Friday, June 27, 2014

ME Carers Meet Michael

This Michael's view of ME and caring for his wife Wendie who has severe ME.

 My life as a carer?

Oh where do I start with being a carer for someone with ME? There are so many aspects to being a carer. Some people care for a disabled child along with the rest of their family, or an elderly relative along with working or their own family. Others care for a disabled relative or spouse, which requires many hours care a day and night. 

Anyone who knows anything about ME and the many misdiagnosed diseases, will know that they have a unique set of problems that no other diseases suffer from. One's experience of caring can be totally governed by the standard of support the carer and cared for person receives from their support agencies. 

I remember the day that M.E arrived in my life, as though it was only yesterday. I presume Wendie had known about it previously, although at the time it was only Glandular fever and a general feeling of being very unwell. I guess with Wendie having been in the health service, she would presumably understand what it was all about, but over time, I have come to realise that isn't necessarily true. 

Glandular fever became EBV which in turn became M.E (otherwise known incorrectly as 'CFS') In the early days and years, caring was only really assisting Wendie when she was too weak or ill to function as normal, but bit by bit, your role grows to the point where a normal week seems to be a seamless cycle between working full time, then on leaving work, you immediately start again with the essential home jobs, that are no longer possible for the ME patient, such as shopping etc, as they are gradually losing the ability to walk far or carry weight. 

The daily meals, twice weekly washing etc and general work extend your working day from what was normally a 12 hour day, to something more like 15 hours a day which also includes weekends. Then eventually the time comes when annual holidays are no longer possible, as travel is far too stressful and tiring for someone with ME, to gain any overall benefit from the change of environment. 

With most people who gradually become disabled, there are services to help them along the way. Their GP is generally sympathetic and knowledgeable about their condition. BUT sadly, that is NOT the case with ME. In the 1990’s, people with M.E were told from the point of diagnosis, that there is nothing the NHS can do to cure their condition. Also that they should not believe anything they read or hear about their condition, (note it is rarely called a disease, even though it was recognised by the WHO in 1969 as the neurological disease G93.3 ICD 10). 

Basically they were cut adrift from mainstream NHS services and expected to deal with the disease in isolation. This has resulted in tens of thousands of people with ME struggling for a decade or more, with this slowly debilitating disease alone, not really knowing what is actually wrong with them. Although there were local ME support groups in majors towns & cities, people with M.E were not always aware of them, and very soon their condition becomes so debilitating, that they become housebound, if they do not have anyone to move them around outside in a wheelchair. 

This then leads to major problems attending GP surgeries and hospital appointments etc. All of whom have very little knowledge or interest in ME, as they were told by the NHS that it is a psychosomatic condition and should be treated with psychiatric Mumbo Jumbo such as pacing your daily life. At a later stage they may be offered Graded Exercise Treatment, which results in 80% of ME patients getting worse and Cognitive Behavioural Therapy, which is intended to convince PWME that they are not really chronically ill and much of it is in their heads. 

The NHS ME/CFS units are a perfect example of the calamity of justice and neglect that people with ME had to endure through out their illness. Hospitals called patients in periodically, but offered very little hope of improvement. Some recommended pain clinics, but in the 1990’s the pain clinic staff had very little experience of treating someone with any real degree of M.E, so very little benefit was gained, and they were often discharged feeling worse for the experience. 

Although big M.E support charities talk about many of the problems that ME patients have to cope with, they do not actively address then in their role as M.E medical advisors to the Medical Research Council, so the NICE guidelines have hardly changed for the past 30 years resulting very little progress being made in the day to day lives of PWME. 

It has been said that treatment and care for M.E patients was better before the invention of the 'CFS' theory, mainly because GP's and Dr's had to treat it as the Myalgic Encephalomyelitis disease that Melvin Ramsay described in the mid 1950's, following the London Royal Free outbreak and the WHO recognition of M.E as a neurological disease in 1970. Since the 'CFS' diagnosis became established in the late 1980's, care and treatment for people with M.E from NHS services has in general, been a minefield of misinformation and ignorance throughout the whole system. Anyone who is fortunate enough to find an interested GP is very fortunate.

So I guess you are now thinking, what has all that got to do with me being a carer? 

