Nuthins Changed

So when I first became a recluse it wasn’t through choice, it was thrust upon me, I never accepted it..i couldn’t, I wouldn’t, I had a life after all.

It may not have been anything special to most but it was my life and I was enjoying all the ups and downs of it, working in newsagents by the age of 13 and being given the keys to manage it at 17 often drove me nuts, on the plus side it was literally three minutes from my front door, oh the times I woke up with only ten minutes to spare and suddenly had to do a mad dash to make the  bed, get clothes on and run lol!

On the downside a 5am start was a killer for one so young, sometimes I hadn’t even been to bed. I had to drag all the newspapers in off the front doorstep and set them up ready for all the paper boys and get the shop ready for opening at  6am. I rarely   became human until at least 10am. Like lots of other working people I’d moan I wished I could  be back at home snuggled up in bed, or working on my music, I’d moan that I was wasted in a sweetshop, and worry I’d still be serving up bags of sherbert lemons when I was a pensioner. 

It was just the normal  rants that we all have with our jobs, but there was something I loved about it too, the responsibility, the customers (most of the time). We lived In  a community so I saw the same faces everyday, we’d chat, laugh, they became friends, young, old, I’d be serving generations of families, they’d tell me their secrets, ask for help, invite me to tea. It was more than just a newsagents… this was a part of my life.

I had my own money , ok so the wages were terrible, but I’d earnt them, they were mine and I was part of a group, a club, I didn’t realise I was until I lost that job, just as I went on to lose my social life and everything else when I became ill with M.E.

If dealing with an illness that hits with 101 different symptoms wasn’t overwhelming enough, I was suddenly hit with the reality that I was deemed part of the benefit scroungers brigade, it didn’t matter why, or whether I’d had a choice, I no longer worked and that seemed to provoke an instant disrespect, I was no longer worthy.

There were family members I no longer recognised , my family, my blood, my safety net, who immediately changed, backed off, made crass comments about how they weren’t sure if M.E was a physical illness or a psychological one and a  host of other comments, the same hurtful ignorant crass comments I faced from strangers and medical professionals……and now my own family? Friends gradually slipped away too, but at least some were honest enough to admit they couldn’t handle seeing this once strong female falling apart and no longer able to come out to play, drink, party, have fun, just as I didn’t recognise them, they no longer recognised me.

I had to revert back to a child, my mum bringing me sweet tea and painkillers and sitting on my bed at 3 o’clock in the morning rubbing my legs to try and ease the excruciating pain while all I could do is cry, and she’d tell me everything was gonna be alright and it was just a glitch. I longed to have something simple, something that just needed her to administer a plaster, kiss me better and send me on my way, despite the fact I was an adult. But this was M.E not even a mum had the power to make it better.

I’ve spent half my life feeling like a leper, I learnt to cushion myself from people and places, its hard to go far with M.E anyway, but avoiding people and becoming a recluse makes for an easier life and I’ve grown to accept it and love it….dont get me wrong, I still pop my head out the tortoise shell occasionally, but its places of my choosing, I choose what to accept and what not to accept. 

If I receive an invitation to somewhere that I know is going to be a comfortable environment then I’ll go if well enough, but I avoid people and places that are likely to be  hostile and toxic and that includes family environments too.   I’m not going to spend the rest of my life  explaining and justifying, although I will continue to campaign for better awareness, the two are very different situations.

Recently due to my latest health crisis I’ve reluctantly been thrust back kicking and screaming into society and I have to say nuthins changed, absolutely nuthin, from medical professionals to taxi drivers, to joe public and every other bugger I’ve had to come into contact with, when it comes to M.E  ignorance is ever rife.

“ Aint that yuppie flu from tha 80’s?”  

“M.E? yeah yeah yeah but have you got an illness?”  

“So apart from M.E you’re a fit, well, healthy person?”

“What’s that then?   Never heard of it”

“Do you think it might just be stress?”

“Do pou mean M.S?”

Nuthins changed, that’s why I left AFME, words but very little action in the end, things should have happened by now, we shouldn’t still be living with such ignorance intolerance an cruelty in 2012. I will continue to fight and campaign and use any music platform I can  to direct a spotlight on this hideous illness. I do believe there are many individuals out there who have, and are, making more of an impact than any of these charities set up in our name. I also  believe that there will be change eventually , but its shameful and almost unforgivable that it hasn’t come yet and many lives have been lost.  

I didn’t choose to be a recluse, but until society can accept me with an illness I had no invitation too, and not judge and make crass comments and make life harder than it already is then I’ll continue to accept reclusiveness  and embrace it, because it cushions me and allows me to concentrate on the things that really matter and that’s campaigning via laptop and music to make a change…and I’m sure you’ll all agree it cant come soon enough.

                Stay strong, stay blessed J xxx