Explaining what MS feels like: Words don’t mean what they used to

This post was re-published by elephant journal as Putting it into words: What it feels like to have MS on 9 February 2015.

Explaining an invisible disease

MS is called the ‘invisible disease’ for a reason. Most of the symptoms – many of them debilitating for a period of time – are felt rather than seen.

It is possible for me to look the glowing picture of health while feeling disconnected from my body and quietly wondering how socially acceptable it would be for me to lay down on the footpath and sleep.

I’ve blogged before about the Seeing MS Campaign – an attempt to depict MS symptoms visually.

I thought I would try with words, as I realise the words I use to describe how I feel no longer mean what they used to.

Describing MS symptoms

So, here we are: my new definitions for what I am feeling.

Any and all of these can happen simultaneously, with no forewarning. Any and all may last for days, or be gone in minutes. All are the result of one half of my body attacking another. And damn, it is tiring.

  • Hot: You know that feeling when you have exerted yourself (say after going for a jog or to the gym) and you need a few minutes to cool down? Well, for me that feeling can occur at anytime, even sitting on the couch (and god forbid I go anywhere near a hot bath). My body either fluctuates temperature wildly (to the point where I give off heat discernible to those around me) or my body simply shuts down and I sleep (or pass out).
  • Cold: My senses lie to me, and I sometimes feel cold internally… It is like iced water being poured down the inside of my skin. This can occur all over my body or just in whatever limb happens to be playing up at the time. It has nothing to do with the temperature, I may very well be sitting in front of a heater.
  • Tingling: This feels like an electrified feather tickling the inside of my skin. This is the least painful but most irritating sensation… I tend to find myself wringing my hands or rubbing the part of the body in question hoping to massage the feeling away.
  • Pins and needles: Imagine a standard case of pins and needles in your foot or hand, and then ramp up the intensity over a larger section of your body. And then consider the fact that the feeling is likely to get worse and may not abate for hours or days. It is maddening.
  • Numbness: To be honest, this is the most disturbing sensation. It feels like when you hit your funny bone and immediately grab it, waiting for the simultaneous pain and numbness. But that lasts for a few seconds or maybe a minute. This numbness can last for days, spreading throughout the body. Also maddening.
  • l’Hermittes Sign: My best friend though I was having a fit the first time I experienced this, as I was so shocked I kept bending my neck down to see if it would happen again. Basically, when I get hot or fatigued and I bend my neck down, a spasm of (what feels like) electricity shoots down my spine. The more hot or fatigued I am, the more violent this is (sometimes shooting all the way to my toes and fingertips).
  • Fatigue: There are no words for real fatigue. A good nights sleep means nothing. A week resting in bed means nothing. Suffice to say that lying down and quietly dying sometimes feels a legitimate wish.
  • Disorientation: This is the most dangerous, and I suppose it is more of a cognitive symptom than a sensory one. It only happens when I am already fatigued. Simply put, crossing the road or walking through a shopping centre becomes intimidating and to be honest, a little scary.

If anyone with MS has other descriptions, do share.

6 comments

  1. You’ve hit nails on heads here. “There are no words for real fatigue. A good nights sleep means nothing. A week resting in bed means nothing.” Heh heh, so true. People ask ‘Why are you so busy?’ I say ‘Because resting doesn’t help.’ 🙂

    Thank you, thank you, thanks you for putting these intangible things into words, and doing it so well.

    Liked by 1 person

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