Well for fourteen years we struggled through, putting many of the problems Wendie incurred down to bad luck and difficult people. Our GP who was scathing in his attitude to M.E. On one occasion, the GP had failed to cure a persistent chronic cough that Wendie had suffered for over three months. This led to Wendie damaging her vocal cords and having a weak voice ever since. One of the GP’s locums told Wendie to join a choir, to strengthen her voice. She also stated that there is no such thing as pain. The was a constant stream of junior hospital Dr's who offered nothing year in, year out on every twice yearly appointment. The pain expert who had never treated someone with M.E. The endless stream of carers who don't have a clue about caring for someone in constant pain with noise & light sensitivities. The physio that tries to 'cure' your M.E problems, rather than the job she was sent to do. The district nurse who has no comprehension of M.E. The list has been endless and is still growing. 

For those fourteen years, I was working full time and trying to deal with many of these problems, or trying to find alternative ways to make up for the failings of the NHS support system, that was failing Wendie so badly. In the end, even my own health began to suffer with sleep problems, digestive problems and being generally run down. The GP’s and hospital Drs could not get to the bottom of it until one day, I was so tired, I fell asleep whilst driving home one dark and cold November night. Fortunately, it was only a fleeting nod off and I woke to see an array of red breaklights at the approaching roundabout and was able to stop before a collision. This was the wake up call I needed to get some help. 

I was diagnosed with depression, which surprised me because I didn’t feel down, just always tired. But I was in no position to argue. I took the tablets and the advice and tried to change my life as much as possible. Not too long after that, the company I worked for became victims of poor management and the 2008 banking crash, so I was one of the 50% who lost their jobs. I decided that my health could no longer stand another fulltime job and my caring responsibilities, but due to the chances of finding part time employment in my field of work proved to be impossible, I decided to become the full time carer of Wendie. Within 6 months, most of my unexplainable health problems went away and it was assumed that they had been stress related. 

With the free time I now had on my hands, I decided to try to sort out all the problems that Wendie had been subjected to, by the NHS support services. I went back to the local M.E support group for initial advice, but unfortunately their advice was the same as that given to me two years earlier. So I decided to follow it again but this time, not accept being fobbed of by everyone concerned. I initially asked for a re-referral to the local ME/CFS services unit at Fairlawns. I also closely monitored the response that Wendie was getting from our GP. I requested a dietician to see Wendie, which eventually came and was quite useful. 

In parallel with that, I did an enormous amount of online and library research into how M.E came about. Mainly back to the first real recognition the disease got by Melvin Ramsay in the mid 50's, who named it Myalgic Encephalomyelitis and to this day, his views are still highly respected among those who really understand M.E and was confirmed in 1969 by the WHO recognition that logged it as G93.3 ICD 10. I then read about how negative influences arose, that challenged Ramsay's views on M.E by the likes of McEvedy & Beard around the early 70's. Later I read large sections of Hillary Johnson's Osler’s Web, that told the sordid story of how the ME outbreak at Lake Tahoe in Nevada USA, was covered up and the resulting fabrication of 'CFS' by the CDC's & UNUM, that was intended to subjugate M.E, to initially benefit UNUM, whose sole priority was to massively reduce the spiralling growth in M.E diagnoses, that were costing them millions in private health care claims in the US. 

UNUM needed a psychosomatic solution to this problem, to enable them to avoid these claims and the convenient excessive emphasis on fatigue in the 'CFS' diagnosis, fitted their bill perfectly. 

This led to the corrupt diagnosis of 'CFS' seeing the light of day for the first time in the mid 1980's. This was then proselytized around the M.E world like a new religion, by the likes of Simon Wessely and the Liaison psychiatrists who entered M.E in a big way. Later the DSM's pushed their influence to greater levels, to the point that most Health services around the world only followed their psychiatric view on M.E.

Eventually the re-referral to the Fairlawns ME/CFS unit for a more up to date assessment arrived. They suggested a home visit to access the situation. The Physio who came to access Wendie, said that they may recommend a stay in an ME unit in Leeds. I asked what that would involve, and he said that they would use graded exercise therapy to ‘help’ her. Even with the little knowledge I knew at the time, I knew about Sophia Mirza’s treatment by psychiatrists using GET and that it would probably harm Wendie. I suggested to him that it would harm Wendie, if not kill her, which he did not appreciate. I hoped that was the last thing we would hear about GET so I then forgot about it. 

Following their visit, they sent a letter to our GP and to us, recommending that Wendie be given a ten week in-patient stay in the ME unit in a Leeds hospital. 

On the face of it, this seemed good news, although it seemed a long hospital stay and a long way to travel, but we went along with it. The GP had to present the recommendation to our local PCT for funding. We were led to believe it would consist of a couple of weeks of settling in, then general medical tests and checks etc. This sounded like something Wendie had in the Sheffield Hallamshire hospital around 2002. Beyond that, we were not really very well informed at all about what would happen. 

