Millions Missing

Today marks #ME Action's, Millions Missing Campaign.  This is a worldwide day of protest for those with ME/CFS.

"On May 25th, 2016 #MEAction is global day of action for equality for ME. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief." (#ME Action).

"#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.  At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness." (#ME Action)

Events are taking place in Washington, DC, London, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle, Melbourne, Ottawa (virtual) and online.

The UK protest is taking place at Richmond House in London.  Richmond House is where the main Department of Health is located.  Empty shoes are going to be placed to represent the millions of people who are missing out on a life because of ME.

I have been too worn out to find and send a pair of shoes for the protest, so have taken this picture to mark the occasion 

These are my slippers the shoes I wear the most, missing out on real life and real shoes. ‪#‎MissingMillions

People are also being asked what they are missing because of the ME/CFS‬.

• I am missing nearly 20 years of normal life.
• I am missing out on being a normal Mum, wife, daughter etc (I have never been a well Mum or Wife)
• I am missing out on being able to work and earn my own money
• I am missing being independent and doing things for myself and my family.
• I am missing being able to walk
• I am missing being able to use public transport and travel
• I am missing being able to look after my own house and have things the way I like.
• I am missing being able to use my brain and use the qualifications I worked hard for.
• I miss being having  a whole day to be able to do things (rest times are essential)
• I miss not being able to drive when and where I want to.
• I miss being able to cook and bake.
• I miss nice normal food (due to food intolerances)
• I miss being able to read a book and know what is happening.
• I miss being able to watch TV and take in the programme.
• I miss being able to care for people and help people.
• I miss my energy, my stamina
• I miss being able to have fun
• I miss happiness, joy and laughter
• I miss my concentration and understanding
• I miss the outside world ( I can get out, but it's very limited and has to be for essentials like the school run and appointments)
• I miss my health, I can't remember what a day without symptoms feels like

The list could go on much more, but it's long enough and I hope gives some idea of what people with ME miss out on.  Every ones list would be different as symptoms and abilities vary so much.  The one thing we are all missing out on is an understanding of the condition and effective treatments.  So much is understood about other conditions and treatments are amazing.  ME/CFS  feels like it is forgotten and ignored.  It's just not a high priority as it is not normally life threatening or widespread enough to warrant attention.  

Meet Marianne

Marianne is a fellow ME sufferer.

What is your craft?

I enjoy writing, playing with words, decorating envelopes or letters, making cards, knitting, painting, drawing - though due to illness little is possible these days for now it's decorating envelopes for the three penpals I have which is like monthly to bimonthly 

How did you get started

I started crafting as a child

What is you favourite craft product?

For glitter paint I found Creall the best brand cost/quality/quantity wise and for pastels Van Gogh (brand)

What is your favourite part of your craft

I use all materials I can think off and the most fun is just seeing something that seems useless and turn it into a part of something gorgeous 

What is the worst part?

The hardest part for now is being limited due to illness, then again it too opens ways to search for ways to get things done still which for now means different ways to decorate envelopes instead of doing my watercolour paintings also the envelopes will vary from using felt tips to stickers or just a few stars in ballpoint - whatever I can do at what point .

How do I know if it is working?

If you have read my previous post you will know I am trying something called Alpha Stim.  It's an expensive piece of equipment that is meant to help with pain, anxiety and depression.

"The Alpha-Stim® M unites Microcurrent Electrical Therapy (MET) with Cranial Electrotherapy (CES) like never before. Microcurrent Electrical Therapy has been proven to treat acute, chronic and postoperative pain. This covers all sorts of conditions, including problems that are hard to treat with other methods. The device does this by transferring a tiny electric current to the body, which gives you long-lasting pain-relief. Unlike TENS machines, which uses a current far greater than that of the body, MET uses a much lower and safer current to provide sustained cumulative results. By utilising CES in addition to MET, the device has the ability to treat a range of psychological conditions, like Stress, Anxiety and Insomnia."

When I first tried it, it made me feel sick and dizzy, I was advised to keep trying on a lower setting.  I have been doing this for a while and am using the pads rather than ear clips as they are supposed to cause less of an issue with dizziness.  I really can't tell any difference.  My dizziness is bad, but has been for a while and it is driving me mad as it makes every day takes difficult.  I don't know if the Stim is making it worse or if it's some sort of flare.  I am used to being dizzy I have had it for 20 years so no idea what has made it worse.  A recent blood test showed that I am slightly anaemic and I have to have another test to see if it is because of low iron or because of a potential bleed somewhere.  My Vit D is also a bit low and I have begun medication for that.  I also had an ECG as I have a lot of palpitations especially when trying to rest, but the ECG showed I have a "perfect" heart!  I have never been called perfect before!  I also increased some of my medication at the end of last year which could also be causing the dizziness, but it's difficult to know.

Since I have been using the Stim, I seem to have been even more tired, needing extra rest during the day and going to bed before my daughter most nights.  The Stim is not supposed to make you more awake, but it is supposed to help relax and help with insomnia, but I haven't slept any better.  One day when using it, I got a shooting pain up my neck.

