Undies on the outside

I know I said I wasn't actively fundraising for ME this year, but after a friend did the Undies challenge I decided to give it a go on a wet and miserable Bank Holiday morning, whilst feeling rather rubbish.

To add to the fun I got my daughter, husband and cat to join in.  How do we look?

I'm a Superhero and wearing my undies on the outside to end ME/CFS! I nominate any of my lovely friends who like a bit of fun to do the ‪#‎UndiesChallenge‬ (but no pressure if you don't want to)

HOW DO I DO THE CHALLENGE? (post your photo then copy & paste these instructions)

1. Take a photo or video wearing your undies on the outside

2. Donate $10 to the Open Medicine Foundation's END ME/CFS Project at bit.ly/UOTO1

3. Share the photo / video on social media using the hashtag #UndiesChallenge 

4. Tag 3 other people.

$10 is £6.81, if paying through paypal it is £7.06, well it is today anyway.

Facebook withdrawal!

Well I am on day 7 without Facebook as my my Give It Uptober.  I don't miss it except for something to keep me occupied as I have a tendency to overdo it if not distracted by Facebook as I need to be doing something.  It is a bit weird not knowing what people are doing and not telling people what I have been doing, but it is all quite pointless and a waste of time and precious energy.  I also share my blog posts on Facebook, so not sure how many people will see this one.

Last night a friend messaged me to ask why I was on Facebook, I wasn't, but due to having the messages come into my phone, if I am using my phone I appear as available on Facebook.  Rob thinks he has sorted it and I haven't been cheating!  Facebook emailed me to say I have 5 messages, but I have no idea who they are from, I don't normally get many messages, wonder if some people are trying to catch me out?!  I am wondering whether to disable my account, but to do that I have to go into Facebook!

I am still spending too much time online, looking at news which is usually depressing and scrolling through Pinterest, which I don't normally do a lot. I have pinned a lot of nice clothes and recipes, but I know I won't get the clothes or use the recipes, so yet another waste of time. I have been looking for Christmas present ideas, but have no idea what to get for anyone.

I have been trying to do some craft bits, but by the time I get things out and have run out of energy or inspiration or can't concentrate properly.  As usual I have lots of ideas and not enough time and energy or I lose confidence and don't think things will be good enough so avoid doing them.

There is a lot of sorting out to do in the house now that building and decorating etc is finished.  It is hard work though and I can only do small amounts and it's a long way up 2 flights of stairs especially as 1 flight is bad enough, so I have to limit how much I go up there and have to have a rest halfway!!  It makes me feel so useless.  The room itself is great, but Emily hasn't fully moved in yet.  We need to crack on to get things sorted out so we can see what we have and get our stuff back from storage which is costing money.  I am so ashamed of how much stuff we have and much of it doesn't get used.  There is so much craft stuff and books it's embarrassing and it's no wonder I feel overwhelmed and can never decide what to do.

I was thinking about all the stuff and about Christmas.  As I said I have no idea what to get for people and whilst there are always things I would like, much of it seems pretty pointless; shoes, clothes, craft stuff and books are lovely to receive but rarely get used and have to be kept somewhere.

Well time to go, getting quite dizzy and tired, I had little sleep due to Emily being upset last night and sleeping in with me and because I have been doing too much.  It sounds mad saying I have done too much when it feels like nothing ever gets done and there is so much that needs sorting out.  I am also waiting for the Audiologist to come and adjust my hearing aids, I had them turned up at the weekend, but they are too loud and that is making me dizzy too, but if they get turned down I can't hear speech, it's rather complicated and not much fun having them set up and adjusted, it makes me very tired and dizzy and makes my Tinnitus much worse and then I have no idea what I can hear and what I can't hear!!

As I am currently away from Facebook, where I share and promote my blog, please could you share this blog if you have found it interesting or useful.  Many thanks

Give It Uptober

October is the month where people give things up for charity.  I think it started with people going sober for a month or giving up luxuries and donating the money saved during the month to charity.  The idea has been adopted by some ME charities including Let's Do it for ME and Invest in ME who state

"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.