Sunday, 28 December 2014

Tuesday, 23 December 2014

Wish 29 in Portugal

I love how the Internet is international (might not be saying that if I lived in North Korea!), here is wish 29 I'm Portugal;

Hey Vikki,

Last night I emailed to let you know how I had got on with fulfilling some of your birthday wishes. Well this evening my kids had fun completing wish 29, giving someone a Christmas decoration.

We chose the older lady who runs our local bar / shop because she is really sweet and awfully nice too us. The bar really is the centre of our very small community. We chose two beaded ornaments, a sstar and a Santa figure. The kids wrapped them up and we gave them to her in a quiet moment this evening.

She cried, which we really weren't expecting! But I think they were nice tears :)

With love,

Monday, 22 December 2014

Post from number 10

My birthday post from Downing Street :)

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And a blurry screenshot of the tweet

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Sunday, 21 December 2014

The Wishes

This is my 30 before 30 list
But here comes the twist,
Because of my illness and disability
You will have to do it for me,
See I have these plans in my head
But I'm stuck 24/7 in a hospital bed!

Please help tick things off my 30 before 30 list that I'm too unwell to do myself. My 30th birthday is on 21/12/2014 and will be my 13th birthday stuck in bed with severe M.E

Wish 1- Join the bone marrow register
Wish 2- 300,000 views on this video
Wish 3- Fundraise and purchase a beach wheelchair for visitors to Norfolk
Wish 4- Send 30 pieces of snail mail
Wish 5- Give a balloon or flower to someone
Wish 6- Do a RAOK
Wish 7- Watch Voice's from the shadows
Wish 8- Donate time or an activity to a nursing home/hospital/day centre
Wish 9- Watch an sunset or sunrise
Wish 10- Download Spread The Hope charity single
Wish 11- Know The Glow and save a childs life
Wish 12- Donate items to a food bank or pay for a childs lunch
Wish 13- Copy of Severe M.E Guide to Living - COMPLETE
Wish 14- Donate blood/blood products
Wish 15- Make/sew an I Spy Bag or Twiddle Muff
Wish 16- Read this guide to supporting parents who have lost a child
Wish 17- The gift of music COMPLETE
Wish 18- Helping Dottie
Wish 19- Run the London Marathon
Wish 20-Make/sew/knit/crochet a blanket for someone who is bedbound
Wish 21- Invite someone with special needs to a party
Wish 22- Donate small items to a non profit hospital
Wish 23- Take someone out who couldn't otherwise go
Wish 24- Get a Carbon Monoxide alarm NEW
Wish 25- Have my list trend on Twitter #my30wishes
Wish 26- Use your computer space to help find a cure for many conditions
Wish 27- Donate unused medication and medical supplies
Wish 28- Buy a £2.99 bubble wand for a child who won't get any presents COMPLETE
Wish 29- Give a decoration to someone
Wish 30- Do something you always wanted to do

I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you

Beach chair, inching closer

I know things are tight but I wondered if anyone could spare a pound towards my £500 target for a beach wheelchair please? It will mean in 2015 disabled people and their families will be able to enjoy a day out at the beach

Saturday, 20 December 2014

Wish 19- help needed

Wish 19- Run the London Marathon

Everyone has been so kind in helping with my wishes, from media to friends to people I don't (or should that say previously didn't) know. I even have an envelope to open tomorrow from the Prime Minister!

Wish 19 is to run the London marathon and of course being bedbound I need someone to be my legs for me. I have a place in the marathon, someone kindly offered to run it for me and I paid my entrance free. Virgin London Marathon are refusing to let me transfer the place to someone to run for me though :(

Please help by sending a
Tweet and
#richardbranson and #my30wishes

All I need is for them to let someone be my body for me, the whole idea of 30 Wishes is for people to do what I can't and running the marathon is high on my list!

Thank you

Ps) Hello Mr Branson or Mr Bayliss if your reading this. I'm turning 30 this weekend and am spending my 30th birthday stuck in bed just like my 18th and 21st due to severe M.E. I've published a '30 before 30 list' and am asking people to do the wishes on my behalf. Lots of people are kindly helping including BBC Surrey who granted 10 wishes, but unfortunately I received a flat no when I asked to have someone run the marathon for me despite having a confirmed (and paid) place. If you could help I would be so grateful, my email is


Wish 5- give a balloon of flower to someone

Wish COMPLETE! Thank you everyone, it's been lovely hearing of the people you have all made smile with flowers or balloons. Much to my surprise yesterday my Godmother gave my Mum some roses and then today Jill and Gracie visited with balloons (thank you for a lovely visit) and the most beautiful bouquet of flowers arrived from Steve from Flowers by Rosemary. I was talking to my friend Kate and kept forgetting what I was trying to say as I said I couldn't get over how beautiful they are!

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Thank you everyone,


Wish 13 donate a copy of Severe M.E guide to living

Wish COMPLETE! Thank you everyone, that's 30 patients who lives will be made easier.

Friday, 19 December 2014

Wish -17 Gift of music update (get your tissues ready)

Wish 17- Give the gift of music

2 people have kindly given the gift of music for My 30 Wishes.

Amy kindly donated her piano to a local child who can now learn to play. The piano wasn't an unwanted item in Amy's house, it's just Amy has been far to ill with severe M.E to play for years. Letting go of such an item is a big thing, thank you Amy.

The other update was Sue made a donation to Sistema England so a child could learn to play. Sistema sent an email thanking us and explaining what a difference learning an instrument can make to a child, they work with children in some of the poorest parts of London. It was lovely to think of a child being helped but then we got this email and photograph which made us rather misty eyed!

"Dear Vikki

I hope you have been feeling better. I wanted to send you this photo of
Hadassa, aged 3. She is the girl that received the cello purchased by
Sistema England thanks to a generous donation from Sue Morgan in your
name. Hadassa desperately wanted to learn the cello as an older friend of
hers is already a very good cellist. Because of the donation made in your
name, she now has her own cello and has joined The Nucleo Project in
London, which she attends 4 afternoons a week.

