multiple sclerosis

When the kids were small, I loved a house filled with chaos and laughter. I had always loved children and worked as a therapist for children with Autism before being a stay-at-home mom, both of which took patience. My joy was participating fully in whatever they were doing. If they were running and playing chase, then I was playing chase. If they were swinging, then I was swinging. If they were climbing trees or skating, then I was right there along with them. It was a blast, and I loved every part of being a mom, especially the snuggles and reading time. Having friends sleepover, meeting at the park or museum, going to concerts, and traveling made everything feel good and centered in my life. However, that did begin to change when my mood started suffering.

Depression and anxiety became beasts too big to bear. I couldn't comprehend why all the things I'd always loved so dearly now felt overwhelming. Noise put me on edge; the screams and laughter began to irritate me; it was no longer the more, the merrier mentality. It became more than my two felt like too many. I was no longer the creative, fun mom who thrived in a house full of guests; it was like I was a stranger who couldn't handle noise or control my rage anymore, often snapping at my family and friends about the minor things. It left me feeling suicidal. I hated myself for how I was treating others, but it was like a rapidly boiling pot that couldn't contain the steam.

I felt so disappointed and ashamed of myself. I sought help and started medicine to curb my current mental difficulties. The medication made me feel flat and have no emotion, which didn't feel much better, so I went on to a Functional Medicine Doctor who restored peace and balance in my body. The only problem was I couldn't repair the damage done to my family and friends. I felt embarrassed and so sorry for the way I'd behaved, but I could do nothing to alter the damage done. I'd alienated just about everyone, and understandably so. I felt very alone but tried to be ok with it since it meant I wasn't saying hurtful things to those around me. My husband would say, what's wrong with you and my only response was, I don't know. I'm sure he thought it was a load of bull, but it was the honest, cold hard truth. Everything was different.

The world felt like sensory overload, and I couldn't ever tone it down to a comfortable setting. Life, as I dreamed about, didn't exist for me. I continued doing whatever was recommended by my doctor, and my mood remained stable until I had my next big flare. That turned everything upside down, and again I was left wondering what was wrong with me. All the things I loved just felt too hard. I was an outdoorsy kind of girl who was now paralyzed with fear and stopped going on adventures. I was a spontaneous person who now felt panicked without a plan. I was the person who loved a good road trip, but now it just caused anxiety. I was the fun mom who went from doing everything with her kids to barely functioning throughout the day. Life was challenging not only for me but also for my family and friends. I was pretty much a stranger to myself and those around me.

I almost had a sense of relief when I received my diagnosis. It is hard knowing something is off but not knowing what it is or how to fix it. My mood was my biggest issue, with fatigue not far behind. Looking back at pictures, it was interesting to see oh that was the last time I walked on the sand at the beach, and that was the last hike I went on, and that was the last time I skied, and that was the last time I was able to go to my child's soccer game unassisted, and that's the last month I drove, etc. My mind is scrambled but becomes coordinated again, sometimes with visual cues.

Travel is always something I love and yearn for, but that also changed. The last big trip I remember successfully doing was Italy. It is my most loved trip of all time and one of the happiest points in my life. I loved the culture, the people, the history, and the beauty of everything it had to offer. I remember walking 10 miles a day without so much as blinking. It was truly unique, and all the adventures played on repeat in my head. Other than Mexico, it was the first time I'd ever traveled abroad, and I felt ok staying a while longer. Then two years later, we went to New York. I remember feeling a little different but couldn't put into words what I was feeling. I have always loved New York, but I couldn't wait to leave this time. Everything was overwhelming, and it was the first time I'd stayed back at the hotel to rest rather than taking in as much as possible. Unfortunately, that was the weekend of a significant change with MS.

