Missing Millions – London 2018

Every year an event called Millions Missing takes place in Countries across the world to raise awareness of ME and to help make it visible. People with severe ME are often forgotten because we are hidden away in darkened rooms, too sick to leave the house. At the core of the demonstration is a collection of shoes. Each pair of shoes displayed represents one person who is ‘Missing’ from the world due to this debilitating illness.

I wasn’t well enough to attend an event myself but my sister and her husband went to the London Millions Missing event to represent me, and I am so thankful for this. My sister collected photos and stories from ME sufferers at the event. With their permission I am going to introduce a few of them to you.

Firstly, in the main photo, is my wonderful sister Rozy.


This is Lucy Grimwade. She wants proper research into ME. She has had ME since she was 12 years old. She misses school, friends, dancing with her sister and being normal.

Lucy wants more recognition from government and healthcare. #MillionsMissing London.


Jess wants to be believed.

This is Jenny.

Jessica wants more funding for research. I’m sure you all know the courageous Jessica who featured in the Jennifer Brea film Unrest Thank you for giving us a voice.


Grace wants to go to school and for people to not stare at her. Luke and Sarah want their daughter to be able to have friends over and have social interactions.

From the left Toby, Jacky, Emma, Lynn. Are supporters of people who live with ME. Lynn wants more government funding for research.

Vanessa and her mum Geraldine. Vanessa wants to be believed. Geraldine wants more funding and research so people can get better.

Jane and her husband Lawrence. Jane wants an end to GET and CBT. Lawrence wants to be able to do things together with his wife.


Carolyn wants to let people know about network M.E. self help (network MESH West London) to get support from like minded people and a newsletter.

Amanda and her partner Talay want more funding for medical research and practical support and improved disability benefits and a cultural change so that disabled people are not viewed as an economic burden but as individuals who can make a valuable contribution to society. And better education for health practitioners.

Ruth and her husband Ian want Biomedical research and they want it now.


From the left Tom, Liz and Chris are family members of someone who lives with ME. Liz wants to be heard and believed by doctors and school. And understanding.

Lea wants the medical profession to take it seriously and recognition that people die from ME.


This is Apolonia.


Steph wants more funding for research.


James wants to be able to work. There needs to be more knowledge and flexibility in the workplace. And recognition from government that it is a real illness.

Cato wants for research and funding for research and access to the right treatment.


Ollie wants more funding for research.


Thom and Rebecca don’t want to be silenced anymore.


This is Karen. Ill nearly 28 years. “I want a life back and I don’t want see anymore suicides or early deaths”

And lastly, a short video from the event. A big thank you to my sister and everyone else who attended all the #MillionsMissing events around the globe.

#ajourneythroughthefog #chronicillness #MECFS #MEaction#spoonies #chronicpain #meawarenessmonth #myalgicE #PwME#meawarenessweek #meawarenessday

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

https://www.facebook.com/ajourneythroughthefog/

Missing Millions – Global Virtual Meetup

For those of you, like myself, who are not well enough to attend one of the #millionsmissing events, there is a Global Virtual Meet up happening.

https://t.co/80uu2Nf9tf

#ajourneythroughthefog #chronicillness #mecfs #MEaction #spoonies#chronicpain #meawarenessmonth #myalgicE #pwme

https://my.meaction.net/events/millionsmissing-global-virtual-meetups-for-may-12

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

https://www.facebook.com/ajourneythroughthefog/

Guest Post : ‎Sefik Villasante‎ – My Story


My Story of overcoming the dark and desperate times is one that I hope can show others that there is a way out to the other side ! It was Sept 2016 and after 12 years of striving and seriously hard work and sacrifice I achieved a promotion within a huge U.S Multinational Company . I was ecstatic nothing was going to stop me I had the position the pay the title and the plaudits that I had richly deserved . Along with my family wife and children we could all share in my success!

9 months later I was a wreck ! 9 months of 17 / 18 hr days 5 days a week a culture that was far from supportive , toxic in nature , a work force hell bent on undermining you and your position had left me broken .

One of my main strengths was my confidence my ability to present and interact with the workforce and my passion and belief in the company and what it could bring to further my carrier and growth of the business .

I was left hiding on the ware house, wanting to hide away , keep quiet not be noticed and physically unable to even open up and email or log into my p.c . Every moment of my working day was miserable it was consuming me the fear of work the heaviness of failing the 10 cups of coffee a day to try and pep me up , the utter hate of the alarm going off at 04.30am and that drive into London it was desperate time.

I had noticed a definite down shift in my mood 2 months before I went to the G.P explained my situation and yep 150mg of Sertraline were was the answer . No No No pill could get me through this the work , culture and 18 hour days were relentless !!!

So driving home 9.00pm at night on a Friday I said I cant do this anymore H.R don’t care , manager doesn’t care , the company doesn’t care well then I will show them !!! Maybe this will make you listen and take notice !!!

I attempted to drive my car into the central reservation of the A40 , it made perfect sense I was exhausted I would blame the company show the world how I had been broken I was crying out for someone to take this seriously !!!! Something made me pull away at the last second .Was it luck , an angel , and hunch , or the last bit of reasoning I had in me that said you don’t have to do this ?? I pulled into the hard shoulder and had a cry and a talk to myself .

How could I tell my wife , my kids , work , my friends , family that I had failed !! Yes I had failed , failed failed failed failed !!! Everyone else but me opinion mattered but my own !!

Fast forward and after I sent an Email to my Boss explaining I couldn’t do this anymore , I felt a weight had been lifted . I myself had acknowledged I was in a bad desperate place and needed help .Never has watching a U Tube clip resonated so much . “The Black Dog Syndrome” Perfect in every way .

18 months of counciling , Self Compassion Groups , Mindfullness , Self Confidence Groups , CBT , Richmond Fellowship service , and a 6 month spell with a Physchatrist and of course understanding that medication is not taboo its a requirement for some .

I was under the impression a month away from work was all that I needed and I will me back to normal . I dosent work like that it takes time a lot of time and work and changing your values and your old way of thinking .

What really is important to you , what do you value , is money the answer to everything . What I’ve understood and this is key is that Money dosent bring you happiness it brings you choices .Success dosent make you Happy , Happy makes you Success !

Yes its been tough very tough for 18months I didn’t tell anyone I hid away pretended I was working from home, working nights on the lap top I was living a secret life . But as soon as I let my story out and told the world the support I had was amazing. It was like I was given a 2nd chance and new direction and new me ! Ive changed direction , had the confidence to leave a carrier of 14years start all over again at the age of 42 see my first sports day , xmas play go to a parents evening do the school run , tuck my children into bed sit around the dinner t able the list goes on and on .

Never live your fears don’t say you cant go on there is a way out i’ve done it . Suffering from chronic depression and anxiety is not taboo its reality and its a sign you’ve tried so hard, so hard and taken you to the edge you havn’t been a grazer you’ve been a decent individual !!

Help is out there in may forms and through many amazing people and groups , reach out to those closest to you and never give in and go to that dark place that you would be better of not being hear ,

You are Amazing You are Beautiful You are a Parent Brother Sister Aunt Uncle Son Daughter , You can achieve all you want never loose sight of that !!

Sefik

XXX