How do you make people aware without boring them?

How do I raise awareness and tell people what ME is really like without boring them and giving them information they are not interested in?

When I asked this question on facebook an ME sufferer replied saying;  "What about an obstacle course consisting of having to try and walk through porridge in a weighted jacket while bright lights and loud noises assault them, etc, then get to the end and have a sign saying 'now imagine doing that again while in a lot of pain. That's how it feels just to walk to the kitchen with ME'.?"  That's a great idea wish it was practical.

I want people to know basic facts and accept that the illness is what sufferers say that it is and to accept the impact it has on our lives.  There are many serious illnesses that affect people really badly, I don't want people to think that I am making a big fuss or saying that what I have is worse than other illnesses.  ME is not normally life threatening, but it is seriously life altering and we have to live with that every day.  I have lived nearly half my life with this illness and still struggle to accept and understand it myself, so I can't really expect people that it doesn't affect to be interested or understanding.

I wanted to find a list of basic symptoms, but again that doesn't really show how we feel and many of the symptoms other people have, but its the having many of them all the time and at the same time that makes things so hard and that fact that symptoms can vary greatly even in the same day.  personally I never feel well and don't really have 'good days' although I do push myself to do many things and suffer for it, both at the time and afterwards.

I was really ill yesterday and hardly able to get out of bed and already feel quite ill today, but need to push on.  I got in a bit of a strop as I felt people weren't taking the fundraising and awareness seriously.  I have raised £280 which is great, but when £100 of it is from my husband it feels like it is us that are doing all the work.  ME already costs us a huge amount in day to day living and it upsets me that people can't be bothered to donate even a tiny amount to show their support.  I know times are hard and that some people can't afford to give and I do accept that and would never pressurise anyone to give, but there are people who just don't seem to care and who can afford it.  I know we all have demands all the time to donate money and we can't give to everything, but it feels like an personal insult to me and ME from some people. The money I have got is mainly from people I don't know that well or from people who can't really afford it, so I am touched by the donations and you learn who cares.

Personally I think everyone should read Diana's Story, but its out of print, although is available on Kindle also Surviving ME also out of print :-( so not very helpful.  Another well presented and shorter book is Can I tell you about ME/Chronic Fatigue and it is recommended for friends, family and professionals.  I have copies of all these books if people want to borrow them and look after them and return them and I will take them when I meet with people to raise awareness.

ME Symptoms

M.E. affects people in different ways and to differing degrees. It’s a very variable
illness and symptoms can change over time. 

Fatigue
• persistent and overwhelming tiredness, which is experienced as both
physical and mental exhaustion
• is not significantly improved by resting
Feeling generally unwell
• having flu-like symptoms (“general malaise”)

Recurrent sore throat
• with or without swollen glands

Pain
• aching muscles or joints
• nerve pains or pins and needles
• headache or migraine
• twitching muscles or cramps
• abdominal pain (stomach or bowel problems)

Sleep disturbance
• unrefreshing sleep
• difficulty getting off to sleep
• waking for long periods in the early hours
• light, dreamy, restless sleep
• sleep reversal (eg. sleeping from 4am till midday)
• hypersomnia (sleeping for a long time)

Concentration, thinking and memory
• reduced attention span
• short-term memory problems
• word-finding difficulties
• inability to plan or organise thoughts
• loss of concentration
– all often described by people with M.E. as “brain fog”

Mood
• frustration
• anxiety
• panic attacks
• low mood, depression
• mood swings and irritability

Problems with the nervous system
• poor temperature control
• dizziness on standing up
• hyper-sensitivity to light and sound
• sweating
• loss of balance

Digestive problems (which can also be Irritable Bowel Syndrome)
• nausea
• loss of appetite
• indigestion
• excessive wind/bloating
• cramps
• alternating diarrhoea and constipation

Intolerance eg:
• odours
• some foods (eg. dairy or wheat)
• some medications
• alcohol
• other substances

M.E. fatigue is very different from ordinary tiredness. Feeling extremely tired or exhausted most, or all of the time, is one of the main symptoms of M.E. This feels very different from ordinary tiredness. Simple physical or mental activities, or combinations of activities, can leave you feeling shattered or struggling to function. You can also experience an increase in other symptoms. You may feel the impact straightaway but it can typically take a day or two to kick in. This is a key feature of the way M.E. affects people.