Again many thanks for your kindness, and may you always have the strength
to carry on with your kind and generous initiatives.

Best wishes and happy holidays,


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Monday, 15 December 2014

Misty eye update

I need to get permission before I can share the outcome of a wish but I've been sent a picture of a child grinning and full of pride. All because someone granted one of my wishes. I will ask for permission to share and suggest you have a tissue close to hand :)

Wish 13 update

Wish 13- Sponsor a £5.99 guide to living with severe M.E

Thank you to everyone who has sponsored a severe. M.E guide, I am currently at 14 towards my target of 30.

If you would like to sponsor a guide you can here

Thank you

Saturday, 13 December 2014


Wish 28 Send a bubble wand to a child who won't have any other presents

A big thank you to everyone who helped with wish 28, it was completed within 48 hours. My hope was for 30 bubble wands to be ordered from Kids Company charity list and 33 have been ordered plus a book! That's 44 children who don't wake to presents under a tree will now receive a gift.

Thank you 30 Wish grafters :)

Tuesday, 9 December 2014

Wish 29- Give a decoration to someone

"My name is Vikki and I am addicted to Christmas decorations".

There I've said it, it's true, I love decorations. We haven't finished decorating my tree yet but we stopped counting at around the 100th decoration. I have a mixture of ones from shop ones from special people, handmade ones by friends, ones I've made and everything inbetween. Every year I get a decoration made with a special photo and treasure them all.

Giving decorations are a nice visual reminder of the fact you care. Every other year I've organised something decoration themed for a bedbound friend who came up with the brilliant idea one year of asking her friends to make a paper snowflake and write a message on it. Thanks to kind people online she had a 'snowstorm' with snowflakes in the 3 figures, another year it was paper chains with messages written on the links.

So my wish is for you to give someone a decoration, it doesn't have to be handmade or expensive and it's something you can get the kids involved with. Maybe your children could make one for an elderly neighbour.

Let's have My 30 Wishes also spread some Christmas cheer.

Wish 28- buy a £2.99 bubble wand for a child without any presents

Most British children wake up on Christmas Day to a bulging stocking and gifts under the tree. Not all children are as lucky, here is one child's story;

Kids Company do the most amazing work all year around but on Christmas Day they hold a huge party for children and vulnerable young people who wouldn't otherwise be having a visit from Father Christmas, a nice lunch or even just being surrounded with some Christmas Spirit. They started doing this after finding the suicide rate in children shot up at Christmas as kids dreaded being alone at what's meant to be such a happy time of year. Truly shocking this happens to kids around us.

Kids Company have a gift wish list of toys children have said they would like. On the wish list is a double bubble wand which costs only £2.99 (no postage), they have asked for 98 and ironically are 30 short of that target. Seeing as I love bubbles and am trying to create smiles in lots of 30 I thought this would make a perfect wish.

Could you order a £2.99 bubble wand for a child who won't otherwise be receiving a present this Christmas? I'm ordering one now to start things off so. Tonight we are up to 13/30 thank you

To order just go to
Enter list number 607119, there's no password.

Sunday, 7 December 2014

Wish updates10-20

Wish 11- Know The Glow and save a childs life

My aim is to have wish 11 read by 3000 people, its currently at 1418 so half way there. Please do share it on Facebook, Twitter or any parenting groups. You never know whose child you might save

Wish 12- Donate items to a food bank or pay for a childs lunch

Thank you to everyone who has donated to a food bank, several of you already do which is lovely but have offered to add some extra bits.
I don’t know if I have any American readers who would be willing to pay the American school child’s bill, could anyone? Details are on the original post.

I brought an advent calendar for it after being inspired by Jason Manford which went into the food bank near where Dad works and if I have the chance I will try and buy some chocolate coins to donate too.

This wish has hit my target though thanks to a very generous someone (who didn’t tell me or give me their name) who donated so much food to a bank in my name that its able to provide 64 MEALS! WOW WOW WOW

Wish 13- Copy of Severe M.E Guide to Living

Thank you to everyone who has made a donation to purchase these amazing books to people in desperate need of help and advice. When your body is failing and doctors aren’t helping the advice within is invaluable to get you through the physical and emotional challenges and help you find some quality of life however small. The advice I received from the author Emily (who was a wonderful friend but passed away from complications from her very severe ME) has kept out of hospital on many occasions

I’m hoping to get up to 30 donated copies (they cost £5.99 with free postage), currently at 11/30

If you could donate a copy then the link to do so is

Emily would be so pleased

Wish 14- Donate blood/blood products

I’ve had a lot of people email me to say they have donated blood in the past or are regular donors which is wonderful, although it doesn’t count for my list its great people are doing it.

I received this lovely email from someone who went and donated (I’ve left her name off)

Hi Vikki, I was added to your 30 Wishes Facebook grou. I think it's such a lovely idea, I'm always making bucket lists and love to see what other people have on theirs. I'm really excited to help you with yours. I'm already a blood donor (I've attached proof above!) but to be honest I can get a bit forgetful with it and my appointments aren't as regular as they could be. I'm able to donate again in January (as I donated last month so have to wait a few months till I'm allowed again) and I promise that no matter how busy I am I will attend the appointment and will be thinking of you, and I'll add it to my list to make donating blood a priority so I don't miss any more.

I've also watched the video from Wish 2 and I'll share that as widely as I can to help with that wish.

Wish 12 - Last year I donated to my local food bank , I know it's a problem people face all year round but it's at this time of year that the homeless and hungry are really on my mind. I'll be sure to pop back to the foodbank with a bag full of donations by the end of this month and I'll buy some extra tins on your behalf!

Thank you for sharing your list and also for reminding me to make time for things which I already knew were important but that got pushed to the back of my mind while I dealt with more time consuming but less important things.

Good luck with your list and I'll be sure to have another look through it to see what else I can help you with.

