Speechless

Not too many things make me speechless, but a quick look at Twitter this morning did that.

I came upon the post below about the role of sensory overload and pain. Specifically, Fibromalga and related pain diseases as written by another blogger, Chronic Mom.

In multiple studies completed by National Institute of Health and the University of Michigan sensory overload can be directly linked to increased pain levels in patients with Fybromalgia and other pain disorders. This blew my mind. Imagine having a hunch about something happening in your own body, but never quite having the proof? Well, here it is, for me, spelled out nice and clear- and very relatable.

I have a traumatic brain injury. With that comes a high sensitivity to all sensory events- sight, smell, sound, touch, and sometimes taste. I also have Fibromyalgia, Allodynia, Rheumatoid Arthritis, and Chronic Migraine- all diagnosis’s that came after the accident that caused my brain injury. Sometimes, it felt like every year, I was adding on a diagnosis, and I felt, deep in my bones, that the root of it all was my TBI. Well, to me, this is the proof I have been waiting for to explain all of these comorbid issues.

To put it simply, because of my TBI, my brain works harder than the typical brain. Something that other’s take for granted, such as attending their child’s soccer game, or grocery shopping can cause me to need to rest in a quiet room for hours after. And sometimes, I have pain flairs that make my entire body throb, and make even the slightest touch on my skin ‘burn.’ Recently, I had a flair which caused me to not be able to walk on my left foot for almost a week. My inflammation and resulting pain was excruciating- and mysterious. I have always thought that these ‘flairs’ have been caused by my over-doing it. Now, I have proof. My words could never do justice to how validated I feel right now. Living with an invisible injury can feel like a constant challenge to ‘prove’ my symptoms, sometimes even to friends.

Timothy Keller, a christian author, wrote “To be loved but not known is comforting but superficial. To be known and not loved is our greatest fear. But to be fully known and truly loved is, well, a lot like being loved by God.”

While I do feel truly known and loved by my husband, I know that it is difficult for those that may know me in a more casual setting to fully understand my life. I hope that these studies and this post, does more to explain what life inside my body is like. If it helps me to be more known to myself, it can certainly enlighten someone else. Many, many thanks to Chronic Mom for this insight.

In addition:

A recent podcast from Pantsuit Politics (which I love) talks about Five Things to Know About The American Disabilities Act. It discusses the exhaustion that disabled people feel around having to prove injuries and deficiencies which made me feel strangely understood. I encourage everyone to check out this, and all of Beth and Sarah’s episodes.

Be well. Wear a mask.