Living with Myalgic Encephalomyelitis

A lot of people wont have heard of M.E or wont know what it is. So lets break down what it actually is.

Myalgic Encephalomyelitis

  • Myalgic – Muscle pain
  • Encephalo– Relating to the brain
  • Myel – Relating to the spinal chord
  • Itis – Inflammation
  • Myalgic Encephalomyelitis – Brain and spinal chord inflammation with associated muscle pain.

10353636_671005269693201_9143878772167582049_n

I first started having symptoms at the age of 14/15 although I didn’t know that at the time. I’ve always had quite a low immune system but I remember this one occasion where I was so ill I was off school for about three weeks. After this sickness I noticed I was becoming persistently tired and finding it hard to stay awake; it got to the point where I was getting home from school, attempting to do all my coursework and would end up crashing out on the sofa. I was already under the hospital for joint pains so they decided (after a lot of pressure) to investigate. I remember the date clearly, the 12th December 2012 I received a letter telling me I had M.E from undiagnosed Glandular Fever that my previous doctors surgery had neglected to tell me and my mum.  It would’ve never been a convenient time to get this chronic condition but it happened to be my GCSE year so it really was tough. None of the teachers understood; I was kicked out of GCSE Art, was constantly harassed about my attendance and on top of that, people who were meant to be my best friends made out I was ‘lying’ and ‘pretending’ for attention. I think that’s one of the hardest things about this chronic illness, people thinking you’re lazy, people not believing you.

IMG_5763

After I finished secondary school I crashed over the summer and wasn’t able to do much. For this reason I decided not to go to Fashion College and went to a near by  FE College. The pattern repeated itself; the students were nasty there and the tutors didn’t get it. I got no extra support or extended deadlines and I got kicked off the course. Being constantly knocked down and not having anyone believe in you is hard especially when you know you have the passion and drive to achieve but you’re too ill too. Not wanting to be defeated, I contacted the fashion college and managed to get a place for September 2014. Unfortunately, they also despite making out they understood my condition made my life HELL! Constant meetings with my mum and teachers and them telling me I treated the course like it was a ‘long distance course’. All while this was going on I was under a well-known teaching hospital in Central London who were also trying to dampen my dreams by telling me to quit. In the end, the M.E got the better of be and i departed the course two terms early but managed to still get a Double Distinction.

images

What’s life like now having M.E? Well its still a nightmare. I tried joining some forums but all they do is complain and whoa is me; I can’t deal with that sort of negativity and would rather uplift people and post positive stuff but that gets shut down. I’ve lost countless amounts of friends (fuck all of you) who couldn’t be bothered to stick around or be supportive. Once you can’t go out all the time, and drink copious amounts of alcohol and take illegal substances you aren’t ‘cool’ enough to be their friend. In terms of hospital, I’m an adult now so I got moved to a different hospital but they’re still rubbish. My main consultant is pointless and doesn’t do anything, the physiotherapist has some sort of vendetta against me, the nutritionist wasn’t interested, the only one cared was my Occupational Therapist (shoutout Mary you’re a real one). So really I’m just left to get on with it by myself.

ME-CFS

My advice for anyone who has been newly diagnosed or just wants some advice:

  • Never ever give up, still try and follow your dreams
  • Cut negative people who drain your energy out of your life
  • Don’t just keep someone who doesn’t care or insults your illness just because you don’t want to be lonely
  • Pick carefully when choosing jobs, universities or colleges. Make sure they will definitely give you support.
  • Do loads of research online; the doctors don’t tell you much. As they say knowledge is power
  • Look for any treatments or holistic remedies that may help (the hospitals rarely give you anything)
  • Cut down your carb intake, it contributes to the tiredness
  • PACE YOURSELF, DON’T OVERWORK YOURSELF, you will crash
  • Make sure you spend some time  outside each day
  • Find a hobby (mines photography)

Obviously, every persons severity is different but I just wanted to share my experience and I hope some of my tips help someone out there.

2014-07-31-16.27.53

By Destiny Crawford-Corri

https://www.facebook.com/destinykcorri

https://www.instagram.com/unknownentityxo/

https://twitter.com/unknownentityxo

https://www.flickr.com/people/155922822@N07/

2 Comments

  1. Some excellent & personal thoughts expressed. Thanks.
    One niggling question – aren’t blue ribbons for the non-diagnosis of CFS while grey ribbons are for ME?
    The Hummingbird Foundation uses grey.

Leave a Reply