Love and hugs”

Wish 15- Make/sew an I Spy Bag or Twiddle Muff

8 people have offered to make a Twiddle Muff which is brilliant and 8/30
I Spy bags 0/30

So far there haven’t been any I Spy Bags made but that is probably as I hadn’t put the address on the page until now. If you can make one please could you send it to Post Pals, Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN

Wish 16- Read this guide to supporting parents who have lost a child

Thank you to everyone who has read this guide, it’s been read by 536 people, I would love for 1000 people to read it before my birthday

Wish 17- The gift of music

I’m not aware of any donations of instruments from my blog readers but I’m hoping we can find someone who has a cello, violin, flute etc in the loft not being used. My godmother made a very generous donation. I got a little misty eyed reading this email;

“Dear Vikki, We were delighted to see that someone has donated £100 to our charity via JustGiving, with the following message: “This is on behalf of Vikki George's wish list 'my 30 wishes before I'm 30' Sue Morgan.” 

The money will be used to purchase a musical instrument for a child. My colleague Nina Kaye, who I am copying in this message, will contact Lucy Maguire, who leads The Nucleo Project, to see which instrument would be most appropriate. And we will then be in touch to give you more details.

The Nucleo Project, one of the initiatives that the Sistema England charity supports, is a social action programme in London that uses the pursuit of musical excellence as a way to enrich the lives of children, young people and their families. It currently engages over 140 children, aged 2 to 15, from North Kensington. According to the preliminary results of an on-going survey, 46% of these children are elegible for free school meals. 

You can read more about The Nucleo Project here, you will find some photos here and you can watch a video of a recent rehearsal here. Most of the kids in this video have been playing music for less than a year, and some of them barely received their first instruments weeks before the rehearsal.

The initiatives supported by Sistema England are inspired by El Sistema, a programme of social action through music that was founded in Venezuela four decades ago, and that since then has helped save millions of children from poverty. Its founder, Jose Antonio Abreu, has said: "From the minute a child is taught how to play an instrument, he's no longer poor."

We would like to thank you for making this donation possible. You have not only given the gift of music, but you are also helping to forever change the life of a child.

Children involved in these programmes acquire values and develop skills that will forever enrich their lives, even if they do not become professional musicians. While making music in an ensemble, they learn the importance of hard work, discipline, collaboration and striving towards excellence.
Again many thanks. With my best wishes, Reynaldo, Director of Communications
Sistema England”

Wish 18- Helping Dottie

A few people have ordered Christmas cards from Dottie- a big thank you to them. One lady ordered some cards and loved Dottie so much she purchased on from our Dottie volunteer as a ‘buy one, give one’ so her Granddaughter can have an adventure and so can a seriously ill Post Pals child.

Dottie has also been invited to the Cabinet Office!

Wish 19- Run the London Marathon

This wish has been my biggest disappointment, a couple of people have very kindly offered to run but Virgin Marathon are refusing to let someone run on my behalf. So many people are going out of their way to help and they refuse point blank. They have a ballot selection I know but its hardly like my situation is normal, I do have a place in the marathon (and paid the fee), it would make no difference to them if someone was being ‘my legs’ for me.

A couple of people have asked if I could do the marathon being pushed in my reclining wheelchair. Unfortunately this is impossible as I’m far too ill to even get to the start line.

Any ideas readers? I’m thinking if we found the person in charge or very high up then we might stand more of a chance and if enough people ask..

Wish 20-Make/sew/knit/crochet a blanket for someone who is bedbound

Lots of people have offered to help, probably been offered around 20 out of the 30 I was hoping for. I’m sorry I’ve not been well enough to reply and put you in touch with the bedbound person but I will try to do so as soon as possible, although it might be in the New Year (which is tough when your ill so a nice time to receive such a lovely thing). Also if you can knit or crochet then please look at wish 15- Twiddle Muffs

Wish Updates- Wish 1 to 10

Wish 1- Join the bone marrow register

My 30 Wishes has raised awareness of donation and the importance of joining as well as the desperate need for donors from ethnic minorities. It was featured on BBC Surrey radio and included an interview with a man (from an ethnic minority) who donated bone marrow to save someone's life and an interview with someone from the Anthony Nolan Trust.

Rebecca Taylor has kindly signed up through which lets people register up to the age of 55 unlike Anthony Nolan.

Wish 2- 300,000 views on this video

The video is up to 17,000 views, I really need it to go viral to get anywhere near my wish but even one watch is better than none :) Would anyone reading this be able to put it on Upworthy, Buzzfeed or a similar site (it's free and you just need to register but I don't have the energy) please?

Wish 3- Fundraise and purchase a beach wheelchair for visitors to Norfolk
I'm up to nearly £400 donations, I'm really hoping to try and reach £1000 by my birthday towards purchasing a wheelchair to enable any disabled visitor in Norfolk to access the beach for free. Diane from Finest of Norfolk ( is planning a fundraiser in the spring and Francesca ( has kindly offered to do an afternoon of mini massages or manicures in return for donations to Brenda's Beach Chair. Donations can be made via this page

Wish 4- Send 30 pieces of snail mail
5 people have taken on the challenge of sending 30 pieces of snail mail and people on Money Saving Expert are working together to send 30 between them so that’s 6/30.

Wish 5- Give a balloon or flower to someone
My flower and balloon wish got off to a great start with BBC Surrey handing out flowers to 12 people, one bedridden young adult in a nursing home arranged a balloon for another resident, 2 people brought flowers for people they wouldn't normally of, a grandmother gave flowers to her young granddaughter, Helen gave flowers (pictured) to her Grandmother and someone from the M.E forum Foggy Friends received a balloon which cheered her up a lot.

Wish 6- Do a RAOK
This one can't really be put into numbers as most who have done a RAOK did them regularly anyway but it's been nice hearing what you've done and hopefully someone new has done one. I was actually on the receiving end of a RAOK last week when Cam from BBC Surrey turned up with an advent calendar which was lovely and we talked about different ideas for RAOKs for Weds breakfast show. Cam asked me what has been the most touching response or my favourite one, it was tough to choose but someone arranged for a balloon to be given to another resident in the nursing home she is in. This is a lovely thing for anyone to do but she is extremely ill herself, is bedridden and can only whisper a few words a day- yet she used those few words to make someone's day.

