Life Update: I’ve Never Felt More Trapped In My Own Body

As someone who has suffered with panic disorder for over a decade, I’m very familiar with the unsettling feeling of being trapped inside your own body.

When I’m having a panic attack, I’m fully aware of what is happening. It is not an out-of-body experience. In fact, it’s quite the opposite. I’d much prefer to be anywhere but in my body when panic sets in and I know I’m in for the crashing-plane-feeling of a panic attack.

It’s that exact feeling that has been hanging out in the back of my mind as I’ve slowly started compiling symptoms that I’ve had for years.

It all came to a head at the end of September when I had what I thought was an ocular migraine. I don’t usually get migraines often. Headaches? Yeah, all the time. But migraines are few and far between.

Then, that last Friday in September came and I had the weirdest migraine I’d ever had. Suddenly my vision was skewed, as if I’d looked up and the sun and back down, but couldn’t clear the dark blobs in my vision. Luckily, I’ve heard about ocular migraines before, so I took some medicine and quickly left work before it got worse.

And it definitely got worse.

And since then it’s as if that migraine barely left.

The entire next week I had light sensitivity and headaches. My vision returned to normal, but my eyes were even hurting.

I went to a walk-in clinic who prescribed me migraine medicine, but told me I probably shouldn’t be at work when I take it because of my side effects (so, I didn’t take it).

I went to an ophthalmologist the next day, who told me that my eyes looked healthy, but she started asking me odd questions about my medical history.

Your hand has been tingly and slightly numb for two years? Tell me more about that.
Is it in only one eye that you have the pain?
Have you noticed any discoloration in your vision in that eye?
Has your vision decreased in that eye? Or become dimmer?

Ultimately, though my eyes looked healthy on her end, she insisted I see a neurologist. I took the card for the neurologist she recommended, and went on my way.

Her leading questions, though, stuck with me and I did the unthinkable… I took to Google.

And that’s when I came across Optic Neuritis.

“Optic neuritis is an inflammation that damages the optic nerve, a bundle of nerve fibers that transmits visual information from your eye to your brain. Pain and temporary vision loss in one eye are common symptoms of optic neuritis.”

Optic neuritis had a lot of the same symptoms that I was having, minus the vision changes. This was the only thing I could find that listed symptoms I was having and as I was researching it further, I came across something even more unsettling… Optic Neuritis is often a sign of Multiple Sclerosis.

Of course, I started digging into MS and that’s when things got scary. My tingling hand, that time my entire left side went numb and tingly, the ice pick headaches I was having a few months ago, frequent UTIs… these are all symptoms of MS.

I stopped researching MS altogether when things started getting scary. I didn’t want to scare myself without knowing for sure, but I also wanted to find out some answers. So, I did a little research and found a neurologist about an hour away from where I live who specialises in MS.

Here’s the thing, MS is really hard to diagnose. Doctors have to cancel out every other option before they can determine it is MS, so I wanted to go to a neurologist who knew exactly what to look for.

Of course, this was the beginning of October and I couldn’t get an appointment until November 11.

Ok, I thought, well, I can deal with the eye pain and migraines until then.

But then, the following Wednesday, my vision started to change.

It’s hard to describe, but it is as if there was a gray screen in front of my right eye. I was seeing flashes of lights in only that eye.

After I went to Shameless Book Con in mid-October, I ended up in the ER.

My vision had changed pretty significantly within a week and a half and it was pretty scary.

I decided to go to the ER at the hospital that the MD neurologist was associated with so that my records would be available to him for my upcoming appointment.

I was pretty relaxed going in, I purposely went at a time when I didn’t think it would be busy and I fully understood that they would likely admit me and do all sorts of testing. Despite my tendency to be anxious, I wasn’t really in this situation. Surprisingly, hospitals and doctors don’t really bother me at all.

That is… until they put some medicine in my IV that I still am not sure what it was. They told me it was for my headache, but I have a feeling it was some sort of steroid.

I was fine as they put in my IV (despite some difficulty), when they took blood, and even when I got a CT scan, but about 20 minutes after they administered the IV medication, I started feeling my skin crawling and a desperate feeling that I needed to get the hell out of that hospital.

It didn’t feel like my normal panic attacks, it felt like it was right under my skin. I began shaking, my heart rate spiked, and when the ER doctor (who was abosolutely lovely, by the way) told me she wanted to admit me and possibly keep me overnight for more testing and to see the neurologist and ophthalmologist, I couldn’t say yes. I had to leave.

And I did. I ended up leaving against medical advice.

With a “normal” panic attack, just signing the discharge papers would’ve cured the anxiety, but because this was medically induced, that skin-crawling, I-need-to-escape feeling stuck with me the entire day. Even when I was in my pajamas in bed at home.

The ER doctor instructed me to try to get into my MS doctor’s office sooner and she also wanted me to see an ophthalmologist (again) and another neurologist. I consulted with the MS doctor and he added me to their cancelation list and told me to go ahead and see the ophthalmologist again, but not to worry about the neurologist.

So, I saw the ophthalmologist, who basically said the same thing as the first. After doing all sorts of tests, he told me that my eyes looked healthy in the areas that he could see, but he couldn’t cancel out Optic Neuritis or MS – I’d need an MRI for that.

The MS doctor ended up ordering me a MRI and a VEP, both of which I scheduled before my appointment with him.

And that’s where we leave off in this story. I had my MRI on Friday and I have my VEP test this coming Thursday.

And I’m feeling… I don’t know. Nervous? Sick of feeling headachy all the time? Sick of having trouble seeing out of my right eye? And, honestly? Slightly hopeless. Just a touch. Because even if I am official diagnosed with MS, there is no cure. You can somewhat treat the symptoms, but I just… I don’t know. It’s scary and it’s hard to even wrap my head around.

I want to be that person who is brave, who powers through and stays positive… and that’s typically how I am, but I can’t help spiraling sometimes.

If this is MS… suddenly the future is terrifying. What will it mean for my husband? For my kids? For my career? For my mental health?

I want to be positive. Not just for myself, but for my family and friends. I want to inspire people, not depress them…

But I’m just not there quite yet. My body feels like it’s failing me and I’m trapped inside of it.

For now, as I often do… I’ll employ the good old “fake it til you make it” state of mind. I’m great at plastering on a smile and going about my business, pretending that I am that positive person. The one who can find the light even in complete darkness. And maybe, eventually, I’ll actually become that person.

12 thoughts on “Life Update: I’ve Never Felt More Trapped In My Own Body

    1. Oh my goodness, that is so scary! I hope all is well, now. Medical stuff is terrifying and makes you feel so helpless. You never really appreciate it until you’re going through it, I think. Much love and thank you ❤

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  1. I’m sending you all the positive energy I can, and I will definitely keep you in my prayers.
    I’m so sorry you’re going through such a scary time. I wish you all the best ❤️

    Liked by 1 person

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