Wednesday, October 29, 2014


It's half term and very hectic.  I am in a lot of pain and feel quite ill.  I was in bed before Emily last night, but still didn't sleep and then was up early because of so much pain.

Monday Emily went to a friends for lunch and to play, so I got a bit of a break. Yesterday Rob finished work early to take her swimming.  Today we met a friend for coffee.  Tomorrow we are going to see Elves and the Shoemaker by Northern ballet, we have been the last 2 years and it has been great, we have seen Ugly duckling and three little pigs.  It is next to where Rob works so we can meet him after and there is an event in Leeds I want to go to after if I have enough energy. On Friday Emily and I are going to a family cooking session organised by the local children's centre and then she is having a friend to tea and going trick or treating.  Rob has just nipped out for the finishing touches for the cat outfit and I have to think of some games for them.  Emily is playing next door at the moment they have 6 grandkids so another makes no difference to them.  She keeps coming back when she wants something.  I need her to come in and do some homework, but I know it will be a battle and don't like to make too much fuss as it is the holidays, but also don't want it still to be waiting on Sunday night.

I have my wellbeing group on Monday, I will need it by then, but not sure if I will make it, there wasn't one this week thankfully.  One of the good things I have learnt from it is trying to find 3 positives in each day, not always easy, but they are there.  I have got a bit lost this week, but due to lack of time and energy, so I'm trying not to beat myself up about it.

Well better finish now have a pumpkin to carve when Rob gets back and some washing to hang up.  My PA is back and slowly catching up with things, I have missed the help, but not missed the noise and chatter, it was nice to be able to do my own thing and not have people in and out.

Wishing this was me!

Monday, October 27, 2014

Keep on smiling!

Well after a very hectic few days visiting family and travelling on my own with Emily I just have time for a quick post to keep up the positives.  I thought I hadn't got any as things had been so busy and hard work, but as ever there are things so it is worth taking a few minutes to remember them.

Thursday was very difficult as I had to travel by train with Emily.  Luckily we have a local station that links with the local station where family live, I cannot get into a mainline station without my wheelchair.  The local one was difficult enough as we had to go over the bridge its a long hard struggle for me, but Emily was very well behaved and helpful.  When we get to Sheffield we have to change platforms, which is quite a walk, but no steps and I just have to take it slowly, but not too slow as there is only 10 mins to make the connection!  We made the connection and the train drops us right next to the car park where my Mum was waiting to pick us up.  That is my first positive managing to do the journey its not easy and I can't do it on my own so have to put a lot of trust in Emily.  My second positive is that Emily was so helpful and well behaved.  Later in the afternoon my Auntie and Uncle came to see us at my Mum's it was lovely to see how much delight they got from seeing Emily so that is number 3.

Friday was hard work, I did get a bit of time to myself so I guess that's a positive and the other positive was being able to sort out some more of my Grandma's things as my Mum can't face it. I started reading a book written by an ME friend, Crushed, its a good and easy read.  I enjoyed her first book Karma.

On Saturday I got the final box to sort and found my Grandma's engagement ring that we had all given up for lost.  It was a great find and well worth going through all the bags and boxes to find it.  Number two was seeing Emily having fun with her cousins and having someone other than me to play with.  Finally Emily was very well behaved at the dinner table and ate her food despite many other distractions.

On Sunday a family celebration meant Emily got more time with her cousins and I enjoyed spending time with them too, they were all very good and a pleasure to be with.  I was however very grateful to get home and very grateful to Emily for helping me to have a bath and wash my hair.  So as I said there are always some positives.

Today I was grateful that the grass and hedges were cut ready for winter.  My PA came back after 3 weeks off, so I have help again which is much needed.  I got a break this afternoon when Emily was invited to a friends to play, don't think I could have managed without that.

So it's day one of holiday over only another four to go!

Wednesday, October 22, 2014

Why do I get all the best jobs?

Today I needed to sort out the pets.  I didn't do as much yesterday as I wanted to, so its a bit of catch up today even though I should be resting for a busy day tomorrow, but life doesn't stop to fit my needs.