Wish 7- Watch Voice's from the shadows
Watching Voices from the Shadows has only recently been able to be done online for free. It actually is one of the most important wishes to me and ideally my wish would be for 30 people to watch it and also to find 30 new health professionals to watch it (I've been looked after by doctors, nurses and carers who have watched it but this was pre 30 wishes). Just before posting this I’ve edited the number after Clare watched it and left a comment on the entry.

So far 6/30 people and 0/30 medical professionals have seen of. It's free to watch online until the end of the year, please watch!

Wish 8- Donate time or an activity to a nursing home/hospital/day centre
Thank you to those who have ordered some crafting items off my Amazon wish list for Burrswood hospital. There are lots of items left which can be seen here

On the activity volunteering side Rhian saw my post and decided to ring her local nursing home to ask if she could play her flute to the residents. She's not played for years and has a seriously illness/disability herself as well as being a Mum to 2 little ones. Both the residents and Rhian had a wonderful time and she is returning to play carols at Christmas. I will do a blog post about Rhian soon.

Wish 9- Watch an sunset or sunrise
Lots of people have told me about sunsets they have seen in the past. I would love to see pictures of sunsets on my birthday on the 21st of Dec but also would like everyone to appreciate even the most simple of sunsets.

Wish 10- Download Spread The Hope charity single
Some of you have been in touch to say you have downloaded the song but it would be great if anyone else could download it, all profit goes to charity. The music video of it can be seen below and details on how to download it is on the website

Thursday, 4 December 2014

Get Surrey article

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Get Surrey have published a lovely article about #my30wishes which you can read here

Thank you to Get Surrey and to Laura who organised it.

Tuesday, 2 December 2014

How would I spend my birthday if I was well for the day?

 How would I spend my birthday if I was well for the day?

My complete fantasy birthday would be to make a snow angel in New York, ice skate in Central Park, see the festive decorations in the windows and go to a Broadway show.

My more realistic-could-actually-do-it-if-well birthday would be...

Waking up feeling NORMAL, to get out of bed and pull the black out blinds off and look out my window. I would enjoy a champagne breakfast downstairs with my family before nipping off to Chessington World of Adventures (we live near by) to tick off an item high on my bucket list-feed a giraffe. On my way to Chessington I would play Christmas music at high volume (I'm very noise sensitive so can't normally). I would have lunch out somewhere, where ever I fancy with no consideration as to whether it has wheelchair access or is loud. I would then do the Harry Potter studio tour (many years the only thing I listened to each day was Stephen Fries recording of the books), squeeze in afternoon tea somewhere before catching a musical. I don't know which one I would opt for, how to choose?! Probably Les Mis as I've now watched Book of Mormon so many times online but one day I want to see every Westend musical.

I would finish the day with a cocktail and stay out until 11.59pm assuming my magic healthy day finished at midnight.

Wednesday, 26 November 2014

Wish 27- Donate unused medication and medical supplies

I feel so lucky to live in a country where I just click a button online when my medication needs renewing and my Mum pops off to the pharmacy, show my card and walks out with hundreds of pounds of drugs. I now get free prescriptions but for a while used the scheme where you pay just over £100 for a  year’s unlimited prescriptions. I know this is so different to lots of other countries and ill people have to sometimes choose between keeping the roof over their heads vs drugs to keep them alive or pain killers vs being able to have dinner. 

Nothing makes me feel guiltier than when my medication is changed and I have lots of used tablets still in their packaging to be thrown away. They are perfect and someone in the world would give anything to have free access to them.

This is why I’m featuring 3 charities which take unused medication and medical supplies (when my Nan died we had things like PEG tubes to donate) and distribute them to places where people are in need.

My wish is for people to donate any unused supplies and raise awareness of this amongst friends and family.

Wish 26- Use your computer space to help find a cure!

Ever wanted to help find a cure for Parkinson's, Huntingdon's, Alzheimer's diseases or some cancers? Now you can, even while your asleep!

This wish is inspired by a lady called Allison who is a friend of a friend. Alison is in her 50's, very positive and also is living with the terminal condition Multiple System Atrophy (MSA).

Allison's husband Nick found research going on into related conditions. This research isn't centred in a lab being done by scientists in white coats and goggles but rather a computer program that is researching the abnormal way proteins fold in these types of conditions (hence the folding bit). This is where you come in...

More people are needed to run this program, it's really simple providing you have enough computer space (I don't) and you don't need to sit with your computer while it runs. To quote Nick "The Folding@home project is open for anybody to join. The only requirement is that they have a reasonably modern computer that is powerful enough to run the simulations, but most (desktop) computers bought in the last five years or so should be okay. Laptops are not particularly suitable as one of the main ways that manufacturers use to extend battery life is by using lower power central processors and graphics systems. Having said that, higher-end and "desktop replacement" laptops are quite capable of running the folding simulations.".

They have added a fun and competitive element to it with having people work in teams and 'earning' points with a leaders board. You can join as an individual or as part of the team and I would love it if some My 30 Wishes supporters would join team Folding4MSA (team number 2508). Let's have Allison know lots of people are helping find a cure in her honour.

If you have any questions, don't ask me! Semi kidding here but Nick is the person to ask. He can be contacted on and the website is

I will post Nicks explanation below, don't be put off if your not technically minded, I'm told it's very simple;

The Folding@home project is open for anybody to join. The only requirement is that they have a reasonably modern computer that is powerful enough to run the simulations, but most (desktop) computers bought in the last five years or so should be okay. Laptops are not particularly suitable as one of the main ways that manufacturers use to extend battery life is by using lower power central processors and graphics systems. Having said that, higher-end and "desktop replacement" laptops are quite capable of running the folding simulations.

All that is involved is for volunteers (Donors) to go to the website:

and click on the "Download" button at the top. This will offer to download and install the most suitable "Client" for the machine. Clients are available for Windows, Apple Mac, Linux and now there is one that runs entirely within the Google Chrome browser.