Women often find that symptoms worsen at different times in their menstrual
cycle.

Taken from Action for ME

I have all these symptoms except for the sleeping a long time, I sleep very little.

Finally as I am struggling to function now and need to lie down before I fall down!

Here is a demonstration of the affect on functioning;

The HFME 3 Part M.E. ability & severity scale

PART 2 – COGNITIVE ABILITY SCALE

Copyright Jodi Bassett 2005 to 2010. Taken from www.hfme.org

FULLY RECOVERED

100%

An unrestricted level of cognitive functioning is possible.

VIRTUALLY RECOVERED

90%

A high level of cognitive functioning is possible; around 90% of pre-illness level. Able to cope on a cognitive level with full-time study or work without difficulty and enjoy a full social life.

MILDLY AFFECTED

80%

A high level of cognitive functioning is possible, around 80 - 90%. Minimal restrictions apply for activities that demand a high standard of cognitive functioning. Unable to manage full-time study or work without difficulty in areas that place an excessive demand on a cognitive level.

70%

Cognitive functioning is at/or around 70 - 80%; a daily cognitive activity limit is clearly noted. Unable to work fulltime where high demands are made on a cognitive level, but can work fulltime in less demanding jobs if hours are flexible. Some restrictions on social life.

MODERATELY AFFECTED

60%

Cognitive functioning is at/or around 60% ; unable to perform tasks which are excessively demanding on a cognitive level, but can complete lighter activities for 5 – 7 hours a day although rest periods are required. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social life may be moderately affected.

50%

Cognitive functioning is at/or around 40 -50%; unable to perform tasks which are excessively demanding on a cognitive level, but able to work part-time in lighter activities for 4 - 5 hours a day (or perhaps longer at a reduced quality level) if requirements for quiet and resting are met. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social activities with environments that are quiet and not mentally challenging are possible.

MODERATELY TO SEVERELY AFFECTED

30%

Cognitive functioning is reduced to around 30 - 40%; unable to perform mentally challenging tasks, but able to complete simpler cognitive tasks (study or work) for 3 – 4 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration and cognitive ability are significantly affected. Following the plots of some TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.

20%

Cognitive functioning is reduced to around 20%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 2 – 3 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected. Following the plots of TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.

SEVERELY AFFECTED

10%

Cognitive functioning is reduced to around 10%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 1 – 2 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than half an hour at a time may be extremely difficult. Following the plots of some TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible on a very restricted basis.

5%

Cognitive functioning is reduced to around 5%; unable to perform even moderately mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for about an hour or so each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than 10 to 15 minutes at a time may be extremely difficult. Following the plots of TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible occasionally for short periods.

VERY SEVERELY AFFECTED

3%

Cognitive functioning is reduced to less than 5%; able to complete simple cognitive tasks for about 10-30 minutes each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are severely affected. Concentration may be extremely difficult. Only short periods of TV, radio or reading are possible. A friend can be seen for approximately 10 - 30 minutes a week.

1%

May be able to complete simple cognitive tasks such as talking, listening to speech or reading (with difficulty) for several 2–10 minute periods throughout the day if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are very severely affected. Concentration may be extremely difficult. There may be an inability to maintain full consciousness throughout the day. No TV is possible but quiet music or an audio book may be listened to for short periods. A close friend or family member can be seen for a few minutes, occasionally.

PROFOUNDLY SEVERELY AFFECTED

0.5%

Concentration, memory and other cognitive abilities are extremely and severely affected. Achieving even a low level of concentration may be extremely difficult or impossible, and there may be a high degree of cognitive confusion as a result. No TV or radio is possible. There may also be a difficulty maintaining consciousness for more than a few minutes at a time. Receiving visitors (even close family members) is almost impossible or impossible. Talking, reading or writing more than the occasional few words is often impossible.

