Chronically Joyful

I’ve gone dark on this blog almost immediately after starting it simply for the fact that I am currently experiencing a slew of new and aggressive symptoms. In working through these, I am finally at a place where I can comfortably write about them to share with you lovely readers to either validate the things you have been through (or are going through), or just share some information around symptoms that are known, but not really written about. 

In August of 2023, I was sent in for a week of Solu Medrol IV infusions as it was identified that I was relapsing. The way I knew this was because my left eye (the blinder one, as a contact lens wearer) was in constant pain and I felt like I was missing specific areas of vision. When I brought this up to my doctor, he ordered the steroids, but never told me why. 

After researching myself, I came to the conclusion that I was suffering from a bout of Optic Neuritis. I finally felt less crazy, because trying to explain to someone that I could see, but was missing weird sections of my vision (and not completely) was beginning to feel impossible. Now at least, I had a name for the thing that was happening to me. 

8 months later in April of 2024, my Optic Neuritis has hit its breaking point where I am now experiencing Diplopia/Double Vision. I discovered this while I was driving to work one morning and the yellow line on the left side of the road was also showing in the center of the road – it was like looking through a kaleidoscope, but much more terrifying when driving a vehicle doing 60 MPH on a 3 lane highway. I made it to my destination in one piece, but only if I could drive with one eye closed (it sounds counter-intuitive and dangerous, but ironically is safer in this case). 

Some days, I wake up and think I’m completely back to my normal state of self; then I step outside of my home and the world begins to mix and match. I’ve also found that it gets worse when I’m physically active, but I’m finding a direct correlation with standard heat intolerance there. I would be lying if I said those moments where it onsets again aren’t absolutely heartbreaking because of the sweet moment of thinking I was “better,” or more realistically, back to my baseline. 

I have been living with MS for a little under 10 years. I have understood how to fully manage this condition. I have taken curve balls with grace and stride. This is outside of my “comfort zone” though; my autonomy has been taken from me. I cannot drive in this current situation, and every time I walk my dog or go for a light jog, I need to close one eye in order to safely cross the street. For the first time, I had to request a working accommodation for a disability at my job. I need to explain to new teammates why they will not be able to meet me for the foreseen future. I continue to explain that I don’t have information or a timeline on when, or if, I will ever recover. 

I have made it through navigating this illness only through grit (and of course, joy!) and deep resolve to beat my odds. To have a part of myself taken; to have my autonomy taken; to have my identity shaken; I have not been taking this lightly. I have been knocked down, but I am determined to stand right back up. As I always say, I have MS but it does not have me. I will continue taking black seed oil supplements, exercising, eating right and attempting to reduce my stress. I will also be getting a follow up MRI in the coming weeks to really understand just how bad my situation is though I already know, considering it hasn’t improved since August 2023. 

If you have any experience in this arena, please reach out and let’s connect! I’d love to learn of others’ experiences, but also learn new ways to cope and get through this in one piece. I’ve already heard of prism glasses & eye patches, so I’m always open minded.  

As always, reader, thank you for being here, and always find the joy in things!