We waited two months, then chased it up, only to find that the referral to the PCT had been lost by the GP. Fortunately I still had our copy, so took it down to the GP myself and made sure that it was signed by the GP's and sent that day. 

Again after a long delay, which was by then the new year of 2010, we received a reply from the PCT refusing our request to fund the hospital stay, on the grounds that Wendie had failed to engage with the local NHS services. This non-engagement they referred to was the period when I was working and Wendie was both ill and struggling badly to get lifts to hospital appointments. She only actually missed two official appointments, but postponed them a couple of times each by phone, in good time for the hospital to allocate the appointments to other patients. They certainly know how to kick someone when they are down. 

I immediately submitted an email appeal to the PCT, against this refusal decision, followed by a telephone complaint to the PCT manager. Still they refused to bend. So I contacted the Sheffield Star and told them everything about the failures in care and treatment for people with ME etc. Much of what I told the Star, they did not print, but credit where it is due, they gave Wendie a fair deal on their coverage. This resulted in us being offered legal help from a top solicitor, that we eventually did not need, as the PCT backed down and agreed to pay in instalments. First four weeks then the rest dependent upon how Wendie coped with that.

At this point, I decided to find out just what the treatment on the ten week stay consisted of. Due to the publicity in the press, Wendie had been contacted by some former patients from the Leeds ME unit, who filled in many of the missing pieces that Fairlawns failed to tell us about. The first month was a settling in period and general heath check up including relevant tests etc. At the time, the unit had an Occupational Therapist and a clinical immunologist. These people, we were advised, were the best thing about the Leeds ME unit. It also became apparent that the hospital was actually a psychiatric hospital ward, with two beds for ME patients. The final six weeks were an intensive GET & CBT course, which by then I had found out were a fate worse than death for most severe ME patients. We were pleased that Wendie would be getting the important part, but hopefully would miss out on the torture.

Shortly after Wendie was given the funding, the Occupational Therapist and Clinical Immunologist were made redundant and the management of the ward and treatment was handed to a liaison psychiatrist (the same type of psychiatrist as Simon Wessely) 

Whilst I had the attention of the PCT, I put in a written compliant about our GP, who had been as most GP's are towards PWME, somewhere between useless and negligent. This resulted in me appointing an advocate from Independent Living and attending a meeting with the main GP partner. I took five main points that we wanted addressing. We got three of them and another one a year later, via a district nurse. The GP's attitude has been better since then, but much of that improvement could be down to the crisis that was about to hit us. 

In May 2012, Wendie was diagnosed with Cancer and the day after my mother died. Just before the operation, Wendie was informed that a place had been found for her in the Leeds ME/CFS unit, but it had to be cancelled due to the urgent operation. A number of months later we heard that Fairlawn’s were most indignant about Wendie not attending at Leeds. It seems that Cancer is not an acceptable excuse for avoiding psychiatric abuse in NHS ME/CFS units. 

From the moment of being informed of the Cancer diagnosis, Wendie's care became like Premier League standard compared to the Non-league standard ME care that she had suffered for the previous 17 years. Although the curse of ME was still lurking in the shadows, with ignorant auxiliary nursing staff, who did not accept that people with severe ME had light sensitivities and could not walk unaided or care for themselves without assistance. 

These sort of problems occurred again with district nurses and physio's after the radiotherapy treatment. Unfortunately, no exceptions are made for PWME taking longer to recover from Cancer operations and radiotherapy and as the time approached 12 months, the Premier League care started to slip backwards. Small things like regular district nurse visits became less dependable and further apart. The physio's became increasingly impatient with Wendie's inability to walk following radiotherapy and seemed to be more interested in curing her light sensitivity by opening the curtains until they both them and the nurse pulled out. Before you ask, we never saw the McMillan Nurses. 

Following Wendie’s release from Radiotherapy, the Social Services insisted on changing the local NHS carers for a private care agency, who to be frank were awful. It was like being put on a production line. The standard of care was the last aspect the care agency cared about, just getting round all clients in the shortest time was their only priority. Continuity of care were foreign words to them as Wendie had 40 carers in three months. This led to a three month struggle with the agency to get them out and another more acceptable one in. 

One of the deals I struck with the Social Services at the changeover from NHS to private care, was to have Wendie's tablets delivered in NOMAD packs so that we could deal with them, mainly because we didn't want them coming four times a day and I didn't trust them to do it right. I also took other jobs off them because they made such a mess of it. The idea was if they had less to do, they may do the remainder of care better. But they didn't. They just left earlier. 

