You, M.E & Tweedledee (From Watford Observer)

You, M.E & Tweedledee

8:37am Friday 3rd April 2009

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By Stacy Hart »

Tweedledee & tweedledum? Laurel &hardy? Pinky & perky? That’s me & my mum, but which is which I’ll let you decide :) you see whenever you spot one of us the other is sure to be close by. Now as much as I love my mum, being a woman of a certain age I don’t always want to be accompanied but....the symptoms of M.E www.afme.org.uk have a habit of getting extremely bad very quickly, family members often know I’m going to be quite ill about twenty minutes before I feel it kick in because apparently I change colour. You’re probably having visions of a flashing multi-coloured disco ball here huh? Nope, Sorry, nothing so exciting, just a boring ashen grey. But at this point I’m still feeling okayish in an M.E sort of way so when they gently try to suggest we pack up and go home because I’m not looking too well I’m kinda “No, I’m fine, don’t know what ya on about” then about twenty minutes later BOOM!!!

Then the fun begins as the senses start breaking down, or brain overload as I call it, I become mega eye and ear sensitive and this is what it’s like: - take a look around...go on, I’ll wait. Your eyes are able to take in & separate every object around you yeah? Every colour, every detail, feels normal huh? Now imagine everything you can see suddenly coming in at about million miles per hour all at once...okay so the million miles per hour may be a slight exaggeration but you get what I’m saying? The brain can’t cope with everything pouring in so quickly and en masse. The same thing happens with hearing, instead of being able to separate all the noises around, it’s like having all of them in your ear turned up loud all at the same time, my brain suddenly gets jumbled and you feel like you’re going to black out, usually don’t, but end up dizzy and disorientated like being very very drunk, but not in a nice happy way & obviously not from choice. Now if id knocked back a few Courvoisiers to get in that state I wouldn’t mind so much but unfortunately it’s not the case. Then just to add some more fun into the mix, my words become slurred and jumbled too, because by now the brains having enough trouble trying to deal with the eye and ear thingy going on...oh and I stop being able to swallow, and also need to go for a wee (maybe too much info but hey, I’m a caring sharing kinda girl) see there’s many a fun day out to be had with M.E. It’s extremely hard to function in this mode and in the past on the odd occasion I went out by myself and became very poorly, I couldn’t make proper judgements, i.e. I got the traffic light signals mixed up and walked across when I should’ve stopped and would have been run over if the driver hadn’t slammed on his brakes and screeched to a halt, and yes it shook me up badly. There’s been quite a few near misses when crossing the road & I’m not totally safe indoors either and have burnt myself on the cooker many a time along with various other stoopid things.

So now on the occasions I go out mum comes with me, or I go with her, not sure which way it works lol! This way she knows what to do when I get bad, and guides me to safety.

Musically it’s been rather difficult because I’m still at an M.E level where very little is possible but I have spruced up Myspace page & stuck some more widgets on. There’s a little flashing button offering 3 free downloads when you sign up to be a fan, you don’t really have to be a fan but just for humouring me you get the latest track “flutterbye”, more w**ksta than gangsta the album version and f**k it the saga continues demo taken from the first album “Raw”. At the bottom of the page there’s also another player offering up some demos like “Weary bones” that are recorded in my bedroom where all the songs begin life. www.myspace.com/mamachill.

On a serious note (just for a minute) thanx to everyone who is taking time out to read the blogs, it’s very much appreciated and for those of you that didn’t really know what M.E was about I hope that in some small way as we travel over the weeks together it’s giving you a better understanding of this often overwhelming condition. For those of you that have M.E I hope it brings some comfort in knowing that your not alone and draw on the positives that if a Muppet like me can survive to carve out some kinda life no matter how limited then you can too. Bless ya. So remember if you see us Tweedledee & tweedledum feel free to come over & say hi, I’m sociable at the moment & hormonally sound thanx to daily chocolate fixes, although with a need to lose a couple of pounds that could all change very shortly but I’ll give plenty of warning. Some creative M.E pics up to view. Take it easy; see ya next Friday, back before Elvis :) xxx

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