The HFME 3 Part M.E. ability & severity scale

PART 2 – COGNITIVE ABILITY SCALE

Copyright Jodi Bassett 2005 to 2010. Taken from www.hfme.org

FULLY RECOVERED

100%

An unrestricted level of cognitive functioning is possible.

VIRTUALLY RECOVERED

90%

A high level of cognitive functioning is possible; around 90% of pre-illness level. Able to cope on a cognitive level with full-time study or work without difficulty and enjoy a full social life.

MILDLY AFFECTED

80%

A high level of cognitive functioning is possible, around 80 - 90%. Minimal restrictions apply for activities that demand a high standard of cognitive functioning. Unable to manage full-time study or work without difficulty in areas that place an excessive demand on a cognitive level.

 

70%

Cognitive functioning is at/or around 70 - 80%; a daily cognitive activity limit is clearly noted. Unable to work fulltime where high demands are made on a cognitive level, but can work fulltime in less demanding jobs if hours are flexible. Some restrictions on social life.

MODERATELY AFFECTED

60%

Cognitive functioning is at/or around 60% ; unable to perform tasks which are excessively demanding on a cognitive level, but can complete lighter activities for 5 – 7 hours a day although rest periods are required. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social life may be moderately affected.

 

50%

Cognitive functioning is at/or around 40 -50%; unable to perform tasks which are excessively demanding on a cognitive level, but able to work part-time in lighter activities for 4 - 5 hours a day (or perhaps longer at a reduced quality level) if requirements for quiet and resting are met. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social activities with environments that are quiet and not mentally challenging are possible.

MODERATELY TO SEVERELY AFFECTED

30%

Cognitive functioning is reduced to around 30 - 40%; unable to perform mentally challenging tasks, but able to complete simpler cognitive tasks (study or work) for 3 – 4 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration and cognitive ability are significantly affected. Following the plots of some TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.

 

20%

Cognitive functioning is reduced to around 20%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 2 – 3 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected. Following the plots of TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.

SEVERELY AFFECTED

10%

Cognitive functioning is reduced to around 10%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 1 – 2 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than half an hour at a time may be extremely difficult. Following the plots of some TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible on a very restricted basis.

 

5%

Cognitive functioning is reduced to around 5%; unable to perform even moderately mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for about an hour or so each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than 10 to 15 minutes at a time may be extremely difficult. Following the plots of TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible occasionally for short periods.

VERY SEVERELY AFFECTED

3%

Cognitive functioning is reduced to less than 5%; able to complete simple cognitive tasks for about 10-30 minutes each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are severely affected. Concentration may be extremely difficult. Only short periods of TV, radio or reading are possible. A friend can be seen for approximately 10 - 30 minutes a week.

 

1%

May be able to complete simple cognitive tasks such as talking, listening to speech or reading (with difficulty) for several 2–10 minute periods throughout the day if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are very severely affected. Concentration may be extremely difficult. There may be an inability to maintain full consciousness throughout the day. No TV is possible but quiet music or an audio book may be listened to for short periods. A close friend or family member can be seen for a few minutes, occasionally.

PROFOUNDLY SEVERELY AFFECTED

0.5%

Concentration, memory and other cognitive abilities are extremely and severely affected. Achieving even a low level of concentration may be extremely difficult or impossible, and there may be a high degree of cognitive confusion as a result. No TV or radio is possible. There may also be a difficulty maintaining consciousness for more than a few minutes at a time. Receiving visitors (even close family members) is almost impossible or impossible. Talking, reading or writing more than the occasional few words is often impossible.

I would say I am at about 20% on both scales.

and one to show severity of symptoms

The HFME 3 Part M.E. ability & severity scale

PART 3 – SYMPTOM SEVERITY SCALE

Copyright Jodi Bassett 2005 to 2010. Taken from www.hfme.org

Note that symptom severity on a scale of one to ten means:

Mild Symptoms = 1 to 3. Symptoms present but at so low a level one can forget they are there most of the time.

