Shh, I have a secret

By Lauren Kovacs

Those secret symptoms wreak havoc and party hard in our body. They high five each other as they go to torture some part of us. I swear there is some kind of party in my left arm involving fire.

It is not a calm “kumbaya” bonfire. It is more like a concert with pyrotechnics and lava. Every night the burning visits me, like a ghost. It sneaks up on me. It lights my left arm on fire and laughs as it burns.

It is a secret symptom and never seen. Laying awake at night and breathing through it kind of sucks. Often times my husband can feel the heat radiate through my shirt. The lava has cooled off by then though. What he feels on the outside is nowhere near the fire pit. I should try making s’mores on my fire arm.

I tried some natural things, but ultimately I had to resort to medication. The burning would often bring me to tears. I have a high pain tolerance, but the burning in my arm on the MS stove nightly wore me down.

Altered sensations are a hidden thing. Invisible to others; however, they are real to us.  Many fellow mommies could not understand why I hated going to our community pool when my boys were young. A drop of pool water from an innocent splash was like a cigarette burn.

They grasped the heat thing only because they could see me wilting like a flower. They never knew I had become terrified of water, too. MS took my ability to swim. I now wear a life-vest.

I felt like I dove off the high dive right onto the decking. To go from being a great swimmer to being scared of three feet of water was no fun. It was worse because those things were hidden. Fear and pain are not usually a symptom you can see.

Most of us have invisible symptoms. There are many hidden symptoms. Personally, I try everything natural before I ask for medication. Ok, I won’t eat chicken feet or fish eyeballs as some weird remedy, but you catch my drift.

Like the invisible man, we know it is there. Maybe if these hidden symptoms wore sunglasses or a scarf people would get it. It tends to sneak up on us. Sadly MS often means many secrets.

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Janet Skocy says:

    It’s hard for people who’ve not been there to understand these symptoms. The pain that comes from a light as feather touch, the sensation of water on your skin to the point where you are checking to see if you’ve wet your pants, the sting of a slap on the face when you walk outside and feel the temperature change, creepy crawlies jolting you out of a deep sleep – lights on, blankets thrown, checking everywhere for the invisible bugs that are crawling on you.

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