Next, the Donor can choose a username (not required as they can fold under the "Anonymous" username) and/or a team to join. The teams are purely a bit of fun and to add a sense of community and competition to the project.

The Donor can then set the Client to use as much or as little of the computer's power as they wish, from only folding when the computer has been idle for a few minutes right up to using the full power of the machine. If the Client is set to use the full power the user may notice significant slowdown of other programs if they try to run them on the machine at the same time.

Finally the Donor just has to press the "Fold" button to set things off. It is as simple as that!

When installed, the Folding Client program connects to work allocation servers at Stanford University and downloads "Work Units". It then runs the simulation on the Work Units (which may take anything from a couple of hours to a few days depending on the client settings and the power of the computer) and returns the results to the servers at Stanford. The client then automatically downloads another work unit and so on.

Donors are allocated points for each Work Unit completed within the required time and if the Donor is a member of a team these points are also added to the Team's total. To maximise their points score the Donor can register for a "Passkey" which is a unique code for that Donor and this then enables "Quick Return Bonuses". These QRB's are extra points awarded for completing the Work Units faster than expected. The faster the Work Unit is completed the bigger the bonus.

As the simulations are quite compute-intensive the computers running them can get quite warm and use a bit more electricity than they would just using desktop programs, but this is normal. The QRB bonus system encourages Donors to leave their computers switched on and complete the simulations as quickly as possible in order to score the maximum points, hence the "Even while you sleep..." campaign.

Obviously we would love any new Donors to join team 2508, "Folding4MSA" but they are free to join any team they wish or even create their own. The name of the team actually has no bearing on what Work Units are assigned to the Donor's computer although the Donor can specify a preference in the Client program for the type of projects that they would like to work on. This, however, is purely a preference and the servers are free to allocate any suitable Work Units to any machine. Currently there are no Folding@home projects specifically targeted at MSA. Most projects are to do with Parkinson's, Huntingdon's and Alzheimer's diseases, as well as cancer, but the research is still relevant to MSA and there may be MSA-specific projects set up in the future.

Joining team 2508 is a way of the MSA community coming together with a team spirit to do what they can for research and raise awareness of the condition.

As part of my contribution to the MSA community I was intending to build a very powerful computer specifically for running the folding simulations and setting up a team for MSA. I built the computer (which is running very well) but before setting up a new team I decided to see if a team had been set up for MSA already and join that. Searching the Folding@home team list I found just one team for MSA, team 2508 which was then called "TEAM CURE MSA". The team itself was set up in about 2002 by an American scientist, engineer and artist called Ray Strand who was diagnosed with MSA about that time. Unfortunately Ray passed away in 2008 as a result of his MSA, and after that the team seemed to peter out. Through my research I managed to contact Ray's widow, Clare, who is a senior administrator at an American University and asked her if she would be agreeable to me taking over the team. She was delighted with the idea and although it appeared that Ray had taken the team administration login details to his grave, with the Clare's help and that of one of the Folding@home administrators I was able to get administrative control of the team. One of the first things that I did was to change the name of the team to "Folding4MSA" as I felt that it was "trendier" and easier to remember. This was one of the first teams set up in the Folding@home project and there are now over 220,000 teams (most of which are dormant unfortunately), so having team number 2508 carries quite a bit of kudos!

I have not managed to set up a homepage/website for the team at the moment, but that is next on the list of to-do's!

Wednesday, 19 November 2014

Describing severe M.E in poetry

I've always loved writing poems and they are mostly light hearted, infact I won the iPad I'm typing this on after writing a poem about a family car (you can read it here) for a competition. I find writing very therapeutic though and started blogging years before the word 'blog' came about. Mostly I would just write a line or two about what's happening as that's all I could manage but sometimes I would write a poem although it often felt like the poems wrote themselves.

Recently I came across one called 'Her', it jumped out at me as I wrote it when I was 17, I never thought I would need to add that 'she' has taken all my 20's away from me and I'm staring at the big 3-0 from bed. This is the poem;


She dresses in black
From head to toe
And follows me around
Wherever I go

My heart still beats
My lungs still fill
But she stole my life
Against my will

Left is an empty shell
Vikki has now gone
All thanks to 'her'
This is going on to long

She haunted my childhood
She stole my teen years
Left me like a baby
Detaching me from peers

She has done all this
Over a long time
But strangely enough
She has committed no crime

For She is really just M.E.

This is another poem which almost wrote itself, I was around 18 at the time and someone had really annoyed me by saying my parents should just use tough love to cure me (yes tough love cures Neurological conditions....), it just flowed out in my desperation to explain what life was like (even though I didn't send it to the person). Sadly much applies today still.

'Can you imagine?'

Can you imagine waking up not able to move, not even a finger,
Wiggle a toe, move an arm or a leg?

Can you imagine laying there not able to move, but vomiting,
Being too scared to breathe, choking till your parents roll you over?

Can you imagine being so ill you can hear the voices of your parents but not know who they are?
Or hear English but not understand a single word?

Can you imagine going months on end without seeing anyone outside the family,
Not a single soul, not even a milkman or passerby?

Can you imagine being in so much pain that you just want to give up,
Feeling like there are thousands of hot pins sticking in you?

Can you imagine going years and years with a continuous migraine,
Not easing for a minute or a second of your life?

Can you imagine going over 8 months without sitting up or propped up,
Feeling so dizzy that you can't see straight?

Can you imagine feeling like you are moving, falling over backwards,
And at the same time rotating you sideways all the time?

Can you imagine going over a year without going downstairs in your own house,
Not seeing the living room, kitchen, garage, or garden?

Can you imagine life like this?

I don't need to imagine; after all, I live like this every single day.

Still think M.E. is just about feeling tired?

Monday, 17 November 2014

Thank you

Photobucket Pictures, Images and Photos

Thank you everyone who is helping make my wishes come true. I've still got a long way to go to tick off the list so please keep passing my blog around and asking friends to help. At the end of the week I will post an update on each wish so keep your eyes peeled.