Mild/moderate symptoms = 4 to 5

Moderate symptoms = 6 to 7

Very Severe Symptoms = 8

Severe Symptoms = 9

Extremely severe symptoms = 10. Totally non-functional and also possibly crying out or moaning uncontrollably and/or being near delirium. Completely overwhelmed with pain and suffering. The face muscles may be slack, the body partly or completely paralysed, and thinking or communicating may be impossible. As far as the patient is concerned, being eaten alive by a tiger could not hurt any more, or feel any worse. Absolute agony.

FULLY RECOVERED

0/10

No symptoms.

VIRTUALLY RECOVERED

1/10

No symptoms at rest. Mild symptoms on occasion following strenuous physical or mental activity but recovery is complete by the next day.

MILDLY AFFECTED

2/10

         Mild symptoms (1 to 3) for several hours or days following strenuous physical or mental activity.

3/10

Mild symptoms (1 to 3) at rest, worsened to mild/moderate (4 or 5) for several hours or days following strenuous physical or mental activity beyond the person’s limits.

MODERATELY AFFECTED

4/10

Mild - mild/moderate symptoms (1 to 5) at rest, worsened to moderate (6 or 7) for several hours or days following physical or mental activity beyond the person’s limits.

5/10

Mild/moderate symptoms (4 or 5) at rest, consisting of mild/moderate pain and/or sensations of illness/dysfunction throughout the body and brain for some parts of the day, with increasing moderate symptoms (6 or 7) for several hours, days or weeks (or longer) following physical or mental activity beyond the person’s limits.

MODERATELY TO SEVERELY AFFECTED

6/10

Moderate symptoms (6 or 7) at rest with moderate pain and/or sensations of illness/dysfunction throughout the body and brain for significant periods of the day; increasing moderate (and occasionally severe – level 8) symptoms for several hours, days or weeks or months (or longer) following physical or mental activity beyond the persons limits.

7/10

Moderate (6 or 7) and occasionally severe (8) symptoms at rest. There is moderate pain (6 or 7) and/or sensations of illness/dysfunction throughout the body and brain for significant periods of the day, increasing to moderate and sometimes severe symptoms for several hours, days, weeks or months (or longer) afterward.

SEVERELY AFFECTED

8/10

Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.

8.5/10

Severe symptoms (8) at rest and following even trivial physical or mental activity with a recovery period of hours or days, or as much as several weeks or months or longer. There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain for all but a few hours of the day. In some patients only small amounts of stimuli can be tolerated, and only for short periods of time. It is all the person can do to just get through the day a few hours at a time.

VERY SEVERELY AFFECTED

9/10

There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain for all but a few short periods in the day, increasing to severe or very severe symptoms (8 or 9) following even trivial physical or mental activity with a recovery period of hours days, weeks, months or longer. In some patients only small amounts of stimuli can be tolerated for short periods. It is all the person can do to just get through the day one hour at a time.

9.5/10

There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain almost continually, worsening to very severe (9) or extremely severe (10) following even trivial physical or mental activity with a recovery period of hours, days, weeks or months or longer. In some patients any type of stimulus is intolerable; even very low levels of light, noise, movement or motion are excruciating for more than very short periods. The smallest physical movements bring extreme exacerbations in symptoms. Intellectual activity is similarly affected. It is all the person can do to just get through the day one minute at a time.

PROFOUNDLY SEVERELY AFFECTED

10/10

There is very severe (9) pain and/or overwhelming sensations of illness/dysfunction throughout the body and brain continually, worsening to extremely severe (10) by even trivial physical or mental activity with a recovery period of hours, days, several weeks or months or longer. In some patients any type of stimulus is intolerable; even very short/low exposures to light, noise, movement and motion are excruciating and may require a long recovery period. The smallest physical movement brings intense exacerbations in symptoms. Mental activity is similarly affected. It is all the person can do to just get through the day one minute or one second at a time.

On this scale I would put myself at the severely affected.  I don't normally quote scales, but they are useful to demonstrate.  I hope they display properly as I can't manage any more.