All the failing services required hours of complaining to various different agencies and offices which was all unnecessary extra stress for Wendie, at a time when she was supposed to be recovering from one of the worst things in life that can happen to you. This all went in parallel with losing both my parents and Wendie's mother and me breaking my hip in a bizarre accident in Weston Park hospital. So as I said at the beginning, how hard caring for someone with severe ME can be, is down to the quality of the support that you are given.

Wednesday, June 25, 2014


I have now finished the cards for Mama.

I couldn't work out a way of doing them together so made 2 separate cards, which actually worked out as I had 2 verses I wanted to use.
Pattern from Stitching Cards.

Inside rainbow card it says

Time for me to go now, I won't say goodbye;
Look for me in rainbows, way up in the sky.
In the morning sunrise when all the world is new,
Just look for me and love me, as you know I loved you.
Time for me to leave you, I won't say goodbye;
Look for me in rainbows, high up in the sky.
In the evening sunset, when all the world is through,
Just look for me and love me, and I'll be close to you.
It won't be forever, the day will come and then
My loving arms will hold you, when we meet again.
Time for us to part now, we won't say goodbye;
Look for me in rainbows, shining in the sky.
Every waking moment, and all your whole life through
Just look for me and love me, as you know I loved you.
Just wish me to be near you,
And I'll be there with you.
Music and lyrics: Conn Bernard (1990). Vicki Brown

And I have included a copy of a poem Emily wrote

Rain and sun together makes a rainbow
Always bright and cheerful
It is colourful and pretty
Now when it is fading it goes lighter
By now I think rainbows are brilliant
Over to you, what do you think?
Wow, now I think the rainbow has gone now.

Part of a pattern from Stitching Cards

Inside the butterfly card it says

You're leaving me and I DON'T KNOW WHY
All I know is that I'm saying goodbye
I wished to god it would be okay
but I guess life doesn't go that way
A pain that’s impossible to describe
A loss I wish I never had to feel
Every time I see your face
it tears me up inside to think
That your life is at its end
Every time I see your face
it tears me up inside to think
That you are dying inside
I wished we didn't have to
I wish we didn't have to
You're leaving me and I don't know why
I fight so hard to hold back tears in my eyes
The life I remember has long passed away
All that is left are memories

Music and lyrics:Verse

These will now go with my grandma to her final resting place.  RIP Mama, we will all miss you lots.

Tuesday, June 24, 2014


I think I need to take a leaf out of Timmy's book!  he looks so chilled out and peaceful this morning

I feel like going a curling up with him.  I have never met a stressed cat!

I am struggling to keep going and try and keep things as normal as possible for Emily.  Emily of course knows things are unsettled and her behaviour is not good.  Its very difficult to keep calm and give her the attention she wants and needs, but she is very demanding at the best of times.  As is the case when things are unsettled meal times and bed times are becoming a battle ground.  I think we need a big dose of chill magic waving over us, or to be more like the cat! (move over Timmy!)

Monday, June 23, 2014

Slow progress

I am making slow progress on the card for my Grandma's funeral, there is so much else going on, but it will be done.  Its been an emotional weekend, seeing my grandma at the funeral directors and sorting things at her house and then the announcement in the paper today.  My sister in law found a very moving piece written by my grandma about her work with injured service men during the war.  So there have been many more weepy moments and everyone is finding things difficult one way and another.

I have a few pictures to share now of other things I completed in the last few weeks.

The anniversary card I made for Rob.  Our13th Anniversary which is lace and Chrysanthemum, so this was what I came up with, using a heart die cut from funky foam and a chrysanthemum die cut bought from ebay, some lace ribbon and letter tiles that came free with Card making and paper craft magazine

Next is the Father's day card for my Dad

using embossed tree folder (make unknown), background paper from Craftville and birds from a pattern at Stitching Cards.  I think they would look sweet on Christmas cards as robins.

I changed the sunshine picture as I thought it looked like it had been made by a 5 year old!!  Think this version is neater.

Card made for my brother who celebrates his 40th birthday today.  Pattern from Form-a-Lines.

Finally a couple cards I was given for my birthday cards that are so pretty,

And a picture of Emily last week using the garden broom as a broomstick and pretending to be a witch, should be captioned Daft as a Brush!

Friday, June 20, 2014

Crafty Buys and presents

It was my birthday on Monday, I was not able to do much or felt like doing much, but did go out for lunch with Rob as it was our wedding anniversary too.