I continued trying to do everything I always had after that trip, but my body was giving me pushback. It'd make me moody, and my family started calling me Ms. Moody, which made me laugh along with them at the time. Little did I know that would be the new norm for me when traveling. New Orleans was always another place I loved to wander and taste food along the way, but that too became a time when my children and husband set out on adventures while I stayed in the room to nap, trying not to hold anyone back. I remember the anger and frustration I felt through the tears. Traveling had always been number one on my list, but now it just left me feeling gutted since I could not explore and do as much as I wanted.

Since being formally diagnosed, Barcelona and Paris were the first and last overseas trips we've made primarily due to COVID and HSCT treatment. We flew, and as soon as we landed, I began throwing up over and over again, landing myself in the hospital. We were scheduled to see Messi play soccer, my son's dream, and I thought I was about to destroy it. Fortunately, we typically travel with their GodFather, who took them to Barcelona while I received IV fluids and antinausea meds. Fortunately, I stabilized, and my husband made it in time to take them to the game. Unfortunately, I was so exhausted I missed out, and it is still one of my biggest regrets in life. Our entire trip was overshadowed by everything I couldn't do and had to sit on the sidelines for, so I didn't hold my family back. However, I decided to go on a bike ride around Paris. Again, I was so exhausted but glad I went until we were on our last block, and I ran into a car. I was scared and almost in tears from embarrassment and exhaustion, but the agitated gentleman was much nicer than I probably deserved. That ended up being the trip I liked least, and anytime someone proposes going again, I'm not too fond of the thought. Paris is beautiful, but it seems almost pointless if you can't explore it on foot.

As my disease progressed, I could no longer ski on ski trips because I couldn't feel my feet, which seemed unsafe. When my husband was out of town, my sister had to stay with me because I couldn't make it through a full day of meeting all my children's needs. Sadly, they had to grow up far quicker than most kids because it was an all-hands-on-deck situation when I was sick. They will probably never know how much guilt is associated with the need for their help or how much I genuinely appreciate it, but life didn't seem fair for such great kids to have to help take care of their mom, yet not once did they ever complain. Instead, they adapted and did whatever was needed to help, and I am forever grateful for their support.

So, what does life look like for me after HSCT? Well, I can drive. I can take walks unassisted with my family. I went from not being able to ride the Peleton to doing 20 min rides. I am not as clumsy, which led me to trip and fall all the time. I can plan and cook what I want again. I can go to soccer games unassisted. I can travel without a built-in day of sleep. And most importantly, I am no longer sitting on the sidelines, missing out.

Sometimes, my life feels like a dream since I never thought I'd regain any of these abilities. I take my kids and their friends places anytime they want to go. I love being social again, hosting parties, and the noise and chaos at home. While I cannot accomplish everything I did before diagnosis, I can get things done over the course of a day rather than picking the one thing out I planned to do that day. I can also remember how to use a computer, and my brain has been organized enough to allow me to do this website which wouldn't have been an option a year ago.

Life feels different now, and I still haven't tried everything to know what I'm capable of yet, but I did walk in the sand on the beach and play in the ocean with my family, which I hadn't done in years. We are skiing over Spring Break this year, and I plan to attempt skiing. I also have my door wide open again for friends and family. Life is good, far from perfect, but closer than I thought I'd ever be again. I love these crazy kids of mine and appreciate all their love, acceptance, and patience. They loved me unconditionally, and I feel like the most undeserving person after speaking to them with such a harsh tone sometimes. I also appreciate my sister always helping me when I needed it most. I could not have done what I did without her. I appreciate my sweet friend Amber, one of the bravest warriors I know, reassuring me that all the emotions I was experiencing were a normal part of the process. I am grateful to my parents for teaching me strength and perseverance, reassuring me I always had love and support in whatever capacity needed. I am thankful to my in-laws for making HSCT possible. I appreciate my husband covering everything at home to have the luxury of focusing on recovery with no other responsibilities and getting me to and from Mexico safely. Finally, I am thankful for my friends who gave support, made me laugh, and continued to accept me even though I'm a very forgetful and challenging friend to have. This journey wouldn't have been possible without everyone involved, and for that, my gratitude runs deep.