Fundraising Update - How do you raise awareness and money whilst keeping within limitations?

Well it's all going well so far, I have got £240 donated, which is nearly half way to the target I set, which was actually totally random, but would be great if I could reach it.

My promotional goodies have arrived and I have spoken to Emily's teacher and am hoping that the children will be able to do something princess related :-) I have also got some Princess light up balloons :-0

In June we had a photo session booked, but due to another commitment needed to cancel it, but then I saw there was a session on May 10th, the day I am planning my Princess dress up, so I am hoping we can change to that day, it will be great, but exhausting!

It's so difficult to know what is best to do, I mean how do you raise awareness and money and keep to limitations?  At times it is exhausting just thinking about it.  Even writing the blog and setting up the giving pages takes effort especially as I don't have a laptop or tablet so have to sit at my desktop.  Getting involved and going to events is not a good demonstration of ME as no one can see the effort that it takes and the consequences after as we go in there with a smile and join in as much as we can.  I know I am pushing my limits, I am struggling quite a bit as it is with pain, fatigue, dizziness, brainfog and tinnitus being very bad at the moment, so I am actually doing myself any favours by trying to do this?  But its too good an opportunity to let it pass by or to hope that someone else will do it instead.

I am trying to get people to donate direct to my just-giving page, to save me having to collect and donate on peoples behalf and if people donate for themselves they can claim the gift aid.  I am also determined not to chase people for money, when we have done sponsored events before I spend so much time reminding people they said they would donate and trying to get money from people and then ending up putting a lot of it in myself, its really not worth it.  If people really think it is a good cause then they will make the effort to donate, if they don't I think that is probably the true reflection of what they think about the cause or the person trying to raise money, sorry if that sounds harsh.  Having said this Just giving is not working at the moment, which is not very helpful, but it's probably because everyone is making donations following yesterday's marathon.

I had a giggle at this 

but seriously for a person with ME, just getting out of bed can feel like a Marathon.

I am going to be joining in with the Team Princess auction on May 12th.  I need to sort out some things to donate.  If any of my crafty friends have anything they can donate, it is all for a good cause.  The organisers want to know details of any items by May 5th.

I am also following with interest Knit and Tulip for ME, they are currently doing a campaign for knitting tulips to go into public displays, the first being in London on May 14th.  I really want to join in and knit, but know that I won't get chance before May 14th, but they are still collecting afterwards. (The pattern for the Tulips is on the site). They are also every day during April, listing an ME symptom or how ME affects us each day, up to day 26 I have all the symptoms :-(  Sad but true.  This also makes me feel awkward about trying to raise awareness as I don't want to sound as if I am moaning or wanting people to feel sorry for me, I know there are many people in much worse situations and many more worthy causes. Hence my comments yesterday saying;

"Still time to donate to my Princess for ME event  https://www.justgiving.com/Jane-Shaw5, read about it here http://poohbear71.blogspot.co.uk/2015/04/princess-for-day.html

I know it's not the most important thing to donate to, but it means a lot to me and every bit helps, so please give if you can. If you are not able to give, please spend just a few minutes finding out the effects of ME at sites like http://www.actionforme.org.uk/ or http://www.meassociation.org.uk/, many thanks"

Lastly as I am now very dizzy and in pain and feeling sick and its only 9.30am!!  I saw this and will definitely be printing some off for my publicity information

and a few others I might use if I have the time and energy to print them off.

(I don't have the energy to put make up on and wash and dry my own hair, but still like this one)

Princess Update

I am pleased to announce that I have been donated £75 already on my Just Giving Page, you can also donate by text send JEMS58 and amount to 70070.  Donating through just giving means you can claim gift aid if a tax payer which increases my total :-) There have to be some benefits to paying tax!

I think I have decided what I will be wearing, but not giving it away yet!

Watch this space!

A fellow sufferer made this poster from some of the words I used in my blog

Princess for a Day

Every girl dreams of being a princess.  We saw Cinderella recently and I certainly dreamy of having a dress like that

I also love the dresses in Frozen, even though they are not real.  Many kids costume makers are cashing in on those.

