Marriage & Multiple Sclerosis – Love, the Wife xoxo

When I first saw Collin (my now husband) I was in awe. I was a Freshman in college at Texas Tech and he was a Junior at the time. My girlfriends from my sorority invited me to this frat house and of course I said yes. We were all in the living room and Collin was sitting in the middle of the couch between his 2 fraternity brothers.

As soon as I noticed him I turned to my friend and asked her who the beautiful, tall, brown curly haired, green eyed guy was. She said “Oh that’s Collin.” I said, “I’m going to date that man.” She rolled her eyes and laughed, “Everyone wants to date him.” I told her to mark my words. Little did I know I would be sharing our marriage story.

I knew he was the one for me a million times. Collin showed up in many ways. Through his character, personality, values and priorities, how he treated people, and how people treated him, I was obsessed. But the ultimate way he showed up and confirmed my desire to be with him for the rest of my life was my Junior year at school.

What I felt across the room was a magnetic pull towards this man. I had no clue who he was or what he was about, but I knew we would be something. I didn’t read into how I knew this or when it would happen but I knew there was something about him that I was connected to. The feeling was paulpable.

Less than 6 months later we were dating. We dated through the remainder of his years at Tech, through long distance, moved back to the same city after graduation, and were later married.

How I knew he was ‘the One’

We had been dating for just over a year. Everything was going well until the day came when I woke up to numbness. I had no feeling in my hands. I figured I just slept on them wrong and that the feeling would return on my way to class. Except they didn’t. Instead, by the end of the week, the numbness and tingling had spread from my hands, throughout my arms, to eventually my lady parts, thighs, legs and feet.

In less than a week I went from a normal life to being completely debilitated. I was in constant pain experiencing the most insane headaches I had ever had with each pound in my head only getting worse. My handwriting had become unrecognizable to me. My cursive was beautiful, my signature was my favorite thing to doodle on every page of my school notes. By then, I could barely hold a pen or pencil. I loved sushi but I couldn’t use the chopsticks which I had done since I was 5 years old. I could barely type my notes or papers. I couldn’t curl my hair, put makeup on, tie my shoes, or clip my bra behind me. I was scared and terrified of what was happening to me.

But, every step of the way Collin was there. Collin, who was in his last semester of Engineering and had his own responsibilities to take care of, was also helping me with mine. Collin typed all of my papers and essays and wrote out all my homework. My assignments took hours to write because I had to speak it out loud as he typed…It was the only way they got completed.

Collin slept over every night so that he could help dress me in the morning. I couldn’t claps my bra from behind me. He helped me with all my small jewelry pieces that I couldn’t clip together, and tied my shoes. He took me to doctor’s appointments and let me hang on his arm when I couldn’t walk with stability. I fell often. Collin did this for weeks. I knew that this man would do anything for me and that when even the unimaginable happens, he would be there for me. I was forever grateful for him.

When Collin had to leave for class my girlfriends and roommates would help me curl my hair or do my makeup. They were amazing support for me as well. I received my diagnosis after the 3rd month of this. I had Multiple Sclerosis.

How my MS affects our Marriage

I definitely will not sit behind this computer and say everything is peachy and that it’s “not that bad”. There are days that it is that bad. Having Multiple Sclerosis or any chronic illness has its days for sure. I can’t imagine what it is like to be on the other side of the disease…to care for, live with, or love someone with a chronic illness.

All I know is that those who do love us, who do care for us, live with us, and choose to partner with us in marriage, are heroes too. They are warriors. I have such a grateful heart for anyone who has ever had to watch someone they love go through life with a chronic illness. It is messy and it is hard. Thank you from the bottom of all our hearts, for just being there for us.

With that being said, Collin and I want to get real about how my autoimmune disease has affected our marriage in many ways…good and bad. My experiences and thoughts are below. Collin’s can be found in my blog post, “Marriage & MS (His Edition)”.