Sometimes I feel that I am being a bit calmer overall and dealing with things a bit better, but if so it's marginal.  My pain has been a bit better at times too, but then it can be really bad too.  I am taking less painkillers, but that is because my GP asked me to stop the anti inflammatories.  I sometimes think the pain is better because of the adrenaline that causes the heart pounding and restlessness.  On the other hand I am taking more codeine now which causes dizziness and headaches.

I have the Stim for a 60 day trial, or rather you can return for a refund up to 60 days.  I have about 3 weeks left, but feel that I have to use it and say it works, but also think that for the price it needs to be making a bigger impact to justify the cost and keeping it and there are certainly other things the money could be used for.  The refund is also not a full refund as you still have to cover the consumables that come with it, and that is £89.  Of course if I get stressed about it working then it is going to be difficult to see any results.

Looking online I can't see any negative reviews, which does seem a bit strange. There are a couple of people on Amazon who said it hasn't worked for them.

I was convinced to try it when I saw that it could be used for children too as I thought I could more justify the cost if we could get the benefit as a whole family, but now I am reluctant to try it on others as it seems just weird.  Rob and Emily have anxiety issues, but given that Rob had a brain tumour and Emily is so young I am wary of them using it.  If it was having a noticeable effect on me and no side effects then I would try them too.

I know I am funny about anything that messes with my head, I get dizzier having my hair done, when travelling or even wearing a hat sometimes. Noise makes me dizzy, sugar makes me dizzy, so feel like I am an awkward so and so as I have been told many times too.

I know I need to give it a bit more chance to work, but there is just something that makes me feel I don't like it.  Am I being too negative to allow it to work?  I guess I have to give it a bit longer.  There is never going to be a magic cure and any little improvement is better than nothing, but really don't know.  What if I decide it's not working and send it back and then find the dizziness stays the same and the pain, anxiety and insomnia increase, I can't buy it again!

Any thoughts anyone?

Overwhelmed again.

I am feeling totally over whelmed at the moment.

I had to be rescued by RAC yesterday.  The driver seatbelt has been jamming for a while.  Rob rang dealer who said they couldn't look at it until end of May and to ring RAC if stuck.  Yesterday it got stuck in school car park so I was unable to drive.  A lovely RAC man came to my rescue and got us home and has taken car.  No idea when it will be fixed.  VW can't get us a courtesy car, but RAC got us one last night.  It was difficult to organise the help as I can't use phone, so messaging back and forward to Rob who was at work.  Then the RAC man got the belt moving and wanted me to drive 10 miles to dealer!  My limit is much less than that and when I know where I am going and without a panicking child in the car too.  So then I had to ring Rob who arranged that could just drive home and then the car would be towed.  It was then manic when Rob got in trying to sort out the courtesy car, but the RAC were very efficient.  I was left with a car I haven't driven before and that is bigger than I am used to, whilst feeling awful to get Emily to school this morning.  To be fair I was offered help, but wanted to keep as normal as possible for Emily.

As soon as I got back from taking her to school my phone started ringing about the car, but I couldn't speak to them so asked them to ring my husband if they needed to speak to us.  I was also sent a video message of my car on a ramp saying we have checked you vehicle.  When Rob spoke to them they said they hadn't looked at it and didn't know when they would.  It all got too much for me.  I get so overwhelmed and having to deal with unexpected things really knocks me out.  I have been trying to rest all day, but so unsettled.  Only consolation is that Emily has gone out with a friend straight from school, so I can sit quiet for a bit longer.

Emily is very unsettled about residential next week and bedtimes are hard work.  Her hamster is very sick too, it's not eaten or drunk for 2 weeks and has gone blind, the timing is not good.  The hamster was her birthday present and is only around 6 months old.  I feel really sorry for her everything she has contact with seems to be sick or old.  She gets very upset about my Dad's condition and we have a cat who is 17 and going strong, but we are always asking her to leave him alone.  On top of having a Mum with ME and a Dad who is on life saving medication following cancer, its not surprising that she also gets overwhelmed.  She said to me last night that I was special because I was different, but it is unusual for her to think like that.  In some ways I think her understanding is getting a bit better and she will try to be helpful, but she also gets really frustrated and wants me to do things that I can't.  It must be hard seeing me struggle to deal with seemingly trivial issues and she offered to speak on the phone when we were trying to sort the car as she knows I can't, but she was also panicking as she knew we were in a difficult situation.  It didn't bother me too much as I knew we were safe and not stranded on a road or anything, but the stress of managing the situation was hard.  I did have to laugh though when Emily asked me if it was the RAF we were waiting for!

I had some blood tests and an ECG a couple of weeks ago and I get results next week.  I don't know what results are but they rang me to say I needed a double appointment and then gave me an appointment 3 weeks later.  I have to go next Friday straight from collecting Emily after the trip so the timing is not good, but at least Rob will be there with Emily.  I have no idea what it is they want to see me about, but assume it is not urgent.  The tests were to investigate my dizziness and palpitations which have got worse.  They could be worse as I increased my Amitriptyline at the end of last year to help with pain and sleep.  When I went for my medication review in March I was asked to stop my anti inflammatory painkillers as I have stomach problems.  The daily indegestion has now stopped, I was getting it despite taking a high dose of Omeprazole.  Stopping the anti inflammatories meant I was left with little for pain control only Paracetamol and Cocodamol.  Cocodamol also makes me dizzy, constipated and headachy, so left with trying to take as little as possible and try other ways to manage the pain.  In the last few weeks my pain has not been unbearable, but I think that is because of the adrenaline that is making me so restless.