Wish 24- Get a carbon monoxide alarm

We used to have detector dots by our boiler which change colour if carbon monoxide is being leaked, you have to check them to see if there is a leak (CO is colourless and odourless). My Dad got rid of them early 2008 and brought a £20 alarm instead (which came with a smoke alarm too) and didn't think too much of it.

I was at my best point in 2008 and Mum and Dad did a very rare thing and went away for a night (stocked my bedroom with everything I needed). Our alarm went off late at night, turns out our boiler was leaking CO. Symptoms of CO poisoning include vomiting, headaches, drowsiness. Guess what daily symptoms I have caused by my ME...

I would never of attributed symptoms to our boiler and gone to check the 'dots', seeing as carbon monoxide poisoning can be fatal it turned out to be the best £20 Dad had ever spent. The alarm sounded before I developed any problems and we all lived happily ever after. Would we of had that happy ever after if my Dad hadn't brought an alarm?

My wish is for 30 people to get an alarm if you don't already have one, I've seen suggestions of taking them on holiday with you after a brother and sister died on holiday. You can buy them for as little as £5 online (and don't forget to check the batteries in alarms regularly).

To learn more visit

Edit-Funnily enough but complete chance I have added this wish on the first day of CO awareness week!

Saturday, 15 November 2014

Could you be a fairy godmother?

I pushed myself really hard for a Post Pals project and am really not good at the moment, yet I'm conscious that time is really flying with my birthday rapidly approaching and I still have so much more wish awareness to raise!

I wondered if anyone could help by being a 'fairy godmother' please, taking on one of the wishes and trying to get people to grant the wish. For example posting the link about 'know the glow' (how a picture can save a child's life) on a parenting forum or asking a sewing group if they would make some Ispy bags. If you could be a fairy godmother I would be eternally grateful. Please shout on fb or on my email

Thank you to Diane and Laura who have been working as fairy godmothers.

Friday, 14 November 2014

Raising awareness with parents

There are thousands of parenting sites on the internet, from forums for parents, 'Mummy Bloggers' to Facebook groups connecting local families. Could anyone help My 30 Wishes please by sharing these links on any forums/blogs/groups?

Simply by posting them hopefully one less disabled child will be upset as they haven't been invited to a party or saving a child's life.

Please let me know if you post them :)

Know The Glow and save a child's life

Read this short guide on what to say and not to say to parents who have lost a child

Invite a child/family with special needs to a party

Thank you!


Thursday, 6 November 2014

Beach wheelchair clarification

My local paper is supporting My 30 Wishes which is fantastic and I'm very grateful. However I'm on the front page talking about my biggest wish- to raise funds for a beach wheelchair. Only it says it's to buy myself a chair so I can visit my favourite beach in Norfolk. I just wanted to clarify that the chair isn't for my personal use, it is for ANY disabled visitor to be able to enjoy the beach in the chair free of charge. I plan to turn it into a charity called 'Brenda's beach chair' (named after my Nan).

There's more about my wish for a chair Here and you can donate Here

Tuesday, 4 November 2014

Spread the Hope and a big Thank you

Hi Everyone, I'm sorry for not updating or replying to emails. I was in a bad patch ME wise anyway then completely over did it on Friday, I've only really woken up today!

I wanted to write some thank you's but first things first

Wish 10- for people to download Spread the Hope charity single. Money is split between 4 charities including Post Pals and it has been written by my 'best bed friend' Jessica. She wrote the song during a 4 YEAR hospital admission with v.severe ME. It's an amazing achievement to have it released. Details are on the site

Secondly a big thank you to everyone who has been reading, sharing and wish granting! I had a lovely email after a donation from Sue which I will share soon, the childhood cancer awareness post is up to 745 reads which means 745 more people now know the signs and seeing as 10 children in the UK are diagnosed with cancer each day the reader might be the one to help them.

Thank you again to everyone and sorry for not replying to emails or sending thank you's- I will as soon as I can.

With love,


Thursday, 23 October 2014

Wish 5 update

Wish 5 has got off to a good start thanks to BBC Radio Surrey.

Yesterday the breakfast show kicked off my wish list by handing out 12 flowers to people in Woking (donated by Flowers By Rosemary) and asking them to pass them onto someone in need of a smile. People were asked who they were going to give it to and why, reasons included someone who had recently lost their horse, a lady who is caring for her seriously ill children and a homeless person.

A balloon has also been sent thanks to a kind friend who is very poorly herself. The fact she is bedridden in a nursing home hasn't stopped her helping another resident (she is too poorly to know any residents but asked staff to pass it onto someone in need of a smile).

So with the 12 flowers and balloon that's 13 out of my goal of 30.

Would any flower or balloon companies be willing to help in return for a plug and link? Please ask any you know.

Thank you BBC surrey and thank you to my friend

Sunday, 19 October 2014

Will I get better? Is there any treatment?

Last week someone asked if they could ask me what my prognosis is. To anyone reading this please feel free to ask questions, I don't mind at all.

Will I get better is the big question, the simple answer is I don't know. Long term severe M.E is very different from mild/moderate M.E or for those who only have it for a few years. With long term severe M.E some get better, some improve, some don't improve and a small % die from it.

No one has a crystal ball, I don't expect to make a full recovery but I will settle for independent and out and about. I plan to move out, have children, finish my book (I might of finished it by now if I hadn't deleted half of it by mistake!) and live life. I don't expect to ever know what it feels like to feel well or to be able to do what ever I like but I will fight this all the way. Full recovery is rare but does happen, when I'm in hospital I sometimes have a visit from a lady called Hannah who was bedbound for 12 years, she strolls in and tells me how she's taken up Zumba and frequently swims 30 lengths. On the flip side my lovely friend Emily passed away from severe M.E.

