Hello everyone. Today I am starting to fill you in about my journey with multiple sclerosis, and through many posts I hope that I can help you come to an aha moment, like I have from others in our community.
I started having symptoms of MS when I was 23. I lived in Chicago, had a good job and my social life was not lacking. I was pretty active, and liked to walk home from my job in the south loop to home in Lakeview, run 5k races with my friends and played in the Chicago Social Club leagues. When walking home one day, I noticed my right leg got weak and started to feel like I was dragging it; of course I thought it was just a pinched nerve as it would go away just as quickly as it appeared until it didn’t.
I remember my first “MS attack” vividly; I was running a 5k, and my leg stopped working in the middle. My friends were ahead of me and disappeared in the crowd. One of them had my keys so I had to catch up, so I started trudging and dragging my leg. I have to laugh at that image now – why didn’t I just stick my key in my bra? I eventually caught up, nursed myself back to working and again, chalked it up to a pinched nerve or tweaking my back running.
Nothing happened again until I moved to the greater Boston area about 6 months later. It was a huge move for me, quitting my job, selling my car and leaving my friends for a chance at love. The good news is that it was worth it, and we’re still together. I think the stress of that experience made the MS say hello again, as I started to have my right side go numb again and again and again.
Many phrases were on repetition for a few months – “its just a pinched nerve” “I’m not drunk” “I don’t know what is happening” and the biggest one of all, “I’m sorry”. Finally, I went to the doctor, who said there’s an opening with a neurologist next week, and I think you should see him.
In that first visit, April 1998, the neurologist told me he was pretty certain I had multiple sclerosis, but they’d need to do tests to figure it out. I refused the spinal puncture, but did the very long MRI. I didn’t realize that I was very fortunate to hear a solid diagnosis right away – it doesn’t happen for everyone. The MRI confirmed his diagnosis, and ordered my first round of IV steroids.
The steroids worked their magic and the feeling in my right side came back for the most part. But man, those steroids are so tough. Mood swings out of the air would come and go, and sleep was something that avoided me for the most part. Trying to operate on no sleep but with the drug pumping through your veins is interesting, sometimes my house would sparkle before the end of the treatment. And, I had a hard time with the metallic taste the drug presented; it was impossible to eliminate.
That initial experience didn’t really wake me up to what was happening in my body. Bouncing back a bit from the course of steroids let me refocus on trying to build a career and social life in my new home. I had MS but I used that as an excuse for when I didn’t feel well, and didn’t seek out to get better or feel what was happening in my body…not right away.
Looking back, I realize I was lacking in the idea of self care. I was in my early 20s, very focused on finding my path to success – and what that looked like. I wasn’t fueling my body properly, and I didn’t care to feel my body; really the only time I did was if I felt hungover after a late night and then I’d just work to mask that feeling. I bet I only spent 1% of my energy every day focused on myself. By doing that, I let myself get sicker instead of taking care of my body and mind.
When you were diagnosed with MS, did you have any self-care program? How quickly did you implement it after your diagnosis?