Today’s post is about the answers I came up with when I looked at my life just after my diagnosis up until now. Like with Monday’s post, I will end with some questions to ask about your current situation.
After my diagnosis, I was in not in a healthy emotional place. I grieved the loss of my “old life,” such that it was. I tried to process the physical betrayal I felt, the uncertainty of my future, and why I felt like life just hated me. Despite that, or perhaps to help cope with it, I did self-reflect a little bit about my life and MS.
A thought I kept coming back to was my mortality and what that might look like. While MS is unique to everyone, the only example I had in my life was Annette Funicello. I swore that my health trajectory would take me to a place where I would be trapped in my body like her. I told those close to me that I was convinced my RRMS would progress to SPMS by the time I was forty, just eight years away at the time.
I was in a weird space of fighting the progression of my disease, but also just accepting what was happening. Part of my anger and self-loathing I had at the time led me to just want to give in and let MS kill me. But I also wanted to fight MS and get healthier. Torn between the two extremes I got stuck in a holding pattern for several years.
I did make an effort, if you could call it that, by speaking with my neurologist about disease management through healthy living, but I didn’t make any of the changes I told him I would. Thankfully, he was patient with me to wait until I was ready to get onto a drug regimen to manage my MS.
Once on Copaxone and later Tecfidera, I managed my flare-ups. Any exacerbations I got tended to be mild compared to the ones I got off medication. I was still super stressed, not exercising, not eating well, and not feeling good. The medication worked overtime.
MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.
A Typical Day with MS
If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.
My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.
Toddlers are too young to understand deep, philosophical lessons. They are too young to understand moral quandaries. They are too young to really grasp right from wrong.
As parents, we know that just because they can’t understand it, doesn’t mean it shouldn’t be taught. I feel like this is a “no, duh” moment many parents are saying to themselves right now.
Yet an issue I run into as I parent Jai with Ash is knowing what lessons to teach and how best to teach them. Questions I ask myself on a daily basis: is this something worth correcting Jai on? How do I correct him, with a warning or straight to time out? Should I follow the mainstream recommendation or go with my instinct?
A mentor once told me years ago, well before I met Ash, that you are never truly prepared to have a child. So if you want to have one, you have to just jump in and learn as you go. It won’t be easy, but the payoff will be worth it in the end when you have a functioning, well-adjusted adult that wants to have a relationship with you after they’ve moved out of the house.
But in order to achieve this, I have to begin training Jai to be polite, thoughtful, a good listener, able to share, and comfortable with adults as a toddler. The list is a bit longer than that, but those are the main concerns I have on a daily basis with a toddler.
As I am training Jai, I have to be mindful of several things: I’m an adult, what battles to pick and being humble throughout the whole experience.
For the month of November, I am taking each day to highlight some element in my life that I want to express my gratitude. This could be something deeply personal or just a passing appreciation for something more superficial.
Before Ash and I had Jai, we adopted three cats.
And we were, and to a lesser extent still are, crazy cat parents. Our cats are spoiled. They have multiple beds (some are heated) around the house, two big kitty towers, a box filled with toys, a drawer filled with treats, and wet food for all their meals.
They are well-cared for and loved by us, with Jai learning how to respect animals and be gentle towards them.
Furbabies for many, as was the case for us, are the first and sometimes the only children for couples. Two were present for our wedding, and all three were there during my diagnosis. They were there when I went into labor and will hopefully be with us for a while longer for some more milestones.
Because they were there for major events in our relationship they are huge emotional supports for Ash and myself. For that, I am grateful to be able to share my life with them and all they do for us as devoted companion animals.
I am especially grateful for Lytton and all the love and affection he gave me from day one.
Little Ball of Love
Lytton is my cat. He’s a beautiful, silky Bombay rescue that has a smart aleck attitude with an emphasis on smart. Sure, I am slightly biased, but he really is an awesome cat. We went into the rescue and Lytton picked me instantly. I was looking at a couple other cats that were available for adoption, but he kept reaching for me and looking for my attention.
How could I say no? We ended up adopting him with his foster brother, Gerard.
Wherever I go in the house Lytton has to follow me. Many nights he sleeps on my pillow or between Ash and myself. Recently he’s taken to nipping Ash if he gets too close to me in bed. If I go away for a couple of days he acts mad with me, but within several hours he won’t leave me alone, nuzzling me until I give him some scratches and my lap.
Most endearing is he can pick up emotional states and will provide comfort when a person (not just myself) feels low. We’ve had several guests come over and Lytton revealed that they are going through something by way of pestering them for attention.