And of course we would all love to have "Princess" Kate's wardrobe, even her maternity wardrobe is great.

Anyway, May 12th is ME awareness day and a group of people have dreamt up Princess and ME to raise awareness of the condition and to raise money for research.  The idea is to dress as a Princess and ask people to sponsor you and share pictures of you.  The group has a team Just Giving Page or you can set up your own.  I have my own at Just Giving so I can see how much I raise.  My donations are going to Action for ME, but there are other ME charities that people can donate to if they prefer, including ME Research, ME Association, Invest in ME, Tymes Trust.

On or around May 12th 2015 Emily and I will be dressing as princesses.  As ever with these things my brain is working overtime thinking of all the things I could do eg having a Princess Tea Party with Emily's friends or getting school involved, but would they actually raise awareness as it would just be me doing too much and making myself worse, but people wouldn't see the worse bit.  How do you demonstrate constant fatigue, pain, dizziness, brainfog, sensory overload, insomnia and much, much more. No one sees the hours laid in a quiet dark room as we always try our best around others and pay the consequences in private or at the expense of immediate family only.  

Perhaps I should have a day in bed dressed as a Princess, being waited on hand and foot like a real Princess?  But that isn't me either and it wouldn't make it much for for anyone else.  How do you demonstrate the symptoms to other people without being cruel?  Even if you stamp on someone's foot to show them pain, it wouldn't last.  Or you could spin them round and see how they like being dizzy, but again it would stop after a short time, there is no way of showing what it is like to feel that way all the time and the effects it has on daily life and immediate family.

I know some people are involved with Big Sleep for ME, but actually one of my top symptoms is insomnia, but its good that people who are bedbound feel they can take part and a pyjama day would be much easier than dressing up, or maybe I could get Princess Pyjamas.  Whatever I decide I won't be able to wear it all day as I have school run to do and I am not that brave!  I may do my thing on May 10th as there will be people around to help me get ready and Emily could join in more.

I don't think I will be buying an outfit, I would rather give the money to the charity, so will have to make one up from things I have.  Emily has many Princess outfits, she will be spoilt for choice and I wouldn't be surprised if she keeps getting changed and wears them all, but she has more energy than me, getting dressed once a day is more than enough for me.

Wish me luck and don't forget to sponsor me :-) and if anyone else wants to dress up to show support please do and don't forget to send me your pictures.  I am always complaining that people don't care about ME and that they don't think it is important enough to warrant fundraising or awareness.  I do hope that people will prove me wrong this time.  I know not everyone can afford to give money, but your support and understanding is just as valuable.

Thank goodness it's Monday!

What a relief that it's back to school today, the Easter holidays have seemed very long and hard work.

Emily had lots of activities on and enjoyed them, but its hard work getting her there and back.  Her favourites were singing and dancing with Red Carpet Theatre School.  She would love to be part of the theatre group but we cannot give the commitment that it needs.

During the holidays it was my Mum's 70th birthday so we went to visit for a few days and caught up with family and friends.  I had some cakes made by Cakes for Breaks which were very nice according to those who had them, sadly not gluten free, but they looked great

I made a card of course

The cat is an origami pattern from Printable Heaven and the paw it a stitched using a pattern from Crafts U Print.

I really need to take my tired and achy body to rest now, I am sad not to be able to attend the school church service this morning, I always try to go, but would not be able to get into the church today :-(  I hope Emily is not too disappointed.  I need to get plenty of rest for the next holidays which are only a month away!!

Outdoor Play

Many of you may have seen the disgusting remark made by Nigel Farage earlier in the week about that immigration divides communities to the extent that children can no longer play outside together.  Really?!  He obviously has little contact with children.  Children do not care about the colour of people's skin or their background to them they are just other children and they will play together given the chance.  I imagine most of the prejudices come from adults, telling their children who they can and can't play with.


A large group of playworkers have drafted a letter to politicians , posted on Policy for Play.  I qualified as a playworker back in 1997 and its good to see some familiar names on the list.
The letter is as follows;


Dear Candidate,

Following the recent assertion, from Nigel Farage of UKIP, that immigration divides communities to the extent that children can no longer play outside together, we would like to assure you that in our experience of supporting community play over many years, this is not true.

