Sometimes we run into what is called a non-story. We start writing and then realize that there really isn’t much to write about. When I was in the ER, I was really excited to write about everything that happened. I told my nurses and techs about it. It was exciting and scary all at once. Then I got home and I started getting better, and I realized that this story wasn’t going to really have any developments for another three weeks. That doesn’t make a very good story. And I questioned why I started a blog (other than a centralized place to not tell the story 1,000 times).
Then I realized I get asked daily how my eye is, and maybe I should update and let you all know.
My eye is… frustrating. Sometimes it is really awesome and almost like everything is just extra bright (because when I went blind it wasn’t black like people thought, everything I saw was actually white blindness and the white lingers). I was warned that it could take a year to get back to what I would consider normal. Me, being the control freak that I am, refused to accept that. Then I realized I don’t get to control this thing (but I certainly won’t let it control me either).
I’m hoping it doesn’t take that long, because this Cinderella act is getting old. I pretty much hate asking people for rides, or a place to stay because it’s night and I can’t drive.
So, even though I have really good days with my eye, I also have pretty bad days. They kept asking me in the hospital if I was seeing double, and I wasn’t because I wasn’t actually getting a second picture from my eye. Now, sometimes my vision is double. It’s hard to focus on things sometimes because I’m not getting the full picture. Sometimes, when I am tired my vision will decrease, or the double vision will get worse.
Don’t get me wrong, I am so happy that it’s even back this little bit. Driving during the day is far less scary, I can see more of the whole picture, I don’t have to cover my eye to read, the list goes on.
I was warned there would be triggers for my vision. The two specifics my neurologist mentioned were stress and if I overheat. I was told if I workout, to not be alarmed when my vision decreases. I thought she was exaggerating; that she was saying this and it wouldn’t actually happen, or it would happen rarely. Yea, she wasn’t kidding. I’ve been trying to work off this steroid water weight/ weight gain (steroids are the devil and out to get me). Tonight I was pushing extra hard and suddenly I realized I was almost completely blind in my left eye again. It was right about then that I realized this might be a long year. It’s not going to stop me, I’m just going to monitor things closely and watch what happens.
As for the future, my neurologist told me to inform myself on MS so I know what my plan is when I go in a few weeks. She has her suggestions, but wanted me knowledgable on the subject. I don’t think she knew what she was doing when she told me that. I want to know every facet, every tiny piece of information that I can. So last night I planned to spend a few hours researching treatment options. Since I’m not clinically diagnosed with MS (you aren’t diagnosed until you have a second attack on a different part of your central nervous system. My lesions are “clinically silent” since they haven’t affected anything yet, and therefore not a cause for diagnosis) the treatment would be towards delaying the onset since I’m high-risk for a second attack because the first came with lesions. I then spent hours researching exactly what MS is and how much information is known on the topic (I already knew it wasn’t much).
I ended up forgetting that I was researching treatments because I decided I wanted to find out how the disease works, what they are researching for a cause and everything else before I looked at treatments. I’m coming up with my plan of attack. I’ll know more about what that means in a few weeks, but I’m sure I’ll get the urge to write again before then.
I will say that I feel more like myself every day. Suddenly on Sunday it was like I was renewed and my energy came back rapidly. Unfortunately, I was quickly re-sidelined on Monday when I was hit with not one, but two migraines.
I got up ready to be back at work and have energy to do it, and suddenly I realized I was blind in my left eye. Not just like a step back, but completely blind. I couldn’t see my hands, or my arm or anything. I panicked. I told my mom this was what I was afraid of: How would I know between an MS attack and a migraine when they both start the same way. I then realized that, even with just my right eye, I couldn’t focus. My mom made me go back to bed and she called my boss to tell her that we weren’t sure exactly what was happening, but she was making me sleep for an hour and we would see which of the two it was. I woke up four hours later. I’m also not sure how I slept so long. At that point I had been asleep for 14 hours. When I woke up, I felt mostly fine, just a little headache. I went about the rest of my day and then at 3 a.m. I woke up with another one.
The most frustrating thing about these migraines is that I can’t take anything for them. My regular doctor asked me to not really take any medicine until my next MRI. All I can take is ZQuil, heartburn meds and Ibuprofen. I told my mom another migraine and the rules are gone and I will take something stronger. I don’t need to torture myself.
I’m fully back now. I’ve had my energy back all week. I’m glad to be back. Sometimes I think this disease really should be afraid of me.