I got some money for my birthday and have now well and truly spent it on more craft items, I don't need more, but the temptation was too great and it might cheer me up a bit!!

So here is what I have bought;

Paper Trimmer as the one I have only cuts straight and I like the pattern edges.

Medallion Die Cutter because I like the shape

Embossing scene because I like the image and I have a stitching pattern windmill too

Butterfly corner embossing they work well to add stitched piece to

Heart Embossing die because I like it

flower corner embossing folder it should work well with stitching too.

Non Stick Scissors because every pair of scissors I can find seems to be sticky!!

I have not got any of these yet as all bought online, so I can now expect lots of goodies in the post and hopefully find time to play when they arrived and of course find somewhere to keep them!!!  So much for having a clear out!

I did get a few crafty presents too

Owl Embossing folder

and another

Sizzix cutting pad long

Sizzix cutting pad standard

Once things have settled down we are hoping to go out for a birthday meal at 2 Oxford Place a totally gluten free restaurant in Leeds.  We would have gone for lunch on Monday, but they do not open on Mondays.  Will be great to be able to have what I fancy rather than what I can have. I contacted them about a children's menu and got a quick and helpful reply saying they don't have a children's menu but can do plain sandwiches, or small portions half price or GF fish fingers.  Emily loves fish fingers so not a problem there :-)

Thursday, June 19, 2014


I am trying to stitch the card for my Grandma's funeral and want a verse to go inside.

I quite like this as the stitching is a rainbow.

Look for me in Rainbows

Time for me to go now, I won't say goodbye;
Look for me in rainbows, way up in the sky.
In the morning sunrise when all the world is new,
Just look for me and love me, as you know I loved you.
Time for me to leave you, I won't say goodbye;
Look for me in rainbows, high up in the sky.
In the evening sunset, when all the world is through,
Just look for me and love me, and I'll be close to you.
It won't be forever, the day will come and then
My loving arms will hold you, when we meet again.
Time for us to part now, we won't say goodbye;
Look for me in rainbows, shining in the sky.
Every waking moment, and all your whole life through
Just look for me and love me, as you know I loved you.
Just wish me to be near you,
And I'll be there with you.
Music and lyrics: Conn Bernard (1990). Vicki Brown

I also found this song by Verse

You're leaving me and I DON'T KNOW WHY 
All I know is that I'm saying goodbye 
I wished to god it would be okay 
but I guess life doesn't go that way 
A pain thats impossible to describe 
A loss I wish I never had to feel 
Everytime I see your face 
it tears me up inside to think 
That your life is at its end 
Everytime I see your face 
it tears me up inside to think 
That you are dying inside 
I wished we didn't have to 
I wish we didn't have to 
You're leaving me and I don't know why 
I fight so hard to hold back tears in my eyes 
The life I remeber has long passed away 
All that is left are memories 

Interesting? Updated

I have been offline for a few days due to decorating the room where our PC is (I wasn't doing the decorating, but it feels like I have!!)  I am struggling at the moment so can't post much, but these articles caught my eye this week

Third of ME patients misdiagnosed, with full research text from the BMJ.  Unlocking the ME/CFS puzzle and Establishing Brain bank. And another just seen about Fibromyalgia.

I can't comment on any of these at the moment as I am not able to read them properly and digest the information.

Friday, June 13, 2014

Back to school!

Last week I signed up for a free course with Future Learn its a course about Play run by University of Sheffield. Exploring Play; the importance of play in everyday life appealed to me as a Playworker and a parent and it is free!  I have no idea if I will be able to do the work, it says 3 hours per week for 7 weeks, so that only 1/2 an hour a day and a day off!  It starts at the end of September so gives me a bit of time to recover from the current issues and the summer holidays.  If nothing else it should be interesting and may give me some inspiration for things to do with Emily.

I have not seen the organisation before and there are a few interesting sounding courses of varying lengths and starting all through the year.  Others that sound interesting to me are Science of MedicinesInside CancerPsychology and Mental healthHeart health


The song in my head this morning is Memory from cats, it was a favourite of my Mama's and the wrords are quite poignant

Not a sound from the pavement
Has the moon lost her memory?
She is smiling alone
In the lamplight
The withered leaves collect at my feet
And the wind begins to moan

All alone in the moonlight
I can smile at the old days
I was beautiful then
I remember
The time I knew what happiness was
Let the memory live again

Every street lamp
Seems to beat a fatalistic warning
Someone mutters at the street lamp gutters
And soon it will be morning

I must wait for the sunrise
I must think of a new life
And I mustn't give in
When the dawn comes
Tonight will be a memory too
And a new day will begin