There is no cure for M.E but there are things that can help. I do daily physio, try my best with pacing (it's hard as my instinct is to fight back rather than lay peacefully resting)/, take a cocktail of medication to control some symptoms and battle the bloody NHS for inpatient funding. Now days I have the most amazing and understanding doctor (who treated Hannah) and team at the hospital and they feel admitting me for 6 months could get me better, not 100% but living life out of bed, able to walk and go out and about. As always it comes down to cost. £50,000 although to be honest if they even gave me half I could make some serious progress. It feels like such a lot of money but in the grand scheme of things is it? There is another treatment I would like to try which the top severe M.E expert in the world has found to be the most effective and that is simply IV saline but it's not a treatment available in the UK to people with M.E (the hospital I go to is small and can't put a picc line in to have it at home). There's a research project going on into IV saline therapy in M.E in Canada but I can't hop over there and it has at least 4 more years until it finishes and can publish results.

It's very frustrating, firstly having a condition which is misunderstood (some people don't understand it and think it's mental health in the same way MS was one hysterical paralysis despite ME being classed as Neurological by the World Health Organisation) and secondly not being able to get funding for what help is available.

However in short there is hope, I'm a lot better than I used to be and will never give up fighting.

"As long as I dare to dream of better things to come, I can face tomorrow with a smile"

Thursday, 2 October 2014

Does it count?

Quite a few people have asked me about my wishes and if something they are doing 'counts'.

The idea of the list is to ask people to do the things I can't do and which they wouldn't otherwise be doing. For example wish 1-I'm trying to find 30 new people to join the bone marrow register rather than finding 30 people who registered at some point in the past. If it was in the past it doesn't count as my wish but it does count as a wonderful thing you've done :) The same for if you were inviting someone with special needs anyway or saw a sunset in the past.

I've been very touched by responses so far, and it is certainly adding some positivity  to my life.

Thank you!

Wednesday, 1 October 2014

Wish 22- Donate small items to a non profit hospital

Edited to add the link to an Amazon Wish List with the items the hospital needs, they will go directly there. Items start from £1

Burrswood is a wonderful hospital which I go into a couple of times a year (I'm fighting with the NHS for funding for a long stay). It's a special place, set up as a Christian hospital it's aim has always been to help the whole person and it does it well. It's used by people of all (or no) faith, of all ages and conditions. It does a mixture of respite, physical rehab, end of life care and for people in need of support. Over the years it has come to specalise in severe ME too and is the only place I have ever been where people understand it. It's the only place in the world my parents feel able to leave me and relax knowing I am being well looked after.

Being small and non profit there is always a lack of funds. When able I have hydrotherapy which really helps and is enjoyable too. I remember being down at the pool once and taking in the people around me. While waiting I was talking to a man who had MS, he said the local MS group come in weekly for sessions,there were adults with learning disabilities in the pool while we were talking and after I came out a very severely disabled man was being lowered into the water on the special hydro trolly bed, it's also used by those with mental health problems as a way to relax. All these people including myself couldn't go along to our local pool but were able to benefit from hydrotherapy thanks to Burrswood.

I asked the head physio and the occupational therapist if there were any items or equipment needed. Although they are always in need of expensive equipment they would love and put to good use any of the following (I have posted links as examples, they might be cheaper on other sites);

-Comfort grip magnifiers (for people with visual problems), example £11.95
-Pegboard with round pegs (for upper limb therapy), example these are £51.47 but I'm sure you can get similar for a lot less
-Arm support therapy (for correct positioning following strokes) example £35.99
-Large book chair (to hold books for those with weak limbs), example £11.95
-Posey bedfellow (comfort/positioning for people with severe ME or strokes), example £282.78
-Twiddle muffs, either purchased or handmade (for dementia/anxiety) Also listed under my wish here example £3.50 and also listed under my wish here example £29

Physio list coming soon

If anyone could help it would be fantastic, thank you. The address to send them to is:
Alison Cornford, OT, Burrswood Hospital, Groombridge, Tunbridge Wells, Kent, TN3 9PY

Beach chair update

The beach chair update

Original post

I've not launched my wish list yet but a friend put me in touch with Diane who runs Finest of Norfolk. We spoke about Norfolk and the need to make the beaches accessible. Diane lives in Heacham (Hunstanton) and suggested we try for a chair there too, it would mean there is a chair at both 'ends' of Norfolk and with the Wells chair in the middle

This would be great but means the fundraising target in now £12,000! I'm in the process of setting up a trustee bank account and somehow hopefully we will reach £12,000 and Brenda's Beach Chairs can create smiles and happy memories next year. We are currently at £25 (thank you to everyone who donated) which leaves £11.975 to go.

If you can donate, hold a fundraiser or help in anyway please shout. If you are a business I can post a link as a thank you on here.

Donations can currently be made via our Go Fund Me pageAnd soon by cheque or bank transfer (I will post when the Brenda Beach Chair fund account can accept cheques).

Thank you, my Nan Brenda would be so pleased,

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Once upon a time a little girl ran free, though that wasn't always to be....

Aged 11 a virus came along and caused havoc, over the next 5 years things slowly got worse until aged 17, paralysis set in, speech, walking and all abilities were stolen and life became an existence confined to a bed in a blacked out room.

All special occasions including my 18th, 21st and 25th birthdays were celebrated in bed and the wish for recovery made when blowing out candles never came true.

Life isn't all doom or gloom, yes I may have Severe M.E but every day brings about something to have a giggle about and I remain positive. There is one thing I've been struggling to find a positive in though beyond 'I survived' and that's my up coming 30th birthday on the 21st Dec 2014. I never believed that I would still be in bed for it, truly believing I would be fully better by the landmark.

I kept seeing '30 before I'm 30' lists around and my heart would sink thinking how I've not ticked off my first legal drink, a driving lesson or first job yet. It got me thinking of what things I would put on the list if I had one and I wondered how could I achieve them. The answer isn't I can't achieve them myself but the idea came to me, to ask YOU to help!

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About me

I'm Vikki and live in Surrey, England. I suffer from severe M.E and related conditions which has meant I've spent the last 13 years in bed, varying from being able to have the occasional trip out in a wheelchair to being completely paralysed in hospital. It's a neurological condition with a huge range of symptoms but sadly some people still don't believe it's real, even though people have died from the condition including my good friend Emily. It's why I am determined to speak out and raise awareness of it.

