Today a major milestone in my health journey. Five years ago today, I had my very first MS flare-up. At the time, I didn’t know what it was, but I was lucky enough to get answers less than a year later.
Today’s post contains a more in-depth tale of my journey to the MS diagnosis and what brings about my flare-ups. Read the shorter version here.
2012: The First Time
A few days prior to my flare-up, I finished up my final classes, got my grades in, and flew up to Connecticut to help my parents move. As an only child with one year of marriage under my belt, my parents wanted to leave the cold hollows of New England and join Ash and me in Georgia.
This was a particularly hard journey for me because it meant that I would be saying “goodbye” to my childhood home. We moved in when I was 6 and I had many fond memories stored inside; there were over 20 years of memories and I was extremely sad to no longer have the ability to visit it.
December 13th would be my last night sleeping in my old room, and on the 14th I would help my parents finish loading up the moving truck and help them drive down to Georgia over the next three days.
I was not in a good mood. I was grumpy, irritable, but most of all, stressed out.
It was my second year teaching college students composition, struggling with normal Graduate school stressors, and now the final stress of losing what felt like a family member was too much for me.
But there would be more.
On the 14th, a little more than an hour away from my location, Newtown happened. I had to keep it together to help finish the moving process, but inside I was really struggling with all of my feelings. I had a tight burning in my chest as I swept and mopped the living room floor. I had to keep everything together.
We loaded up the truck around 6pm, my mom and I hopped in her car, and we headed south while my dad followed in the moving truck. We were headed towards Pennsylvania where we planned to stay for the night at a motel.
I slept on a pullout bed which was extremely uncomfortable. I was exhausted, so I didn’t think much about the day’s events, and I fell asleep.
When I woke up, there was an oval spot in my right eye’s field of vision. I had a slight headache and I was feeling unwell. At first I thought my glasses were dirty, but no matter how often I cleaned them, that spot wouldn’t go away. I rubbed my eyes thinking there might be some junk with no luck. I didn’t understand what was happening as we went to get breakfast at the local McDonald’s.
I had had migraines before, but I never experienced an aura prior to the migraine. Normally I would not have a migraine and then boom, migraine without warning. My migraines were increasing in frequency. I would have one once a year and I was starting to get them every 6 months or so, so when I looked up my eye symptoms, it seemed like a natural progression.
Figuring it was an aura, I was relegated to being the navigator when I didn’t have a black skull cap I bought at a gas station over my eyes to help manage what I thought were the beginning moments of a migraine. When we stopped in Virginia for the night we all thought the spot would go away with a good night’s sleep.
It did not. In fact, it got worse. It didn’t cover my whole field of vision, but it was more prominent. The day before, I could kind of see through this smudge. Now it was a translucent spot that partially blocked objects.
I was definitely scared. I didn’t know what was happening and how to fix it.
2013: The Aftermath
A week or so after we arrived safely in Georgia, I went in for a late night ER visit because the spot wouldn’t go away. They sent me to the on-call ophthalmologist and after several weeks of appointments, everyone was shrugging their shoulders as to what was the cause of my eyesight loss.
There were a few moments it felt like the doctors didn’t believe me, and I felt like they were trying to avoid the diagnosis of “psychosomatic,” and even I believed I was just expressing all the personal stress in an unconventional way.
It took until the middle of January before I woke up one morning with my sight mostly back. It would take a few more days, but it finally returned just before I had to go back to school for the spring semester.
I had another eye issue in March that went away as soon as I had a migraine, so we all assumed it was migraine auras and didn’t think anything about it.
In May, I went to England for the first time for study abroad, a dream since childhood. I had never spent time out of the country, so this was new experiences all the way around.
While there, my right earlobe went numb like I spent hours in the cold. England in May? I did spend hours in the cold: I had spent the day in Cambridge.
The numbness didn’t go away after I warmed up on the train back to London and spread down my right arm the next day. I was nearing the end of my dream trip and freaking out over traveling back to the United States. I wasn’t looking forward to going home because I wasn’t sure when I’d get to return to the UK (I returned the following May).
When I got home there were times when I had absolutely no control over my arm. It would not move. Back to see the doctor again, mentioned that it might be MS given some of the other symptoms, was brushed off, and they prescribed physical therapy. We thought it was a pinched nerve and my whole right side was essentially spasmed.
The PT helped loosen up my chest and arm, but I still had the numbness. In June my right eye got another aura, and after a stressful text conversation from a family member, my left eye got one as well.