The Hard Days

The days I hide my disease from my partner. I can’t leave the bed. When all the sleep in the world still can’t shake me of the never ending fatigue I experience every day. One day I may be out of bed at 6:30 or 8:00am and the very next day I’m stuck in bed till 11:00am and not by choice. I hide the sick days from the world and from Collin. I’m lucky that these days usually occur during the work week so that Collin never has to see me like that. It’s embarrassing but I can’t help it.

I give credit to Collin in the next paragraph for never making me feel like a sick person. But, sometimes I do need Grace. Sometimes it feels like he (and my friends & family included) forgets I have MS. Just because there are days where I can make it to every coffee, lunch, meeting, happy hour and birthday party, doesn’t mean my pain or fatigue stops. And just because I was able to do it one day, doesn’t mean I can do it the next day. When I say I’m tired and Collin says “I’m tired too” it frustrates me. (A lot of people say this to me). It frustrates me because I fight the pain and fatigue all day, every day. What is tiring to a fully ‘able’ person, doesn’t come close to what someone with a chronic illness experiences. There are times I need to give myself Grace but I also need Grace from other people. I have to remind myself that he can be tired too.

The days I live in fear of the future, are the days my MS steals from me. I can get myself caught in the rabbit hole of fear for what the future looks like. Fear that one day I may not be ‘able’. Fear that I may be completely dependent on Collin. Fear that he could leave me for someone who can stand, who wouldn’t need a wheelchair or cane, who wouldn’t be bedridden, who could play with their children for hours, who could walk through an entire city without breaks or naps, who didn’t have to spend thousands of dollars in medical insurance and medicine. I know this fear of mine isn’t fair to him, but I experience it occasionally.

When I want to do it all but I can’t, my stubbornness and pride show up. For instance, rather than leaving a museum halfway through because my legs are in so much pain, I would walk through the entire thing just so Collin doesn’t have to miss it. And so I don’t want miss it with him. Sometimes I sacrifice my pain to experience all that I can now, even if it means I’ll be hurting a lot later. This usually is unfair for him, because he knows that I’m in pain, but my stubbornness won’t admit it, as we both walk through the museum in our own pain about it.

How our Marriage is the best thing for my MS

There is no way of telling how Multiple Sclerosis shows up in someone’s life. It is different for everyone as no one’s case is the same. Collin and I are constantly learning and growing through the ups and downs of MS, combined with the mountains and valleys of Marriage. I find myself still in awe of Collin, like the first day I saw him. Only now, I feel so connected and grateful to be the wife of this good man.

I’ll give a few examples of the ways Collin makes me feel safe and supported in our marriage through all stages of my MS, because the good far out-way the bad. If you’ve read ‘The 5 Love Languages‘ with your partner, you understand there are many ways you need and receive love. The way you need love from a partner can be different than the love you need from a parent, boss, or friend. I believe when it comes to my chronic illness, I feel and receive love differently than normal. Normally, I am physical touch, quality time and gifts (in that order). But when it comes to my chronic illness, I feel I am loved best through Acts of Service.

Click here to take ‘The 5 Love Languages’ test with your partner and be sure to buy the book to learn how the love we give and receive are different.

See some of my favorite products to help ease MS symptoms and pain

The Better Days

In the beginning of my diagnosis, I had originally wanted a holistic, natural, approach. One in which I would not partake in medical infusions to treat my MS. What I didn’t realize then, was that medicine could prevent me from experiencing further disability in rapid speed. Even though everyone else disagreed with my choice initially, (and i mean everyone – doctors, parents, family, friends, etc), Collin listened to my wants and needs at the time…even though he disagreed.

When I first started attending events within the MS community, I asked Collin to attend a group yoga class of MS warriors with me because I was too nervous to go alone. To me, going alone meant accepting the disease, and I wasn’t ready to do that yet, so we both went. He hates yoga lol. And group classes lol.

Collin thinks ahead when we’re doing activities. He puts himself in a position to help me in case of the worst. When we were hiking up a mountain, he kept following behind me. The trail was big enough to walk side by side. I finally asked why he didn’t want to walk with me, only standing behind me…He told me he stands behind me in case I fall, he can catch me. And when we’re hiking down the mountain, he goes first in case I trip, he stops me.
If I’ve had a long day and I share that I am tired with him, he asks me what he can do to make me feel better. It’s usually drawing me a bubble bath or laying with me in bed.

