"Simple version give up one luxury during October and donate the money saved to Invest in ME.
Appreciate there are very few pleasure / luxuries for people with M.E. however we are determined and eager to find a cure.
During the month of October we are encouraging people with or without M.E. to give up one luxury and donate the money saved to Invest in ME Research - Who have a strategy for research and are working so hard on behalf of people with M.E. to find the cause / cure. Every penny donated goes to Biomedical Research in M.E. as the charity is run by volunteers.
Just Giving Donation page - https://www.justgiving.com/GIUtober
Via text GIUT88 (£1 to £10) to 70070 E.g. GIUT88 £5"
I have joined a group who are giving up Facebook for a month! This may not save me any money, but it could as I won't be tempted by products I see in the craft groups or by adverts on the pages and it will certainly save me time and energy and I may start November feeling a bit better and ready to tackle the run up to Christmas, who knows?!
Anyone who follows my blog or me on Facebook will know I did a big event for ME in May which took a lot of time and effort and I paid the consequences. You can find the posts in my blog archive for April and May. I spent a lot of time chasing people for sponsorship and did a couple of awareness events and used quite a bit of personal money and raised over £500 for Action for ME. Earlier this month I posted some information on Facebook from Action for ME and discovered that many people don't agree with the principles they adopt, I didn't look into things like that when choosing a charity and apologise if I offended anyone with my support. This time I am supporting Invest in ME by being part of the group. Invest in ME are much more research focused and are trying to get a drug called Rituximab trialled, this a drug used in cancers and auto immune conditions which is thought would be beneficial to those with ME. They are
"an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
We have links nationwide and also internationally. Invest in ME are one of the founding members of The European ME Alliance.
Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.
Invest in ME want to establish a national strategy of biomedical research into M.E. and establish a UK and European Centre of Excellence for biomedical research into M.E."
Their website seems a bit out of date, but they have a current Facebook page and also Let's Do it for ME Facebook.
I am not going to chase people for sponsorship this time or inundate people with information and pictures, this time I hope to raise awareness and maybe some money by my absence. I wonder if anyone will actually notice?
I have a bit of a love hate relationship with Facebook and was thinking of taking a break before this opportunity arose. It is so easy to sit down for a few minutes and get distracted by all the goings on. I spend hours scrolling through craft groups and liking things, being tempted to buy thinks and upset because I am not doing my own things. It's so easy to get caught up in other people's dramas or problems and whilst I want to show my support and help people where I can, it does have a detrimental effect on my health and mood. I also get upset when people post about things they have done that I am not able to do. I have many friends on Facebook and do use it for support and to promote my blog so will miss that side of it. I am hoping that people will still keep in touch via other means and realise that I am not doing this to get away from people or because I don't care.
I am hoping to have a peaceful time and recover from all the things that have been going on around me like school holidays, my Dad being in hospital, having work done in the house. Emily's room is now all decorated and carpeted and we are slowly moving things in. We are slowly getting the rest of the house back to normal which is a relief, but don't have a lot of time or energy to get things done, but I have just about got my living room and dining room back. I am just getting over a cold which always knocks me back and things were uncertain about my Dad, but he is finally home and coping well.
Rob also had a job interview last week and has now got a new position, I am always worried that me being ill will count against him as he sometimes has to help me or look after Emily and he takes time off to do things that I can't do. The day he found out about the interview he had to leave work early as I was not well enough to drive for school pick up, I was convinced he wouldn't get the job. He does make up the time by working at home when I have gone to bed, but I just think it looks bad and it becomes a vicious circle when I need help and worry about asking for it. It's also hard when he works full time and then has to come home and cook tea and go shopping or take Emily to her after school groups, to me they are all the things I should be doing. As a consequence we see very little of each other and don't get to do things together.
I know that being on the computer is not a restful activity and get lulled into thinking well I am sitting down and not doing much, but then realise how much it has taken out of me and how sick and dizzy I feel. I know I can't read sitting up, but do use the computer sitting up and then wonder why I feel so awful. Or I sit down to look at Facebook to "relax", but it isn't relaxing at all. ME makes even the simplest things difficult.
If you wish to support me do get in touch or donate to Just Giving Donation page - https://www.justgiving.com/GIUtober
Via text GIUT88 (£1 to £10) to 70070 E.g. GIUT88 £5"
I have made a donation, but it's not much, I just hope every bit helps.
Now it's time for me to move off the computer.
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