We would, however, like to highlight evidence of the real barriers to outdoor play.

Play is in some ways a delicate thing, largely unnoticed by the adult world. Yet when children are free to play, they thrive. There is plenty of evidence that playing is vital to their development, essential to good mental health and physical activity. It is how children discover their identity and their passions. Most importantly, playing is how they most enjoy being alive.

Children play regardless of their differences, and the friendships they form through play make up the social fabric that strengthens families – and whole communities. Over a number of years there has been a great deal of research into the barriers that children face to their natural desire to play with their friends in the public spaces near their homes.

The number one offender is invariably traffic, followed by parental anxiety about ‘stranger danger’.

Research (by Ipsos MORI, NOP and a range of academic institutions) over a number of years has shown that other reasons for children not playing out as much as they and their parents would like, are anxieties about bullying, too much rubbish, poorly maintained or boring playgrounds and a lack of trusted adult oversight. In recent years, fear of accusations of bad parenting has also been cited as a reason for keeping children inside. Pressure on both children’s and adults’ time – from school and work respectively – is another.

These barriers have become so great that some studies estimate that today’s children have less than 10 per cent of the space for free play, compared to only 30-40 years ago. Strong links have been made between this decline and a range of poor health trends.

None of the evidence that we have looked at suggests that immigration is a significant factor.

On the contrary, children playing outside bring people together and engender strong, cohesive communities. We see children from diverse backgrounds playing together in their local neighbourhoods every day, but to enable and support more children to play outside – the way they have for countless generations all over the world – we need to control traffic, not immigration. Children and their parents need to have confidence in the public spaces where they would play.

They need more road closures, lower speed limits, safe routes to school and play areas, more and better community policing; and funding for playwork and community play projects. In the longer-term, planning decisions and spatial development strategies must consider what children need from the built environment and the wider public realm.

We would like to invite you to meet some of us and to visit the streets, estates and villages where you can see for yourself the power of community play. We would also be more than happy to discuss with you how the new government can support children’s play after the election.

Please pledge today to work with us to improve the spaces where families live; to support community play for the UK’s children – in all their glorious diversity.

We look forward to hearing from you.

Yours sincerely,

Isabelle Allen, Playworker, Sycamore Adventure
Marc Armitage, Independent Playwork Consultant
Roger Barham Fran Barton
Arthur Battram, PleXity
Simon Bazley
Tracey Beasley, Playwork and Early Years Trainer, CWT – Chamber Training
Joan Beattie, EQ Playwork Training and Consultancy
Lucy Benson, Islington Play Association
Steve Boeje, Play Association Hammersmith and Fulham
Jackie Boldon and the Shiremoor Adventure Playground team
Dani Bowman, Community Development Officer, High Wycombe
Karen Benjamin, Training and Development Officer, Playwork Partnerships
Janine Sally Brady
Amanda Brook
Professor Fraser Brown
Donne Buck
Petra Burgess, senior playworker, Bapp
Phill Burton, Dynamix
Imogen Butler-Cole
Rebecca Coley, Birmingham PlayCare Service

I have sent this to my local candidates, you can find out who they are for your area at BBC Election 2015, just enter your postcode in the box where it says find your constituency, it then gives you a list of all candidates in your constituency and you can find their contact details by Googling their name.

I hope as many of you as possible will do this, our children need safe places to play and they don't need people telling them who they can and can't play with.  I am lucky to live on a cul de sac and so we have children playing on the street and they have great fun, well most of the time anyway, there are the usual childhood squabbles, but in the main they group together and play, my daughter hates it when the other children are not around to play with.

Our children grow up so fast these days and need these experiences, whilst they can.  Comments like those made by Mr Farage will just drive more children inside to their computers and TV's.

As a 1970's child we played outside all the time.

