May - ME Awareness month

Myalgic Encephalomyelitis (M.E.) is a disabling and chronic illness, devastating the lives of 250,000 people in the UK. May is ME awareness month, with the main day being May 12th. Help us raise awareness and raise funds for ME research.

I have had ME for nearly 20 years and there is still no know diagnosis or cure. My husband and daughter have never known me well and I hate the effect it has on us all every single day. I am not as badly affected as many, but still lead a very limited life. I am not able to work or care properly for my family and every day breaks my heart.

Please show your support by making a donation and or finding out a little bit about ME and how it affects sufferers. The government is currently reassessing disability payments and benefits and many of us will lose what little we get and other benefits such as mobility cars and blue badges because our illness is not visible enough or it is thought to be psychological or fake.

Believe me I wouldn't chose to live like this and make life so difficult for myself and those I love. It's a cruel and unforgiving illness.

Thank you for reading, please share if you can.

My justgiving page is https://www.justgiving.com/Jane-Shaw5

Other events are taking place online;

www.justgiving.com/teams/teamprincess2016

https://mydonate.bt.com/fundraisers/teamprincesshope

https://mydonate.bt.com/fundraisers/teamprincess

https://mydonate.bt.com/events/teamprincesssmileforme

https://www.justgiving.com/femi-Sowande?utm_id=37

There are also many fundraising events that people can take part in

https://www.facebook.com/events/439547679564527/

http://www.undiesontheoutside.org/

http://millionsmissing.meaction.net/virtual/

Information about ME can be found at;

Invest in ME, Action for ME, ME Association, AYME, ReMEmber, ME Research

Wikipedia

I am not actively fundraising this year as it was very hard work and there are only so many times you can ask people to donate.  But if anyone wants me to make cards or jewellery I will ask them for a donation to an ME charity.

I have made these for ME awareness

These are available and I can make same or similar check out my April Makes or other makes posts for other examples of what I make.

Princess for a day, reality hits!

So much for feeling like a Princess, I feel awful.  The build up to the day and preparing things has left me exhausted, in lots of pain, feeling sick and dizzy, with a sore throat, serious tingling in my feet, legs, hands and face and poor concentration.  The events of the last few days, having my hair done, having the photos taken and dealing with all the stuff around the hamster dying are really hitting home today.  Me doesn't respect what day it is or let you have a day off for some fun.

I am going into Emily's class later to tell them about having ME and to make Princess crowns with them.  I had so many plans and things I would love to do with them, but in reality I'll probably just bore them and look stupid.  I am not dressed as a Princess today, my dress is too heavy and awkward to wear again let alone go into school and do messy activities.  The dress I wore on Sunday for the Princess photos is my wedding dress, I have always dreamed of wearing it again and feeling so special, but in reality it was very hard work getting ready and walking around and I didn't get that special feeling I had dreamed of.  I did have ME when we got married 14 years ago next month and it had to be factored into the day and the wedding plans, but I am sure I wouldn't be able to do it again now, but it's also amazing what adrenaline and determination can do.

I have lots of ideas of how to use the photos and have made up some to share, but it will take weeks to do the others as I need help with them and the energy and concentration required for the task.

We did enjoy dressing as Princesses, Emily was so excited and you can see from the pictures she loved it and was definitely the star of the show.

I am paying the price today for my enthusiasm and efforts and just when I wanted to be my best I have had to get Rob to take Emily to school and he has to come and help me at school later as despite all my ideas I can't do much more than turn up and hope everyone else has fun.  This is the sad reality of ME and the price my family have to pay too.  Rob has a full time job and Emily is trying to deal with growing up, school and the loss of her pet hamster (a big deal when you are 8).

Please follow the days events on Princess for ME, there is an auction later, some of my bracelets and cards are in it.  Also visit ME organisations such as Action for ME, ME association, AYME or google ME and see what comes up!

There is a lot of ME activity on Facebook and Twitter today, so please show your support if you use these sites.  I am Jane E M Shaw on Facebook.  I don't understand Twitter and don't need any other distractions!

Well here are some of my pictures, I hope you will keep following me and the pictures as I create them. I have a lot more to say and share, but ME is not willing and I don't want to miss this afternoon through pushing even harder.  The pictures are not in any particular order, please make sure yo go to the bottom for the ones that are captioned.

Thank to all those who have supported me and donated, there is still chance Just Giving