Tha problem with M.E apart from having to cope with enough symptoms to fill an encyclopaedia with is it means you have no life, so if you have no life other than M.E what are you expected to talk about?
When I’m not recovering from major surgery I do have a little bit of a life that I’ve carved out for myself but that’s taken a long time and takes discipline and determination to carry out because it doesn’t stop my day being consumed by M.E. and everyone copes differently.
For those of you that don’t have M.E let me explain, imagine a time when you’ve had raging toothache, you know tha kind, where it feels like your whole heads pulsating and throbbing with pain? now imagine painkillers don’t work, theres nuthin tha dentist can do so you’re just gonna have to get on with it, live like that everyday probably for tha rest of your life……..now throw flu and a hangover into tha mix and everyone expects you to carry on as normal?…I’m just giving you a little taste of what M.E’S like to live with by tha way.
Anyhow its frickin hard to do anything let alone talk or even talk about anything other than how awful we feel huh? , well welcome to our world, we cant escape it, not even for a short while.
I wish I had wonderful conversations to entertain you with, holidays to far away places, shopping trips to London, clubbing half tha night, rolling in inebriated at 3am and then recalling the stories of beer goggle faux pas, and trying to climb traffic lights on tha way home, I’d love to tell you about my working day, what happened on a girls night out, the course I’m taking to become somebody or other but I cant because I have M.E, M.E is my life …oh I can try and pretend of course and I do, it’s called distraction, it doesn’t work for everyone and it doesn’t stop tha M.E and it doesn’t stop you feeling so damn ill and it took me 12 years before I was able to distract for very short periods by writing or making music, but I’m aware I’m distracting myself so that I’m not totally utterly and completely consumed by M.E. but distraction is just as much of a battle as battling tha illness itself.
Every moment of life is ruled by this illness because I cant do anything without planning, a lot of us cant stand around waiting for public transport so we have to use taxis and a journey maybe too expensive, we have to make sure tha journey isn’t too long or too far because even travelling makes our condition worse and drains us of energy , we have to make sure that when we get to wherever we’re going there will be somewhere for us to sit down or lie down if needed, that it wont be too crowded,and we also need a toilet as bladder and bowel weakness can also be one of tha numerous symptom….. but on tha other hand we cant really plan anything because even if all tha above are in place we don’t know from one moment to another what level of tha illness we’re gonna be, I can go from relatively fine to bedbound within 20 minutes.
I know it bores people, I know they get fed up with hearing it, and on a few occasions I’ve had people say “Do you realise your whole conversation is about illness ? or why don’t you try and talk about something else? Or you really need to try and find another topic , its not good for you talking about it all tha time…….the problem is this IS my life, I know its boring….you’re fed up? Think about having no choice but to frickin live it everyday, I get more than bored & fed up I get frickin angry and frustrated i even wish i'd shut up sometimes but I have no choice this is it, I cant even talk about tha price of fish…I’m a vegetarian lol! So yes I probably talk about M.E everyday…every single damn day because that IS my day, this IS my life and will be for tha foreseeable future.
All I can ask is that you try and understand, that you forgive my constant ramblings and rants, but know that its just frustration at not being like you, being able to have tha freedom you have to choose how your day is and what you do with it and what you talk about, that you know within your heart I would love to have conversations about other things, if I could do other things and despite everything that I still have hope that one day I will be able to…and we’ll talk about tha cure they’ve found that’s enabled me and tha thousands of other M.E sufferers to get their lives back, and I wont ever have to talk about M.E again…but until then forgive me, and I’ll try my best at finding things to distract however brief….…Now wheres that packet of custard creams?