Collin doesn’t look at me as a person with MS. He doesn’t make me feel little and doesn’t make me feel like I can’t do anything, he gives me the benefit of doubt.

When it was Collin’s birthday and I was exhausted from running errands to make his day special/working that I didn’t have the time or energy to cook his birthday dinner. Growing up, your birthday dinner was significant so I was really stressing about this. Collin helped me by cooking his own birthday dinner and didn’t think twice about it (although I felt horrible about it). I later realized I was more upset that I couldn’t get everything done in time and that I ran out of energy, than I was that he had to cook his meal himself. Collin reassured me that I had done enough and that it was all perfect.

I started realizing my leg pain was getting worse. I either always had this amount of pain and had been ignoring it, or it was actually getting worse. Regardless, I wanted to wear heels. I love wearing heels. I feel sexy in heels. I feel like I’m on top of the world in heels. But now, heels hurt me. It’s very upsetting. So when I want to wear heels into town, heels in Milan, or while traveling, I already know I’ll have to change at some point through our day/night. He doesn’t make me feel embarrassed for stopping, he doesn’t complain that he has to stop, he doesn’t remind me that this would happen, he just lets it happen…which is all I can hope for. Instead, with reluctant tears in my eyes every time…he helps me change into my sneakers.

It’s amazing how the smallest of tasks are the most difficult for me, yet Collin takes care of them without me having to ask. Sometimes it’s hard to ask for help. If I need a water, sports drink, or anything from the kitchen that has a tight lid, he loosens it before handing it to me (this is a huge difficulty of mine).

During our trips, he always carries my suitcase in one hand, with his own in the other hand. Also when we’re traveling and touring museums or exhibits, many are not ADA Compliant to this day. There have been times when I’ve been standing for far too long without a break and am wincing at the thought of standing for even 2 more seconds that I have to leave the museum halfway through. Collin follows me out. I hate that he does that, because I am fine sitting on the sidewalk outside the museum while he experiences the rest of the museum, but he never leaves me.

If I lay in the sun for too long or its incredibly hot, I start to get a large, red rash all over my legs. Collin makes sure I always have a seat in the shade or inside, if possible. He always asks how I’m doing or how I’m feeling (which is him asking if I need a break). This is the same for any seat…be it the train, bus, a bench in the middle of the store, etc. he gets me a seat to rest.

For the days I am super emotional and want to cry because I’m so drained or my MS was acting up all day, Collin holds me. Like, he literally holds me while I cry. Sometimes I like to be alone in our bed and cry myself to sleep, because that would make me feel better…and he goes to the guest room. Other times, I just want to cry to him about everything that had gone wrong, or cry out my emotions and thoughts and he just holds me and listens. He doesn’t try to fix them, he doesn’t tell me what I should have done or could do differently next time.

The talk of children has come up. In the event we wanted to try for children, I would need to stop receiving my medicine, which is a scary thought. My medicine is one of the reasons why my body hasn’t fallen apart yet. Stopping the medicine so I can carry a child is a heavy worry on my heart. Collin has reassured me that we would find a way, as there are many options, to have a possibility at a safe pregnancy and birth, for both me and any possible baby.

I live for now. I live for today. For a disease I can not control, I do not know what tomorrow will look like or feel like. All I know is what is in front of me. MS has taught me the importance of living today with the ones you love most.

Ultimately, one of the things I love most about our marriage is that Collin never makes me feel sick. He gives me that benefit of the doubt and treats me like any other healthy person. For example, when he knows I am capable of whatever it is I’ve set my mind to, but I’m retracting in fear, he calls me out on it. He doesn’t let my MS stand in the way of my dreams.

Finally, this entire blog is the biggest example. I told Collin I was debating quitting my job to launch a blog all about my MS and he has supported me every step of the way. He was there from the chaos, to the thoughts, to the drawing board, to the drafts, and the release. When I say this man supports me, I mean he believes in me as much as I believe in myself, if not more.