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My Experience of Trusting My Body with Neurological Conditions- By Hannah Frost

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I have two neurological conditions. Functional Neurological Disorder, a condition that means my brain doesn’t always connect to my body and Chronic Migraine.

These conditions have resulted in an interesting relationship with my body when it comes to trust. Sometimes I find I trust my body too much. I’m overconfident because I forget my disabilities and how they may affect me. I’ll think I can walk on uneven terrain without falling, go for a run without falling, and do exercises that were easy for me a few years ago. This is especially the case when I experience a rapid change in my level of disability, which has happened with both my FND and my Chronic Migraine. However, I also experience the opposite when it comes to trust. I’ll trust my body less and feel anxious about going to new places. What if it’s too busy and I get dizzy and disoriented? What if I fall in public? Even worse, what if I start convulsing and having what are potentially non-epileptic seizures when people are around?

I have memories of that time I was working at a summer school. I was walking back from dinner and got overwhelmed by dizziness, and ended up on the floor barely conscious and convulsing periodically. When I have these episodes I can hear what is going on around me but I can’t respond or control my movements. I remember hearing my manager who was on the phone with 111 at the time saying I was seizing. I remember how many people were around me. I remember not liking that all of the attention was on me. I remember being unable to do anything about the fact that I was on this car park floor. I remember ultimately having to leave that albeit temporary job because of what happened and concerns over my health. I now worry about that happening again so much so that I use all my energy to stay upright when I’m out, often only to literally collapse once I’m in the safety of my bedroom.

Ultimately, I don’t trust my body to not betray me in public. As my conditions often fluctuate, my lack of trust here means that in periods when I have been doing better and I can comfortably walk around town, explore a new area or go to the gym, I would often still get anxious about this until I was a couple of months into getting better. Often for my body to then deteriorate again not long after. I would finally get to the point of trusting my body and it would then tear my function away from me again, pretty much overnight.

Understandably to regain trust and often lose it, and to over trust and not be able to do something can be discouraging. It can be scary and it can lead to feeling like you are walking on eggshells, never knowing what to do, or where to spend your energy. It can lead to overthinking everything. This experience has also taught me not to get my hopes up. If I have a good couple of days or weeks I am always wondering when it will come to an end, knowing it is likely to be sooner rather than later.

Instead of feeling worried and anxious, I should really be enjoying these days. But the reality is that is easier said than done.

Despite all the difficulties with trust, I have found some ways to regain a little bit of trust in my body. I’ve had to learn what muscles I need to activate to stay upright if the bus driver zooms off before I sit down. Sometimes they even do this when I have my crutches. Along similar lines, I’ve had to learn what muscles I need to activate when standing on the London Underground so I don’t cause human dominoes. This has made me feel like I am taking back some control. I feel most at ease when I can do something proactive to improve my function or my symptoms so being able to take back control is key to helping me trust my body that little bit more than I would otherwise.

When it comes to my Chronic Migraine, taking back control and doing what I can to improve the situation has also helped me have more trust in my body. Knowing that I have a toolkit of things I can use to help reduce symptom severity is a comfort to me.

The bottom line is that when your symptoms make things that were once easy, difficult or impossible, or cause you to not be in full control of your body, it is difficult. It is natural to lose trust in your body, to either over or underestimate your body's capability, or maybe like me do a little bit of both. But despite this, you can do things that help you find that little bit of trust. Be it taking back some control, which helps me or something else that works for you!

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