. I don’t think there’s a resolution to the pervasive fears of motherhood. There are distractions, and moment to moment coping. I am learning that to chronically mother is to chronically accept.

While motherhood with chronic illness brings new concerns, new stressors and new fear-it also brings new levels of acceptance, presence and hope.

While I live in the drama and insanity of illness, I actively work towards and choose (as often as possible) to also live in the beauty and motivation of each new moment; smile from this sweet boy, and each new learned skill in the hopes to hang on to those memories forever, even when the fear feels all encompassing and the sleepless nights are truly never ending.

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.

A lesson I worked for years and years and years to learn in my chronic illness was this:

Rest when i need it, listen to my body and choose what makes sense in each moment. Essentially, conserve my spoons.

A lesson I need to learn in motherhood: Rest when i need it, listen to my body and choose what makes sense in each moment.

The same lesson in a different way. I was chronically tired and I am chronically tired. Exhausted even. So, there poses a challenge during new motherhood.

I was diagnosed with MS almost fifteen years ago and fatigue was, and remains, one of my bigger, most debilitating symptoms. It took me until I was about 27 ish to finally accept that, listen to it and honor it within my body. And it’s taken me two ish months to realize I need to adjust that mindset as a mama.

I used to use my yoga practice as a perfect example of listening and resting when needed along with working and movement when needed. I would exist and go to yoga as often as possible, even when that meant child’s pose for 70 minutes, and savasana for ten. I would work and socialize and purely exist in ways that made sense and reflected where my body and my mind was at in each moment. And that was a skill I had honed in on, and a skill I took pride in.

Now, I lack that skill once more. I feel embarrassed that I have not been, now and during my pregnancy, living in that way. And as I lay here during my son’s nap time, I realize that I have not been living in a way that shows my body and mind the respect I once did.

I have no answers for myself or for others, when it comes to making the necessary changes to return to that way of existing. And I believe that is because my son is only ten weeks old and order, routine and planning are completely out the window for the time being. Though I do truly think the issue cannot be corrected without having that awareness be present.

So, here then is part one of my lesson: just notice what feels uncomfortable and what needs modification. I know it will not always feel this way, and I know I have a layered experience when factoring in my illnesses and ailments. But that doesn’t mean I can’t start considering how to feel better now, and each moment following.

My discomfort now lies in allowing myself to take rest time and to do all of the things only when I feel fully capable and moderately present enough.

I will try to start accepting where I am, advocating for what I need and proving to myself I am and will be ok even if I don’t feel it moment to moment.

(Now, let’s see if I keep this mindset between now and next mental break down)

It is 5 am and my baby is finally sleeping longer stretches at night. However, I am wide awake now.

I hear the sweet bird songs and the start of morning traffic outside my window as I wait not so patiently for him to wake up. My body hasn’t adjusted to these later wake ups and I cannot fall back to sleep due to the discomfort of waiting to feed. Do I pump? That seems silly, since he likely will wake within the hour.

I love these sleepy, dark moments in the early morning and am glad they’re feeling more peaceful. I’m grateful for more contented wake windows with my little guy and glad to finally start playing and experiencing some quiet in this chaotic home.

The newborn stage is hard, it rocks your world and creates a visceral response – it puts you in a constant state of survival.

I, so far, feel it has been a challenge in having built connection with my tiny man. I’ve been head over heels in love with him since moment one, however, I felt we did not get to share in the joyful parts of the newborn stage. He was struggling to exist in this scary world; and I was having a hard time supporting his larger than life needs.

We’ve since learned, made adjustments and were able to collaborate as mother and baby do.

I captured so much of the cute, snuggly, sleepy moments on camera. And I also stored photos of the crying, the screaming, the sleepy smiles of mom and dad. Though hard, I want to always remember our first experiences together. I want to share with him what it was like and how we worked together to learn and make it through.

I want to tell him about this moment. Now.

Me at 5 am, leaking through my shirt. This moment with me looking through all the pictures I took of him yesterday. Right now, listening to his sleep snorts and grumbles. Now, where I am laying awake impatiently waiting for him to wake up so we can listen to the birds together and see the first light of the day, ready find new things to explore together as mommy and baby.

I’ve not been a mother for too long, a short two months, though the desire was there for quite some time. I felt my world change and the mothering kick in though on July 15, 2022 when I saw that positive test. 

I recognize the challenge that is pregnancy and the chaos that is the newborn stage. I, however, added another layer. Chronic and invisible illnesses. Multiple sclerosis. Post orthostatic tachycardia syndrome (POTS). Depression. Anxiety. And a host of other smaller, less diagnosable things. 

A little background regarding my treatments prior to and during pregnancy:

When I got pregnant I stopped my MS medication. While it was safe to be in, I needed a break. It was an injection three times per week that caused me so much pain and honestly a lot of stress. Stress I just did not want to go through while carrying my precious cargo. I communicated with my neurologist and my OB and we all agreed it was safe and made sense. I had been on meds since my diagnosis and was stable enough in my disease that we all felt comfortable coming up with a plan for me to resume meds immediately following birth. I was at peace with this. 

