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.

New Year, Same Old

As ever Christmas has completely wiped me out, I feel really ill and in pain and don't know what to do with myself, I want to sleep for weeks, but not an option as a) I don't sleep well and b) life goes on regardless.

Christmas was very hectic and I had little help or support, much less rest than I needed and ate many things that disagree with me all in the name of keeping people happy!  I tried most of the time to grin and bear it and be happy and join in, but it wasn't always possible.  I tried my best and tried too hard and always pay the price.  Being away from home is difficult and means I have little left when I return home which is when Emily needs me most as there is no one else around, I feel like I am really unfair to her and I feel like I get my priorities mixed up, pushing my limits for others, who much of the time don't appreciate it and then having to say no to Emily.

New Year is always a bad time, it marks another year of being ill and nothing much changing, another year of wanting to do things and wanting to make plans, but knowing I can't do them.  Hoping this year will be better or different, but knowing its unlikely.  I always have so many things I want to be able to do to feel more productive and more normal and feel like I make a contribution to the world.

Following my assessment by social services yesterday, it is likely that I will lose more of my support from what she was saying rules have been changed so that we can't employ people in the way that I do, so it will be down to whether her manager ok's it or not, if she doesn't there is no way around it and we will have to stop claiming the money and get rid of the help as we can't meet the criteria they set. They have realised what they set up is not doable any more and have changed the rules so that people will not be able to claim and will either have to go back to their care packages or go without.  and to add to that DLA is being scrapped and the criteria for new benefit have changed so can't get things like motability car and blue badge any more, my needs haven't changed at all it the criteria to make everything more difficult. These payments ate suppose to allow people to be as independent as possible and it is all been taken away.

I am going to stop now as I don't want this just to become a huge moan, I need to refocus and think positive, but its hard with little support and when feeling so worn out and ill.  There is not much point feeling sorry for myself and feeling that I am being picked on or treated badly, rules and attitudes can't be changed, I just need a while to get over the festive season and then think out how to carry on.

Painful day

Its been an awful pain filled day today.  My pain has been worse recently and today it has been unbelievable and at times I have not known what to do with myself, unable to settle or get comfy for anything.  I think it has been caused by some of the physical things I have been doing like sorting things out in Emily's bedroom, holding Emily to calm her down and repeated trips up the stairs to take Emily back to bed, plus it the end of the school holidays and it always hits me when I do slow down a bit, not that life has really slowed down I just get a quiet bit during the day.  Today everything seems to hurt especially my lower back, neck and legs.  I have been popping the painkillers but sometimes I think they make it worse so not taken any for a bit, will dose up at bedtime instead at least then I have a small chance of sleeping.

I find that emotional stuff makes my pain worse too.  Today is the 3rd anniversary of my cousin's death, he died just 37 in an accident.  I feel for his family and fiancée and on days like this they are in my thoughts more.

My cousin with Emily at her 3rd birthday.

with Emily at her naming ceremony

My good friend Pat read my blog last week and realised I needed someone to talk to and kindly listened to me today and helped me to see this from a different perspective and gave me other things to think about, she is a very calm lady and very perceptive so is always helpful and I am very grateful for her listening and thoughts.

Emily is outside with Rob as Rob has bought a bike to go cycling with her, they don't seem to be doing much cycling though, I think Emily thinks she needs to teach him to ride it!