I was now, essentially, blind in both eyes.
After two botched MRIs, I was hospitalized in September to take a 4-day heavy dose cycle of steroids. I went into more detail about the diagnosis process here, so I won’t rehash the past.
It took a couple more flare-ups over the past couple years before I made the connection: extreme personal stress caused my flare-ups. I was fine with professional stress from work and colleagues, but when it came to my personal life, if I stressed out too much over something, a body part would go numb or I’d temporarily lose my eyesight.
I am not talking about an argument with a loved one or having responsibilities placed upon me: I am talking extreme situations of emotional stress that facilitated a flare-up.
Moving my family to Georgia was so stressful that my optic nerve became so inflamed with Optic Neuritis. Coming home after 3 weeks abroad was so stressful, that my body went numb. Navigating familial relationships was so stressful, that my eyes became inflamed again.
Unfortunately, this sort of stress is normal. There would be no getting rid of it and asking others to modify their behavior around me would be inappropriate, not to mention impossible. The person who needed to make the changes would be me. I would have to figure out how to handle these particular occasions that pop up unexpectedly.
My MS neurologist suggested seeing a specific therapist and I got to work making some big personal changes.
In the Past: How I Handled Stress
Before I saw a therapist (and even towards the beginning of therapy), I didn’t handle stress well. I didn’t handle it well because I didn’t handle it at all. I would bottle it up inside and force myself to attempt to deal with it by either ignoring it or shoving it down.
Like many people, I had a lot of things to be frustrated about prior to my MS diagnosis. The diagnosis exacerbated my frustration and I would hold on to slights anywhere from the day before to 20 years prior. I did not let go of things or give myself a moment to just breath through the frustration.
I internalized everything and everything was my fault. By internalizing it, I thought I was dealing with it.
This ended up having the opposite effect: my body would get inflamed because it had no other means to handle the stress. This didn’t cause my MS, but because I probably already had it for several years, the MS made my body susceptible to losing control and function.
This wasn’t an effective way to live and if I continued down this path I would have many more flare-ups that the medication I was taking could not prevent. Each time I had a flare-up I ran the risk of not recovering back to 100%, so it was a gamble each time my body “shut down.”
I didn’t want to be causing damage if it was something I could prevent.
Present and Future: How I Handle Stress
As I went through therapy, I realized that I needed to let things go. I was in this bad habit of trying to control everything immediately around me and that had manifested into holding onto everything internally. Ash had been saying this to me for years, but I always believed he was just brushing me off; saying what he needed to say because he didn’t understand and wanted to end the conversation.
Turns out he was right.
I really did need to let all of my frustration go. I could not control everything: how people treated me, how situations played out, and how I could be everything to everyone. Once I started putting things in perspective and realized that a good chunk of the stuff I was holding onto was just useless baggage weighing me down, I was able to effectively deal with the stress and not let things bother me.
I found that I was able to cope with past slights and more importantly: I was able to overlook or not even notice current ones. I no longer viewed myself as the problem, thereby no longer internalizing it, and I put the problems right back where they belonged.
The biggest win for me and dealing with my personal stress: I no longer let people bother me. I don’t fight them and I don’t engage them on their level. I ignore it if I can and I act as if nothing happened. This is different from what I was doing before, because before I was internalizing it and thinking they had power over me. I would try to create situations to minimize the stress, but that’s impossible no matter what. Now I just recognize where the behavior is coming from and actually brush it aside, rather than keeping a hold of it.
There is a lot more work I’ve done to minimize the stress, but the major revelation is that I don’t need to worry about things I cannot control and not to be bother by how other people treat me. I can’t control anything, so why should I try and get stressed over it? If someone has a chip on their shoulder about me, well, that’s their problem.
I’m not perfect about it, but I find that I dwell on it less and less.
I recently had the potential of being in a situation where I would experience an MS flare-up due to personal stress.
And guess what? No flare-up. No hint of a flare-up. Nothing. I feel amazing that I have found a way to help deal with a major risk factor towards my health that isn’t just diet related. What this means is when I get back on my drug regimen I will be in the best possible place to successfully manage my MS.
And if I do get a flare-up? I will know it wasn’t my fault and that I couldn’t control it. And then I will move forward.
Disclaimer: I am not a medical professional and none of these statements have been reviewed by one. What is my personal experience and observations may not be the same for another individual.