From bed I run a little charity I set up called Post Pals which sends cards, letters and gifts to seriously ill children, the idea came after finding receiving cards helped me cope with my own illness. When able I like doing crafts in bed, listening to audiobooks, watching musicals online (virtual trips to the West End or Broadway) and having a good natter, however the majority of my time is spent curled up in total darkness and silence.

There is no cure, just symptom management- I take a big cocktail of drugs ranging from morphine to anti sickness tablets and I've been fighting for 4 years with the NHS for the funding for a 6 month stay in an inpatient hospital specialising in severe M.E but they keep finding excuses. Some people get better, some don't and it's impossible to say who will or won't but I will keep fighting! Getting the funding would dramatically increase my chances but who knows if the purse string holders will have a change of heart!

Often with ME what you see isn't what you get, you tend to see people only on their good moments and not the huge crash that comes after. A perfect example is this video of me talking about M.E on This Morning, although I was doing a lot better back then you didn't see me traveling laying down, being taken to the toilet by my Mum and transferring out of my chair and whipping off my sunglasses at the last minute (despite it being a dull winters day) or my immediate need to lay down after, and certainly not the 6 weeks it took to recover from.

I hope this blog raises awareness of the condition as well as putting some positive back into my life- thank you for reading and taking part.

I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you

Wednesday, 24 September 2014

Wish 30- Do something you have always wanted to do

My final wish is a simple one- do something you have always wanted to do.

We all have something we want to do, be it learn a language, visit a certain area, get up to watch a sunrise, make up with someone you fell out with, dance in public like no one is watching or buy a fancy red dress even if you don't have an event to wear it to.

My wish is for you to question yourself why you haven't done it and what can you do to make it possible.

Don't have time? How about cutting out watching Eastenders, that would give you an extra 99 hours of time a year not including hour long specials!

Can't afford it? Giving up your coffee (average price £2.20) on the way to work will give you £556 towards your dream in one year.

Fallen out with someone? How would you feel if they died tomorrow and you hadn't made up? If you would have regrets then swallow your pride and pick that phone up.

Want to dance like no one is watching? Do it! So what if people look at you, chances are they aren't thinking much about you and in the grand scheme of life so what if they do?

Read The Traveling Red Dress site then buy that dream dress and swish around it.

In the words of Alice Pyne One life- live it

I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you

Friday, 19 September 2014

Wish 25- Have my wish list trend on Twitter

Quite a straight forward wish this one, it's not so I can claim my list trended but rather so more people will see it and hopefully take part. The more people hear of it, hopefully the more will sign up to donate bone marrow, donate towards a beach chair or do an act of kindness.

I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you

Saturday, 6 September 2014

Wish 23- Take someone out who couldn't go otherwise

For lack of a better word, being housebound sucks. The whole world keeps rotating yet your world grinds to a complete halt. I am lucky to have 2 fantastic parents and the moment I am feeling better they will do what ever it takes to get me out, other housebound people aren't do lucky. Some are housebound just because they don't have the help or transport. When you have been stuck indoors for a long time a simple trip to a local park, garden centre or cafe can give your spirits a huge boost and getting to choose things in a supermarket rather than relying on others can be surprisingly enjoyable! My parents once took a neighbour to visit the lady who raised her, it was a pain to do as it was a long drive but the way the 2 ladies faces lit up when they saw each other is something my parents won't forget. Years ago we also took a very distant relative out of the nursing home he was living in for a drive and an Icecream, he smiled the entire time, anyone would of thought we had taken him on a round the world trip!

My wish is for people to help someone experience the joys of the outside world again.

Picture of my first time in our garden for years

I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you

Thursday, 4 September 2014

Wish 21- Invite someone with special needs to a party

Growing up I had a very good friend with Cerebral Palsy (caused both physical and learning disability) and Epilepsy. When it came to sending invitations to my 6th birthday party naturally I invited my friend. I don't remember inviting her as it wasn't a big deal but her Mum still remembers to this day opening her daughters school bag and finding her first ever invitation to a party from a child who wasn't in the special needs unit.

Sadly it seems common that children with special needs and/or their family don't get invited to parties. I remember the heartbreak of a girl I know when every single member of the class was invited to a party except for her, just because she uses a wheelchair. I would like to think this is rare but it's not.

My wish is for people to consider inviting someone with special needs to a party your organising. Be it a children's party or a get together BBQ.

For the first party my friend came to her Mum stayed and as our parents became friends we learnt to make tiny adaptions to make enjoying the party without her Mum possible, for example I went to a water park for my 9th birthday and my Nan came along to stay in the shallow water with my friend while the other adults took us on big slides and we frequently returned to the shallows. Adaptions might be simply letting the child have use of another room to chill out in if things become too much or making sure the venue has wheelchair access.

If there is a child in your child's class and your not sure if or how they could manage the party then just talk to their parent. Often people get so worried about offending someone or saying the wrong thing so they ignore the family or situation.

As for my friend and I? She came over for my 28th birthday and we ate cake and chatted together :)

Connor enjoying the limbo game at a party I organised, the fact he uses a wheelchair makes no difference
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Stevie also enjoying the party, his parents said they rarely get invited to events as Stevie has Autism.


I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you

Wednesday, 3 September 2014

Wish 20- Make/sew/knit/crochet a blanket for someone who is bedbound

Life is hard when your in bed either all or the majority of the time, and smiles can be few and far between. One comforting thing though is to have a nice blanket or quilt to curl up with or have on your bed. I remember the first blanket I was given by a little group when I became bedbound and the comfort it brought, when I was isolated from the world I just had to look or feel it to know someone cares.

I would love for everyone who is to receive a blanket of some sort but will start by aiming for 30! If your able to make and send one please drop me a line on and I will match you up with someone desperately in need of some comfort.

Thank you

<I>I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you </I>