Burnt out ends of smoky days
The stale cold smell of morning
A street lamp dies, another night is over
Another day is dawning

Touch me
It's so easy to leave me
All alone with my memory
Of my days in the sun
If you touch me
You'll understand what happiness is
Look a new day has begun

We are all left with many memories of Mama, she loved us all and shared our growing up.  Many memories of staying with her and Papa, days out (especially to the seaside), her cooking for us and knitting for us or singing songs to us, think the one I remember most is How Much is that Doggy in the Window.  She used to tell stories about things I did as small children, think the one she told most was either me telling the vicar to be quiet when he started his sermon, or me using her gloves to mop up spilt coffee at my Auntie's wedding.  I am sure many more memories will come along and make us smile in these difficult times.

Mama is now on her way to join her much loved husband, I am sure she will find him asleep in a chair and will go up and nudge him saying "stop snoring Frank!"  She will be with her mother Jane, who she missed every day since she died 57 years ago and my cousin Simon who was sadly taken from us in an accident at 37.  I am hoping too that she will look out for my three babies who did not make it, I know they did not make it much past conception, but they feel like babies to me. Its times like this when I wish I could have more IVF and have a child for them to live on in, but I am too old and the chances of success are very slim and along with the cost and trauma, but it does not stop the wishes.

As ever I am so grateful to my husband and daughter who are getting me through this one day at a time and to dear friend Pat who always seems to know what we need and is good at listening, bless you all.

For my last crafty creation for Mama I want to stitch a card, which can then be copied and used on the service sheet and Mama can take the card with her to her final resting place.  I was going to do a rainbow design but am now thinking about butterflies too, so not  sure what we will go for as other people need to be involved in decision.  I just hope that I will be able to see through the tears to stitch it.

Rob has been looking through photos to use for a service sheet.  I love this one from Emily's 1st birthday

Wednesday, June 11, 2014

So sad

I cannot type a lot at the moment as I am struggling physically and emotionally due to the death of my beloved grandma on Monday.  She died peacefully on Monday evening with my brother and his Wife and my Auntie and Uncle with her.  I had left to put Emily to bed, I know my Grandma would have wanted me to do this and I had been with her most of the afternoon and she knew we had all been to see her.  She was 94 so we have to let her go, although it is so sad.  As Emily says she has gone to be with Papa (my grandad) and Simon (my cousin) so she will be happy now, bless you Emily.

My Grandma, or Mama as we called her, was happy to have got to know her great grandchildren, Emily 7 and Benjamin 10 and she thought the world of them.

I have lost my last grandparent now, I was very lucky to have them all through my childhood and to get to nearly 43 before losing the last.

I spent a lot of time with Mama when I was a child and before I moved away.  She is were I get my creativeness from, she taught me to knit and always wanted to know what I was making.  I gave her the first quilt that I made

Mama always knitted, even in recent years when she could not see.  She knitted for all her grandchildren and great grandchildren and we all had granny square crocheted blankets.  It is only recently that I have had to learn to finished off my own knitting, because I always gave it to Mama as she could do it better.  I still have a long way to go to be as neat as she was.

I do feel sad that I did not see as much of her in recent years and was not able to be there for her due to my own health problems and looking after Emily, but I think she understood this.  The last thing she asked me to do was comb her hair, she hated her hair to be a mess.

Bless you Mama. Rest in Peace, we will all miss you so much.

Mama with Emily aged 2 weeks.

Mama with Emily and Isla, celebrating Emily's 6th Birthday.

Mama on my mobility scooter she thought it was great!!

Friday, June 06, 2014

Events- Updated

I keep seeing information about events and things I would like to attend, these are just a few of them.  I have no idea if I will get to do them.

But at least I have them here for reference if I have the time and energy to do some of them.

I am hoping to be able to go to the Birthday Bash at Our Handmade Collective, Grand Arcade Leeds.  Its a great little shop and we have followed their progress in their first year.  It is on June 14th and 15th.  We have Cat in the Hat theatre tickets for 14th and the 15th is Father's day and a cycling event in Leeds (meaning roads are closed and it will be busy), so attending is going to be tricky.  Then the 16th is my birthday and wedding anniversary, I don't want to be too worn out for that and to go out for lunch with my husband.

