I really don’t know how to begin a not so interesting story and keep it interesting but I’m going to give it a shot. This writing all starts with an article I read on MultipleSclerosis.net titled “Exiled” and it hit a nerve (go fig).
I had a happy childhood with parents who were fantastic, Dad always a hard worker who provided for the family, working crazy hours as a hairdresser and never let me go without. Mom was a PTA parent is the biggest sense of the word. She was amazing dedicating her life to her family. My paternal grandfather passed when I was very young and grandmother was always loving and would do anything for her grandkids until she passed in 2008. My maternal grandmother (who passed due to breast cancer in 1979) I never met but due to stories from my Mother, I always felt she was part of my life.
My first big loss
This brings me to my first big loss. My maternal Grandfather “Pop” who was my buddy, the person I could count on. I was his first out of 4 grandchildren and well would like to think that I made a difference to his life. In the 90’s he was diagnosed with colon cancer to the point where he had to have an ileostomy bag. This was my first interaction with sickness and loss. He survived until 2004 when he finally succumbed to his illness but did teach me you can go on. I remember (note this is all before I was diagnosed with MS) wheeling him down the stairs and taking him to dialysis and giving him insulin shots twice a day. I guess that's where it started, my caregiver mindset which still persists to this day.
The stress started piling on
Well he passed and I took it hard but I was still 99.9%. Fast forward to 2013, my Mom, my rock and the one person who was always there and in my life got sick. She didn’t tell anyone what was wrong till it was too late. She had kidney cancer that when finally diagnosed was already to the lymph nodes and she went from the strongest woman to in a hospital bed to passing all in a month. This was my second loss (start the piling on of the stress).
Diagnosed with a brain tumor
I married the love of my life in 2008. She was my world. I did anything and everything for her. Bought a house in Jersey and finally was getting on track. Before my mom passed she said that my wife's eye looked a little off and to see a doctor. Well she passed and we had a chance to go to a doctor. The doctor sent her for an MRI and that's where everything went south. She was diagnosed with a brain tumor and from 2013 to 2017 my life was dedicated to making her happy. She had 2 resections, a debunking, a cranioplasty, in and out of the doctors and hospitals and in 2017 lost the use of her left side. At that point the doctors said her tumor changes to a GBM and was pressing on motor function.
Sent for an MRI
Well this is where my story begins. She passed in September of 2017. Symptoms started showing with me. I thought my knees were shot. The doctors thought it might be something in the spine and sent me for an MRI. I went to the same hospital and MRI machine my wife frequented. It helped a bit because in my head if she could do it so can I. Well the doctors sent me to neuroscience, everyone knew me for experiences with my wife and asked what I was doing there? I didn’t know at that point.
The doctor said my MRI had lots of plaques on it and that I had MS. Now I’m 38 years old and told what was going on, I understand and just keep moving forward. I can see that I’m getting worse, harder to get up in the morning, going to sleep earlier at night. I met a great gal who cares for me and I return the sentiment. I thought long and hard as to my health and how I didn’t want someone to go through the caregiving I gave to my wife to see her slowly degrade.
The impact of stress on MS symptoms
They say stress is the biggest thing to cause MS and flareups and I have to agree. I wake up in the morning stressing about the day, 5am take my meds, 6am in the shower, 7am work, 5pm home and usually in bed by 8pm. What a life. This is the routine 5 days a week. Weekends come and things I want to do I can’t. I like flying my drone but I lift my head up to see it and get dizzy. I like going on road trips and driving but my legs are tired. I have to use a walking sick now, people ask what's going on, I tell them it was due to a car accident. I'm starting to realize my limits. I don’t like it but that's life. Things I was able to do 2 years ago, I can’t do now. Seasons come and go. Summer heat is horrible and gets me in the legs. Winter is better but more stressful because of a fear of falling on the ice. Spring is full of rain and the humidity gets me. I look forward to October because it's not hot, not rainy, and snow and ice haven’t started yet and I can get along.
Easier to say I have MS
So this brings me to today, it gets harder and harder just to do simple things. My girlfriend asks why am I so tired, I didn’t do that much. In my head I got up, showered, cleaned up the house, washed, folded and put away laundry, emptied the dishwasher, cooked breakfast, made coffee, fed and let the dog out. For me, it's a lot.
I know my dad is frustrated, he always asks how I’m feeling. And how many times are you going to say, "Not great"? He asks what's wrong, I answer I have MS. What else can I say, let's start from the bottom up, my toes are numb, my shins feel like ice picks, my knees are killing me, I always feel as if I have to go to the bathroom, my arms hurt, my neck hurts, my shoulders and hand hurt, my heads foggy, the light hurts my eyes. So instead of all that it's easier to say I have MS.
I have to keep writing the story
The stress is always there in 39 now. I own my one house and still work. I don’t know how much longer each will last. I'm scared and happy to wake up every morning - scared to see what's wrong today, can I walk all right, happy that I’m this side of the green and that I have a family who cares about me. Am I isolated? Yes, I want to do things I want to go walk the dog in the park, I want to drive from Jersey or California. I don’t think these things are in the cards but what to do? Give up? Not in my vocabulary. I just keep moving forward, I don’t know what tomorrow is going to bring but I have to keep writing the story. In the end that all we really are and have is a story, we just have to try and live our lives to the fullest and whatever is thrown at us we need to keep moving forward.
Does your employer provide workplace accommodations due to your MS?