ME Pyjama Party
We done it 🎉
The good news is We will be doing it again next year .
If you don’t know me or have stumbled across me unintentionally, firstly Hi 👋 . I am a very nearly 40 year old Wife & Mother and I have Severe ME.
The more I think about it , it leads me to the conclusion that my symptoms started in 2005.
We had just lost a very special person in my life , My Uncle John . He was an amazing person , he always delivered birthday cards in person , always made a fuss of you . He just cared so much about his family, he loved us all so much but most of all his wife Peggy . He had been ill , Asbestosis related . We were due to fly out to Rome on the Friday to look at wedding venues and get a feel for the place . My Dad called me as I was on the train home and I couldn’t help myself , I was just inconsolable. I got home and called Aunty Peggy ,we spoke and she told me what the Drs had said . I wanted to see him but he didn’t want the younger members of the family to see him , knowing what the illness does I am relieved in a way .
I didn’t sleep much that night I was just too upset . We had a 6am flight , I couldn’t rest on the plane . We arrived at Our hotel and went for a wander to get our bearings . We sat in a bar drinking and talking and ended with my poor Hubby ( he was my fiancé at the time ) having to undress me and put me to bed . The next morning I was hungover and vomiting black , well I don’t really know what it was .
Over the next few months I had several coughs & colds that I couldn’t get over . Just before we were due to fly out for our wedding I had an ear infection that I couldn’t shake off . It got so bad that my Dr was not going to allow me to fly . Thankfully everything turned out ok .
I was officially Diagnosed on 13th December 2012 . My life is now existence not living .
I have had some really dark thoughts since being diagnosed. I am now bedridden and dependent on others to do everything for me .
I don’t ever want another person to feel that way .
Since I have this illness I can’t do much of anything, but I can try and make a difference.
Friday 12th May 2017 ME Pyjama Party was launched .
ME Pyjama Party has a real opportunity to bring together every single ME Sufferer across the world . All you need to do to get involved is take a picture in your PJs and post it to social media .
Could you imagine the impact that would have across the world . No news channel would be talking about a celebrity, ME would be the news .
We have the ability to show the world the face of ME , statistics vary dependent on what you read but an estimated 17 million people in the world have ME .
Could you imagine 17 million pictures uploaded to social media on 12th May ?
That’s why I started this . That’s why I am blogging at 2:56 am.
I chose to set up a JustGiving page to raise money for The ME Association, I chose them because of everything they have done to really make a difference in my life . They have been there for me at my darkest times .
Getting involved is easy . If you are still mobile you could :
Wear PJs on the school run.
Involve your employer and have a dress down PJ day.
PJ Party day at school or college.
After school classes or groups could all wear pjs .
You could raise money by asking for £1 , £5 or even a £10 donation to the charity of your choice . Set up a JustGiving page most charities for ME have them , they are so easy to set up too .
I know that this could be the reason the rest of the world starts asking , What is ME ?
We can do this together , every single one of us standing (sitting or laying down he he ) as one , all you have to do is take a picture in your PJs and upload it to social media using #MEPJParty .
Have a look at the ME PJ Party Facebook page .
If you haven’t already made a donation there is still time , go to My ME PJ Party JustGiving Page .
You can still get involved . I would love it if you do x
Love Always x
Alisha x x