On my birthday we had planned to go to Quilting Museum in York, but have decided that it will be too much.  I am very disappointed as I have put a lot of energy into organising and attending things for other people's birthdays, but then can't do what I want for my own.  With having the busy weekend before and having things I need to be able to do later in the week its not possible to do what I want.  Treats get sacrificed when you have ME :(  Yesterday I got an email about an exhibition they have on at the moment which I am really interested in seeing about Period Quilts and Costume.  The exhibition runs until August 30th, but with demands of end of school term and then school holidays and Rob having a full time job its unlikely I will get to see it and its not really something we can take Emily too if I want to get a good look.  I find taking in the information quite hard anyway without having to take into account what Emily wants at the same time and I think she would be bored or want to look at different things to me.

Next is the Grand Summer Fair at Rivers Meet on July 20th.  We try to attend most of the events at Rivers as we know many of the people with stalls and its handy for picking up birthday presents and chatting with all the friendly people, not to mention there is a good cafe that has Gluten free products.  There is a fair this weekend too, the Spring into Summer on June 8th, but we can't go due to a family commitment.

Tomorrow are two events locally that we hope to attend, but the way I am feeling at the moment I think something will have to give, there is Rothwell Baptist Church 90th Birthday

and Emily's School Fair 

fingers crossed for the weather as this one is outside.

I would love to attend Yarndale which I keep seeing information for 

but events like this are very overwhelming and not very wheelchair friendly and it clashes with a family birthday, so it's probably not possible.

I have really got to go and rest now, but will update this page with other events that I would like to attend, even though most of liking to attend is as far as it goes.


Another local event is the Tiggypig Beads Closing Down Sale at Rivers Meet on June 28th.  Tiggypig used to sell beads in Rivers Meet, but left for another job, but still sold online.  Now she is selling off all her stock, and it says bargains to be had, who can resist a bargain!  Rachel the Tiggypig owner taught me how to make the necklace I use for my heading picture 

I have bought many beads from her in the past and although I have not made anything beaded recently the ideas are always lurking.  So now I have to decide if I go and find some bargains or stick with what I have and save money and energy, hmmmmmmm.

Thursday, June 05, 2014


This was written one night last week when I was unable to sleep and typed up by Rob and me.


There are several definitions depending on context:

1.       Bury or drown beneath something, especially water
2.       A strong emotional effect e.g. overcome with, dumbfounded, disturbed, dazed
3.       Defeat completely – trounced, beaten, overpowered

Even though these are referring to different things I feel then all, like I’m buried or drowning in things, also the emotional effect; overcome, disturbed, dazed etc.; the defeat; feeling beaten, overpowered.
Everything around me seems so overwhelming, be it daily routine, things to do, ideas, thoughts, noise, coming and goings, Emily’s demands and constant chatter, possessions, decisions. It all feels too much – drowning, overcome, beaten – day in day out.

Even in a quiet time, there is constant noise in my ears (tinnitus), constant chatter in my head (thoughts, ideas, regrets, decisions), constant sensations (pain, tingling, numbness) – it’s like a constant assault on my body and senses and that’s when nothing else is happening, which is rare.

I have so many want, needs, regrets, ideas and they are all jumbled together. I wish there was an on/off switch sometimes or even just a pause. For example, just taking this moment in time – it’s 11:30pm and all is quiet and calm. But I have an awful noise in my ears, tingling in my feet and legs, pain in my back, need to wee every few minutes, main in my chest, tingling in my face and hands, and a strange sensation in my throat. I’m tired but unsettled, conflicted by knowing I need to sleep and also trying too hard. But then I feel  I should try something else, but I know I need to be up and functioning in the morning; no chance to have a lie in, feeling dizzy and like I am moving even though I am still.

Moving on from this, there is all the stuff in my mind. Emily’s behaviour: what can I do to make things better; it’s my fault – she has needs I can’t meet; I should be able to control her; why does she do it; I need to do things differently; she must be unhappy about things; I can’t relate to her; she is better off without me; is she normal; it’s too difficult; why does she treat me this way; does she hate me; she is punishing me; I should be able to do what she wants me to do; why can’t I work it out; I hate been a mum; why it’s my fault for wanting a child; I can’t cope; I want to run away; I want to curl up; I want to do better; what does she want; what does she need; what am I doing wrong? And it goes on, and on, and on…

Then there is remembering things to do;

cards, quilting, knitting, beading, sorting out, writing, reading, website.

I have many ideas for projects.  What I don't have is time and energy and things drag on and on or never get finished.

The house is chock full of craft supplies, books, toys, games and so many odds and ends, we can never find things because there is so much to hunt through.  Sorting stuff out and cleaning out is so overwhelming, time consuming, full of decisions and regrets and can't be fitted in around daily life and daily life doesn't stop whilst you tackle something else.