My Pleasure

Living with ME and its limitations can have a huge impact on what is pleasurable.  Things that other people find a pleasure are often hard work.  With so many food intolerances I also get little enjoyment out of eating out or even a piece of chocolate.  My pleasure can be found in a cup of tea.  Not very exciting I know, but I do love a cup of tea, here is what is in my cupboard.

A closer look

My favourites are Redbush, Green Tea and Decaf Tea.  

One of my intolerances is Caffeine which many people do not realise is in tea.  It is highest in black tea (that's normal tea).  Chart below shows levels in different teas (http://www.ezentea.com/), think I need to save the chart as when I am out I can never remember the levels and end up jittery or worse from drinking the wrong thing.

A more detailed breakdown can be found at Adagio Teas caffeine content along with the Health Benefits of tea

I can occasionally drink small amounts of Green tea, but now there is decaf quite widely available I drink that.  Drinking out is getting easier as many places now have standard decaf or a green tea or fruit teas.  I do love it if we find a place with a good choice and new things to try.  I have to take care with fruit teas as many of them are flavoured black tea, if it's called tea its usually got black tea in it, ones called infusions are usually just fruit.  Decaf teas are not caffeine free though.  Adagio teas also states "Also, keep in mind that, because teabags contain broken leaves of smaller size, they produce an infusion with more caffeine than loose tea does. This is also true of very fine loose tea. In comparison, the same volume of coffee yields at least double the amount of caffeine. In fact, most sodas have more caffeine as well." 

As you can see from my collection I buy them in any shops, often getting ones that are on offer.  The ones I found most recently were a set in Lidl; Zingy Lemon and Ginger, Raspberry Inferno and White Pear Tatin.  They sounded interesting and although I don't drink that many fruit ones I do like a change, but always go back to the decaf, Redbush and Green tea.  The lemon and ginger is quite pleasant as long as its not too strong I am not a big fan of ginger flavour, but lemon flavours are nice and I will sometimes drink hot water with a lemon slice in it.  The Raspberry one was made with caution too as apparently it contains Chilli, so I expected not to like it, but you can't taste the chilli so I like it.  The White Pear Tatin was the most appealing, but it has quite a strong vanilla smell, the taste is not so strong, but its too sweet for my normal tastes.  I think these will get drunk few and far between.  You will notice quite a few with cinnamon in; Apple & Cinnamon, Spiced Orange, and Mango and Cinnamon, its a nice warming flavour and reminds me of things like apple pie and hot cross buns.  Also in the collection are some that are not that pleasant, but I have to help my digestion so only drink after a meal, if I remember; Peppermint and Fennel and Nettle they wouldn't be my tea of choice.

I have found a great online tea company Adagio Teas.  As you can see I have a few bags, mainly as I buy enough to get free postage.  They have a Rooibos (Redbush) page and Decaf  page I have tried them all, except the sweeter sounding ones.My favourite are the earl grey flavoured ones Decaf and Rooibos.  With it being fresh and leaf tea the flavours are great.  The cost per cup is rather off putting, but I tend to use each lot twice as it is plenty strong enough.  I drink all my teas with no milk and no sugar so don't like them very strong.  I have not tried the white teas as I think the caffeine might be too much in these brands.  Many places have Teapigs which are very good, but I haven't bought for myself as they are quite expensive and also Eteket.  I have not been in a Whittards recently they are the high street shop for tea and they don't have many caffeine free ones that I like and they are quite often too sweet.  This said most supermarkets now have a good range of fruit teas and alternatives.  Lidl have started selling their own brand Knightsbridge including decaf and Redbush.

I have a rather mad idea of hosting a giant tea party with loads of different teas to try where people come along and bring a picnic and pay to be part of the event and there would be cakes and buns to buy and maybe craft projects too to raise money for charity.  I could be the Mad Hatter!!  In reality more like the Dormouse!  I have often thought about this, but the organisation would be too much and if it were to raise money for ME charities I don't think there would be much of an interest, but there are plenty of other charities equally worthwhile, maybe one day!

Meanwhile, it must be time to put the kettle on now, perhaps I should change my name to Polly!  Now which one shall I have this time?