Lytton has effectively taken on the role as a second father for Jai. When I was nursing Jai he would curl up alongside Jai as a barrier to prevent rolling. I don’t believe this was his intention, I think it had everything to be close to the little heater newborns are, but it was a sweet gesture.
When Jai wants alone time in his room, Lytton will perch on the rocker almost as if he’s watching over Jai. Lytton truly seems invested in Jai’s wellbeing which makes sense considering he never left my side while I was pregnant. Whenever I was home, Lytton was my shadow. I have many pictures of him using my belly as a pillow or reaching his paw out to touch me while we tried to nap.
When I was in early labor, Lytton plopped himself on my lap and slept with his head on my belly and purred until I had to change positions. He was a wonderful comfort to me and I think even for Jai in those moments (I can imagine the vibrations from purring was soothing immediately after a contraction).
Lytton while I was in early labor.
A Lifetime of Friendship & Comfort
Having the cats there for me during the diagnosis, pregnancy, labor, and even today really helps keep my stress levels down. Lytton or Christopher will curl alongside me on the couch or the bed and even if we aren’t touching, their presence brings a lot of comfort to me.
With my MS, having that emotional support for my stress is extremely important. It wasn’t until I started being more mindful of the connection between stress-levels and flare-ups that I recognized the importance of our furbabies. I started taking the time to sit, stroke, and enjoy my time with them more than before as a means to calm down.
Now, when it’s time for my afternoon nap, I call out to Lytton to let him know I am heading upstairs for a nap. Sometimes he follows and on the times he does not, I wake up with him alongside me in some fashion.
While I know Lytton, Gerard, and Christopher’s time with us are short, I know that they provided us with a lifetime of love and memories. I think we will always have a furbaby in the home with us, whether it’s feline or canine, because of the comfort they provide us. I also know that having a companion animal helps children learn compassion, something that I want to teach Jai. For all that they do, even if it’s nothing but be available for a quick scratch, I am grateful for our furbabies.
Do you have any furbabies that help care for you in little, endearing ways? How have they provided comfort in your life? Leave your stories in the comments.
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For the month of November, I am taking each day to highlight some element in my life that I want to express my gratitude about. This could be something deeply personal or just a passing appreciation for something more superficial.
I am not about to turn this post into inspiration porn (don’t worry, that link is safe for work), but I do want to express gratitude for the wake-up call my MS gave me. I call it my “rock bottom” because it forced me to make some decisions about the direction I wanted to take physically, mentally, and emotionally. I do, however, wish it hadn’t taken a chronic illness diagnosis to make these changes
I would be more than happy to give back my illness and keep all the healthy changes if given a chance.
Prior to the Diagnosis
To understand why I am grateful for my current health, it’s best to compare it to where I was physically prior to my diagnosis.
I’ve hinted at my state in previous posts throughout the blog, but I never fully discussed my mental and physical state. Partially because it was never necessary to the post, but mostly because I was ashamed of where I was at in life.
I was delusional about my physical health. It’s easy to see that on the other side, but living in the middle of it I thought I was healthy. I would eat vegan, run, do yoga, try to meditate when the time would allow, but essentially go through the motions of what I thought was healthy living.
And then I would wonder why I wasn’t losing weight. I justified it by saying this to myself repeatedly:
I am just stressed out right now, so once I get beyond this period, I will be fine. I need to eat like this because it’s how I am coping with my stress.
Apparently, my 5’3″ body is meant to be 160 pounds. Since I can’t lose the weight, that must be my natural set point.
I also didn’t feel better, I was just grumpier for waking up earlier and sweating a bunch with little to no payoff.
Let me be clear and say that weight is not the absolute indicator of health: athletes can be considered overweight and be at peak physical fitness. A person can be a normal weight and be coping with an illness of sorts. Weight can be a symptom of a bigger problem and it can also cause other issues, but looking at weight for whether a person is healthy or not shouldn’t be the only factor. It is just one of the factors.
Through most of my adult life, I was carrying around an additional 20-30 pounds. This extra weight played a negative role in my overall activity level, my mood, my energy levels, and my depression. I firmly believe that these factors exacerbated my MS symptoms. There were days where I would come home after teaching and fall asleep for hours until Ash got home, wherein he’d have to make or order us dinner.
It was always a slog to get any important work done for school and professionally speaking.
Prior to my diagnosis, I had very little motivation to make any positive changes in my life. I would do it in spurts, but those would fade out when I didn’t see immediate results. I had nothing truly motivating me beyond “this is what our culture tells me to do.” It wasn’t enough and therefore I couldn’t stay motivated to continue.
I figured I could never get into peak physical and emotional condition because I just couldn’t. No other reason other than that: I just was not able to be healthy.