The Jagged Edges of My Altered Reality

Beth Ullah avatar

by Beth Ullah |

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“You know that place between sleep and awake, that place where you still remember dreaming?” — James Matthew Barrie

Being diagnosed with relapsing-remitting multiple sclerosis significantly changed my perception of myself and the surrounding world. This drastic shift has been overwhelming and difficult to accept in many ways.

The pain of proprioception

Proprioception is basically the body’s ability to be physically self-aware. It allows us to sense where a part of our body is in space without using vision.

When I was undergoing diagnostic tests, the neurologist asked me to stand with my eyes closed. The next thing I knew, she was catching me to prevent me from falling. This was one of my most shocking symptoms, as I genuinely wasn’t aware that my balance was impaired. I racked my brain trying to determine when this change had happened and why I hadn’t noticed it.

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I realized that it had happened so slowly and subtly that I’d been subconsciously compensating for it. Some things, like wearing gradually shorter heels, had taken place over several years. More recently, I’d started doing other things, like holding the wall in the shower for support.

Shortly after that neurology appointment, I was sitting in a restaurant where my sister was a waitress. As I watched her swiftly lope down a flight of stairs with a plate of food in each hand, it dawned on me that I couldn’t remember the last time I ran, or even walked, down a flight of stairs without holding on to the banister like a life jacket.

Once the shock dissipated, this awareness enabled me to better manage daily tasks. I obtained a shower chair so I wouldn’t fall in the shower, and had a stair rail fitted across from the banister so I had something to grip on both sides.

While I wouldn’t call it a walk in the park, these have been some of the easier accommodations to make. That said, sometimes it’s distressing when I wake up and can’t sense where my body is. In those moments, it feels like I’m a floating head without a body.

A shift in my perception of time

It was much harder to navigate the shift in my perception of the intangible. One striking change was my altered experience of time. I seem to have lost the ability to sense time in the way I once did.

I think this is partly the result of fatigue impairing my ability to process information. It helps to write things down and use my calendar to within an inch of its life, but it’s not that simple.

I need to check in constantly to ensure I understand what things mean, as I can no longer read between the lines. Maintaining this level of awareness is exhausting, and it feeds into the never-ending cycle of fatigue.

For example, toward the end of last November, I was aware that Christmas was on the horizon, but it wasn’t until my father mentioned that it was four weeks away that I perceived just how close it actually was. To me, it felt months away.

Then, last week, I was speaking with my sister about our Friday plans, and she informed me that Friday was, in fact, the next day. I thought it was Wednesday. An entire day had vanished in my mind. I was mostly shocked that I hadn’t even realized that I’d lost a day.

It’s a huge adjustment to see myself in what appears to be a cracked mirror. The woman looking back at me isn’t whom I perceive myself to be. The jagged edges of the glass reflect my disjointed sense of reality, time, and self.

But as Jon Bon Jovi said, “I’m halfway there.” Coping with these changes is a work in progress, but I am slowly making a home for myself in this new world with MS.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Denise Morley avatar

Denise Morley

Hi I know exactly how you feel after going to the doctors many times and being told I had a virus I decided to see a different doctor in the surgery and explained the things I had told the other doctor and all he done was told me what you had been told to do and I to fell backwards so he sent me to a neurologist where I was diagnosed with relapsing remitting Ms after different test were done and I to experience every thing you have written my work in progress has been going on since 1987.

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Pete Bergin avatar

Pete Bergin

When I first got diagnosed with MS, I used to wake up forgetting that I was in trouble. After that, in my dreams, I used to run, workout and do all the things I did when I was healthy. After that, I used to dream that I couldn't walk at all and was screwed. Now I am just grateful for all those who have helped me. Life is short...give back. Pete.

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Yvonne Ashman avatar

Yvonne Ashman

So very true...Never quite 'there', never quite 'in the moment'...It is like living in a constant dream state where reality and fantasy can be strangely entwined. Perceptions change, move, alter in a continuous eddy of time and place where you never quite reach that goal or vision. Thank you for posting this. It makes sense now. I am not going insane...

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Beth Ullah avatar

Beth Ullah

This is perfectly phrased. Thank you. Yes, it's exactly how it feels!

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marie kelfer avatar

marie kelfer

this really resonated with me!

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Jen avatar

Jen

Covid has interfered with my perception of time. Many usual weekly markers aren't happening, so I quite often forget what day it is. Most days feel like Sunday. Many of my non-MS friends report the same. I'm not dissing your experience, but be aware that this may improve again once the Covid situation improves.

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