MSers are often called ‘MS Sufferers’. We are on a ‘Journey’ and are encouraged to ‘Beat MS’; don’t forget, ‘You May Have MS, But MS Doesn’t Have You’ blah blah blah. Yes, having MS is horrible, yes it sucks… but, can it not also be totally fascinating and funky and weird? Sometimes I find myself in total awe of the more bizarre symptoms; the ones that cause mild discomfort and are more of an irritant than the other more menacing ones. I’ve been known to start chuckling to myself because of some craziness going on inside my body.
This week, for example, I keep thinking that I have water trickling down my left ankle. It’s not wet, I’ve checked many times, in fact I check every time it happens. I was beginning to think I was going mad so I got my husband to check too – there’s nothing there; just a random sprinkle of neuropathic pain, or ‘dysesthesia’ to use the proper term. It’s a stupid and pointless symptom. Along similar lines I often experience a tingling tightness in my thighs; it feels like a phone vibrating in my pocket. Again, I always check to see if it’s my phone, even if I don’t have a pocket or I am holding my phone in my hand! Stupid crazy-ass neuro-pathey-wotsit.
And what’s with colour flashes, anyone else get these? A coloured filter, sometimes green sometimes red, will fall across my eyes causing intermittent flashing. This usually happens if I am particularly tired or if I overheat. In the months leading up to my diagnosis I was convinced my bathroom was fitted with cool disco lights, turns out I was just having very hot baths. And how about L’Hermitte’s Phenomenon? – When you bow your head an electric pulse shoots right through your body. This is surely one of the funkiest symptoms and is a sign of inflammation on the spinal cord. Again, it’s not all that painful, some may even considerate it fun, but it sure is mighty strange.
Numbness is another good one. Like everyone else attending the MS party I get a lot of numbness around my body – my feet haven’t actually been awake since January 2010. Numbness sounds painless, but it isn’t. I may class it as a weird symptom here but wonderful it is not. It is jolly uncomfortable, disorientating and annoying. Try operating car pedals with numb feet, or navigating an uneven path, or walking in flip flops (don’t even go there!). Try picking up LEGO bricks with numb fingertips, or doing up buttons, or using a pen. Stupid dumb numb.
There’s so much more on offer in the weird and wonderful world of MS, but you’ll have to excuse me – I just need to go and loosen the strap on this invisible watch that appears to be done up too tightly around my wrist …