There are always so many decisions to make- what to do today, how to keep people happy, priorities, best use of time and energy, what to eat, what to wear, what to say, then there isn't the time to do any of it or the decision is wrong ad has to be dealt with or things change and a whole new set of decisions need to be made and so it goes on. No wonder I am exhausted before I even do anything.

I am overwhelmed with feelings and emotions, sadness, frustrations, anger, distress, anxiety, regret, fear, shame, disgust, jealousy, anguish, guilt, worry, disappointment, restlessness, conflict, fatigue, pain and despair.

There is no room for happiness, pleasure, love, satisfaction, affection, tolerance, sleep, peace and calm.

Wednesday, June 04, 2014


I saw this the other day which about sums me up

An also saw a link to information about what things are effective rest and which aren't, it looked very interesting and thought provoking, but guess what can't find it now :(

Project Linus

Just a quick link for this site Project Linus

"a volunteer organisation. We aim to provide a sense of security and comfort to sick and traumatised babies, children and teenagers through the provision of new home made patchwork quilts and knitted/crocheted blankets, and give volunteers across to UK the opportunity to contribute to their local community."

I think its a lovely idea.  Wish I was quicker at making things.

I know there are other organisations who do similar things like Children in Distress who do similar for children in Eastern Europe 

"The Charity is dedicated to helping suffering children in the Balkans and Eastern Europe.  We work with the sick, the incurably and terminally ill, those with HIV AIDS or Autistic Spectrum Disorders, the physically handicapped and those who face a daily challenge for life as result of accident, infection, genetic or birth defects, those who daily race discrimination or religious persecution , the socially excluded, the desperate and disadvantaged children and families, the poorest of the poor."

CID have a yarn shop  too "

You can buy all types of yarn and crochet cotton etc at bargain prices (look under the heading 'Bargains' for the best buys).  There is a 'Garage Sale' once a week - keep an eye out for it, yarn can be bought as cheap as 23p per ball!

I hope you enjoy looking through the different yarns and I would welcome your feedback on it.  The yarns are shipped to you directly from Turkey (if you buy as a group, please don't be put off by the shipping costs - just add the shipping costs to your purchases and you will see that even with shipping you have still got a bargain and helped Children in Distress whilst buying it!)"

If anyone knows of other organisations I would be interested.

Tuesday, June 03, 2014

Meet Sarah

Sarah is my very patient quilting teacher.

What is your craft?
The traditional craft of patchwork and quilting.

How did you get started and when?
I come from a crafting family – and I have crafted for as long as I can remember. My mother, aunt and grandmother would encourage embroidery, sewing, knitting, papercraft – any craft you can think of. In 1991 I went to see Gillian Clarke talk about a quilt she had made depicting women’s work in the Middle Ages. I went because I was interested in women’s history. And I came away excited about the wonderful quilts I had seen. I started my first quilt soon afterwards, and I’ve been making quilts ever since.

Do you have a business name? What is it and how did you choose it?
My business name is Edward and the White Bear. I thought about several names for my business wrote a big long list and asked people I knew what they thought. This was the favourite.

What is your favourite part of your craft?
So much!! Choosing fabrics and threads. Working with gorgeous colours. Finishing quilts and using them – or passing them on to others who will appreciate them. And the sociability of quilting –whether I’m teaching or just sewing with others I enjoy spending time with other people who love the same things I love.

What is your least favourite part?
There’s not enough time in the world to make all the quilts I want to make.

Do you have a favourite thing that you make? Do you have a picture of it?
My favourite is ‘Frank’ – a wall hanging I made last year depicting Frankenstein’s monster. He hangs in my house like a family portrait!!

Do you have a website or Facebook page? If so what is the URL?

Do you sell your makes? If so, how and where?
No – but if you want to learn how to quilt then I’m your woman!!

What is your favourite craft product?
I have a pair of Fiskars scissors which I am very attached to. They have a non-stick coating which makes them easy to keep clean. I use them on anything and they seem to stay sharp – and they are just the right size for me.

What is your favourite craft supplier?
I love interesting threads for quilting. I use Superiorthreads as they produce a great range of different colours and weights. I use their bobbin fill ‘Bottom Line’ almost all of the time in my sewing machine. And I adore the vivid shades of their ‘Nature Colors’ polyester thread – I use a lot of this for free machine quilting. I source all of these threads through Barnyarns – a fabulous supplier who really know their stuff.

Personal Details
Sarah Eliza Humphreys
Age 36
Location Leeds