When my symptoms first started - tripping on the stairs into the office - we laughed. It seemed funny at the time. Until I woke up one day and could not see out of my left eye. Straight to the eye doctor a few hours later, and scheduled to come back the following day so my eye could be dilated. When I woke up the next day I noticed my left leg felt off somehow. I had already secured rides both ways and since I did not have to drive to the appointment I did nott really think about it for a while. Until...
The eye doctor I saw scared the hell out of me when she told me that in her opinion, I needed a neurologist - not an eye doctor. While I appreciate her methods now (she scared me into seeing a neurologist within the next day) at the time it wasn't too cool. I was so scared. By now she had uttered the words MULTIPLE SCLEROSIS and we are not talking 23 years ago now, so I knew literally nothing (beyond that the Mickey Mouse Club lady had it) and that meant I thought that I was dying. It was a horrible time for me. Particularly when I found out the treatment course.
Right out of the gate, after the joy of my first MRI (something I actually sleep through now!) I went through my first Solumedrol treatment. Not fun. Then I found out that the treatment was going to be a daily shot (Copaxone) and that shocked me to the core. I was married at the time... Not a huge surprise that we lasted just a few years after my diagnosis before splitting up... He helped me a lot in the beginning. He did the injections for me because I was too scared to. It took a while before I was brave enough to do it myself, without benefit of half an hour of freezing myself with ice packs. Eventually it did not bother me too much but it got old and annoying. But, I also felt lucky that there was something helping to control the course of my MS.
The first few years were a roller coaster of relapses, a lot of missed work, and an entirely new world of using a wheelchair and parking in handicapped spots. It took a while for me to see myself that way. Now, I'm so adjusted to it that it doesn't even occur to me either way. Sometimes it bothers me that I'm not quite strong enough to walk through the airport, or stand through a concert. It's been a long time. A lot of experiences, good and bad. A lot of great people and some pretty rotten ones.
Eventually, I had to quit working. A few years later, I had my only child (my now 12 year old son). As I write this I'm in the middle of my first relapse in years, getting ready for another round of Solumedrol (although now it is oral instead of an infusion, just fine with me) and shortly after that? I'm starting a new therapy (I can't spell it because am not familiar with it yet!) so I have high hopes for that - even if it does not cause dramatic changes. Of course the big bad part of this is that one of the side effects is breast cancer... I lost my mom to that disease in 2015 (the same year I lost my little brother, but in a totally different way) and at that point started caring for my father, he is now 79 years old and a disabled veteran. This is a little rough when you throw in the fact that my son is autistic. My sister was diagnosed with breast cancer three years later. So, there are three of us in the household, three of us are disabled, and I am the primary caregiver. It is rough sometimes.
I am okay. My son is okay. We do okay. After this many years, that is about the best I hope for. I gave up on FantastiC a long time ago. That may sound depressing but that is not really the way it is. I have just learned to accept that this is my life and I do not fight it anymore, or resent it, or spend my time wishing for something else. I am happy with what I have.