I was told about a device called Alpha Stim that has helped a friend with her ME, anxiety, depression and pain.  I was very sceptical and the device is very expensive, but a drug free treatment was tempting.  Rob did some research and spoke to the friend and decided we should get one as there is a 60 day trial period.  Using it seems to be making me feel more sick and dizzy, but it's difficult to tell as I am stressed with other issues.  I am trying to get some advice from the company who are quite helpful.  I also think though the stress of wanting it to work and worrying about the cost of it is having an effect.  The friend says she feels calm when using hers, but I don't find it relaxing, except that I use it when lying down.  I wasn't hoping for miracles, but didn't expect to feel worse and hoped that it might just take the edge off some symptoms.  I was wary about trying, but I take medication and don't worry about that.  And thinking about he cost too, I spend £104 a year on a prepayment certificate for my medication, then £32 a month on Physio to help with pain.  I also have a wheelchair, a mobility scooter and hearing aids so the costs mount up so the device seemed a bit less extreme..  I really don't know if I should keep trying in the hope things will settle down a bit or whether I am making things worse. and I need to make the decision before the 60 day deadline, which is still a while off, but I feel under pressure, which of course doesn't help.

In my calmer moments I have been trying to get into things for ME awareness, see my post http://poohbear71.blogspot.co.uk/2016/05/undies-on-outside.html.  I have also made a few ME themed things

I am trying to make a few in return for donations to ME charities, it gives me something to focus on and enjoy, but can also become stressful as I don't like to let people down or keep them waiting and I can only do them when I am on my own and not having to deal with other things.

Against my better judgement I also signed up for a Play Therapy course.  It is all online and course work isn't compulsory, but of course I want to do it.  I decided to do it as it is something I had an interest in before I was ill and also thought it might be helpful with some of Emily's issues.  So far I have read first module and answered some multi choice questions, but I had to keep going back through text to find answers as I can't remember what I have read.  Then there some questions to answer in your own words, I gave up at that point, that will take a lot more effort.  There are 9 modules. In just over a month I have done a tiny bit of it.  I am so upset and frustrated as it feels I can't stick at or manage anything.  The temptation is to keep trying things in the hope that I will find something I can do or something that helps my condition, but I always end up feeling worse and being unable to cope with my daily routine.

When I do manage to do something it seems to take all my energy and I struggle with things that should be so simple or get myself in such a mess trying to work something out and it ends up taking me hours to do five minute tasks.

I really need to take note of this sent to me by my Uncle this week.

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.

April Makes

Card from Dee Crafts, papers printed using Craftville backing paper builder.  Union jack paper is paper strips from Yellow Moon, water made using Sizzix grass die and sun using Sizzix sun sizzlet.  Greeting created with powerpoint.

Made using my own photo of sun rise through Emily's bedroom window with dreamcatcher in front.  Dotty card blank from Dee craft.

May 12th is ME awareness day so I made this card using papers printed with Craftville backing paper. Greeting created with powerpoint. Card from Dee Craft

May 12th is ME awareness day so I made this card using papers printed with Craftville backing paper and tea bag tile maker.  Greeting created with powerpoint.  Card from Dee Craft

After seeing my ME elephant I was asked to do a personalised Elephant card for an 80th birthday.  Again I used baking paper created with Craftville backing paper maker and also one from Paperprintables.  Paperprintables has some great papers and costs £1 per month to use. 

Another ME awareness make.  Spoons bought on Ebay, hearts, beads and findings from Beads Direct.

To find out how spoons relate to ME, check out Spoon Theory.  P.S I am useless at using the spoon theory, maybe these earrings will remind me!

Another requested card for a 60th wedding anniversary.  I was really not sure about this one and had several attempts to get it to look right, but the person who ordered it likes it, hope the recipients do to.  What an achievement 60 years of marriage.  Personalised papers printed with backing paper maker at Craftville, card from Deecraft.  Other patterns papers from my stock, source unknown.

Personalised papers printed with backing paper maker at Craftville, card from Deecraft.  Other patterns papers from my stock, source unknown.

Created for my Mum's birthday. Pattern by Carol Lepard, from Craftsuprint.  Embossed with Darice butterfly folder

Embossed with Darice paw print folder.  Heart shapes cut with Spellbinders Shapeabilities Pawing Around cut and emboss stencil.

Card from Dee Crafts, papers printed using Craftville backing paper builder.  

Finally finished off my quilted cat block for bedroom wall.  Heart shapes cut with Spellbinders Shapeabilities Pawing Around cut and emboss stencil.  Framed in Ikea box frame.  Buttons for eyes and nose (not very clear)

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.