MS symptoms are weird. There’s no rhyme or reason to them – how they manifest, how long they’ll stay. It’s day to day – hour to hour – minute to minute. It really can and does change that fast. I’ve woken up in the morning and felt great, and by the time I’ve gotten to the bottom of the steps been in excruciating pain with weakness and could only make it the sofa. I’ve woken up in the morning with that familiar ache, the all over pain that is most often felt the morning after a shot. I’ve had my vision double, Bell’s Palsy, slurred speech, incredible “cog fog” (cognitive deficiencies) and blinding “lightning shots” of pain from one side of body to the other. I’ve actually gone 10 days without a single symptom. WEIRD! It sure makes you flexible though – and able to leap tall problems in a single bound!
I’ve had a weird symptom lately. It started 4 months ago with a twitch, just under my left eye. It was bothersome, but no big deal, really. After about 3 months, it started to involve that side of my face and my neck. It pulled up so hard one night, in fact, it woke me up. I felt like the Joker from the Batman movie with only one side of my mouth in a scary smile! This, I’ve now come to understand, is called “Hemifacial Spasm”. Hemi – meaning 1/2 (as in hemisphere) and obviously facial meaning regarding the face. Spasm – that’s right – twitching or tightening of the muscles. It’s really about the nerves though. Whatever! It’s description and biomechanical function isn’t the thrust of this post. It’s just that it’s WEIRD! Just yesterday, I started hearing sounds in my left ear, that correspond with the spasm. It’s like faraway fireworks set to “dance” along with the music. I’m lucky enough to get to chat with people all over the world these days, through this FUMSnow.com website, the FUMS Facebook page and the FUMS Twitter account. I’ve heard some WEIRD symptoms – and received an inordinate amount of understanding and support for my WEIRD symptoms. It’s a great use of the various mediums. I’d like to continue that practice: let’s share our WEIRD symptoms and any tips and tricks that we may “stumble upon” (sorry, MS’ers, couldn’t resist). For instance, when I mentioned the Hemifacial Spasm, a TON of people responded saying they had the same thing, but didn’t have a name for it. Several people suggested various massage techniques that I could try on myself and one kind soul told me of her success with drinking quinine in tonic water. I’ll just add a little gin to that and probably feel quite a bit better myself!!
So please, let’s hear your WEIRD symptoms and how you’ve dealt with them. You could make a difference in someone’s life. MS gives us lots of challenges – now it can give us an opportunity – to help others – too!
MY BEST TIP: Talk to your disease everyday – so it knows who’s boss. Tell it: FUMS!
I must confess, it helps the stress, to say, today, FUMS!!