As far as PoTS went, I managed it myself with diet, listening to my body and some movements. I had been to countless specialists that never officially diagnosed me- my most recent doctor telling me “we’ll call it dysautonomia, which would be saying you have a car, where as pots is a Toyota.” A previous doctor sharing, “you’re young thin and athletic you can’t have pots.” So, like I said I figured out how to feel good enough on my own. 

Depression and anxiety have been a part of me since middle school. I have been in and off meds but have such awful side effects to each that they were never worth the minimal relief that would come. I’m fact, early on I got into multiple car accidents while on one, and my pupils dilated so much I was unable to see, while on another.  So, again I manage my symptoms and have engaged in therapy on and off throughout the years. 

Anyway, I digress…

So, early pregnancy was a dream, an awful sickness filled dream. I had most of the typical symptoms that come along with the first trimester-and each of those symptoms were welcome because they were less intrusive and more manageable than my regular day to day. Plus, there was a reason. 

I was thrilled to be feeling sick, to be utterly exhausted and to be plain downright miserable. I was thrilled because there was a reason, there was a desired outcome and I was closer to achieving one of my goals. I was happy to be unwell for the first time since 2008. 

Early on I also found out I had gallstones and began feeling pain from that, which luckily went away relatively quickly. My ribs began to flare as well, along with some tailbone and sciatica pain. Again, those were managed quickly with the help of my physical therapist and my continued stretching. 

As I said, all of this discomfort was welcome when compared to my daily pre pregnancy misery. 

And then the anxiety crept in. Not an anxiety that I had ever had before. It was an anxiety rooted in previous loss. An anxiety so visceral because it was based in a true situation, based in previous loss. An anxiety inconsolable. 

Each scheduled doctor appointment lessened my anxiety, and each ultrasound increased my joy and my connection to this developing baby bean inside. 

And then I hit trimester two and three. 

I began fainting. I fainted so frequently that at work my coworker began calling it “fainting Friday.” I often felt faint but was always able to catch myself or feel it coming on; this, however, was different. With my second and third fainting spell during pregnancy I went to the hospital for tests and it was determined I was severely anemic. I began an iron supplement which did nothing but lower my iron levels. I was then sent to a hematologist. We determined my iron levels were so low due to my MS. It was acting up in a way that my body was unable to create more blood in my body. I then received an iron infusion. 

Remember how I said I get side effects to meds? I did to the infusion as well and had a minimal allergic reaction. But, it was caught and treated and I started to finally as if I could exist. 

In January my right hand began going numb and tingling. I mentioned this to my OB who said that was normal and it was probably carpal tunnel. They recommended a brace to wear at night. I tried it, it did nothing. I mentioned it to my neurologist and we determined it was likely an ms flare up, despite that being uncommon. I continued to remind myself of the extent to which i have had flare ups in the past and this was relatively minor. 

This flare did trigger concerns for after delivery, but I was so exhausted, so achy and so overwhelmed with my impending motherhood that I couldn’t spend my mental energy focusing on that. 

Speaking of exhaustion. My illness induced insomnia only increased during pregnancy. I did not sleep well, or for a full night since July. I cried most nights, technically mornings, about how exhausted I was, how uncomfortable I was and how insane the dreams were that I was having when I did sleep. 

I slept better in the hospital after a c-section. 

I say all of this to say, my illnesses impacted 

my pregnancy. And my early postpartum (another blog to come on that). And I can only imagine the continued impact they will have on me, on my child’s upbringing and on my future. 

I am curious to navigate relationships, physical and mental health and my own goals in this new uncharted territory. And doing all of this with my chronic, invisible illnesses. 

Fears aside, I am looking forward to learning and growing even more through my disease and through my chronic mothering. 

 

Though my appointments are not as often, or as regular as they used to be, it always seems they come in multiples. This is day three with a third consecutive appointment; all for different, yet related things. 

The appointment anxiety for even just a check up is overwhelming. It’s an unconscious buildup that finally releases in the moments of waiting. 

Waiting for the right time to leave as not to be too early. Waiting in the lobby for my name to be called. Waiting for the doctor to come in, to assess, to plan. Waiting for the bill. Waiting for the follow up report – though just an assessment – the waiting is all encompassing and often unmanageable. 

Each time I believe I’ve navigated, managed and mastered the art of being a chronic illness patient. Each time I notice my breath catching, my chest tightening and my temper shortening. Each time I shut down, I cry and I treat myself to a fancy coffee at the end. (I am not sure I can still consider fancy coffees treats when I get them almost daily)

All the chaos and effort put into appointments, including scheduling, planning, waiting, feels so anticlimactic at the end. Luckily, most of my appointments show best case scenario, or as I said, just checking on stability. However, due to continued expectations, I have created a false narrative in my mind that requires me to prove, validate and confirm my need for appointments and specialists and added care. 

But, if asked I would explain that the appointment anxiety never goes away. The reminders of medical trauma and concern lingers, especially with continued check ups and assessments that are often held in the same places with the same people. My brain does not always get a chance to rest, recharge and reset. But with fancy coffee and as much routine as possible I can ease my racing thoughts (minus the caffeine buzz) and calm my already compromised nervous system. 

Until the next cluster of appointments to come.