I got Emily to watch the hamster in his ball whilst I cleaned the cage out, this involves getting rid of old sawdust, bedding etc and washing and drying the cage base and ramps and house, then adding new sawdusst, putting cage back together and adding new bedding and food.  I always manage to get sawdust all over the floor, didn't do too bad today.  After sending Emily off to school (it's walking day) I cleaned out the cat litter tray and gave him fresh cat litter.  Next up fish tank, rinse the filter out and clean the air tube, simple enough except I drop the air tube in the bin where I had just put the dirty cat litter and sawdust and of course it dropped right to the bottom so I had to don latex gloves to get it out and give it an extra good clean, yuck.  Then empty the bin to the outside bin.  Now I love my pets, but actually if everyone had their own the cat is mine, the hamster is Emily's and fish are Rob's, but there is only me looks after them, feeding them, cleaning them and anything else they might need.  I don't mind as I like animals but it is hard work for me and I feel like even the pets needs come before mine.

I decided after all that to sit and do a bit of sewing on my new sewing machine, a huge extravagance that I feel guilty about, but my other machine didn't work that well and wouldn't do what I needed to do at quilting, so after much deliberation and discussions about how I couldn't justify the cost I ended up buying one.  If it had been up to me I would not have bought it as I think its too extravagant.  It arrived yesterday a Janome XL601.  Its amazing and the free quilting kit worth £99, 50x1000m of thread and 5 pairs of scissors make it much more of a bargain., I was amazed opening it all.

I decided to have a play this morning as machine still out on dining table.  I got the Olaf window I made on Friday that I was not happy with and made some alterations he is still far from perfect, but its better.  Then I framed him in a box frame.  I was going to give it to Emily for Christmas, but think I will give it to her today as she got a good report at parents evening, even if she was a little monkey when we got back home.

Saw this beautiful quilt kit on my facebook feed this morning.  

Others I have seen can be viewed on my pinterest page, there are so many gorgeous ideas.

Well I am totally wiped out now and still have a delivery to wait for as I missed it yesterday, I have no idea what it is, but can't miss it again.

Ebay listings

I have listed a couple of things on Ebay in an effort to sell and get some of my money back.

Red coat and Orange occasion dress, really hoping they sell but not too hopeful.  Donating 10% of sale price to ME Research

Tuesday, October 21, 2014

A few plugs!

Just a quick post to promote crafty events coming up in Leeds with some of my favourite crafters present.

A must is the Christmas launch at Our Handmade Collective on Thursday 30th October 5 till 8pm.  There will be mulled wine, guess I will be driving home after that.  Also mince pies and chocolate, gingerbread and fudge, well Rob will be happy, he can do the tastings whilst I spend his money!

I know it will be a great event and everyone will get a very warm welcome.

Sadly I will be missing another of my favourite events the handmade fair at Rivers Meet this Sunday "All our talented crafters bring their crafty wares to this fair. Great range of handmade goods from local stallholders ranging from jams and preserves to jewellery, pinnies and cushions, stitchcraft and knitting"  But hope to make Christmas Winter Wonderland  at the same venue on November 22nd and 23rd.  The event promises "Marvellous Christmas gift and craft fair over 2 days in the cafe and the marquee. This one is the big one. New exciting crafts and exclusive offers. Ideas for everyone. Lovely things you won't find on the high street without the bother of fighting with the city centre crowds." Its always well attended and brilliantly organised by Margaret.  

Another one near to me, although I haven't been before is Belle Isle URC fair on November 8th sounds great Games for all the family, tombolas, raffles, fun and refreshments +++ great gift and craft stalls with present ideas for everyone at great prices. Treats you won’t find on the high street.
Santa’s coming – make sure you do too!

A well attended event locally is the Christmas lights switch on with market stalls on Commercial Street and Christmas fair in Blackburn Hall during the day.  This year its on Saturday 22nd November.

Finally if you fancy something a bit different for your Christmas do, how about Gluten Free at 2 Oxford Place or New Year's Eve.  Booking is essential as it gets really busy.  I don't usually bother with going out for something before Christmas as it is so busy and my options are limited, but I am tempted by this.

I don't really want to think about Christmas I find it a busy and overwhelming time.  Yesterday I was asked what I am doing for Christmas!  Usually by the time the day arrives I am ready to go to bed and stay there for the festive season.

Payback time!

It was a busy day yesterday with Physio after school drop off, which meant I had a relatively pain free day, but I can feel it this morning.  I went straight from there to 5 ways which over ran so I didn't get home until 12.30, having left at 8.30!  I had been driving, talking, concentrating so it was a lot for me even though I had not ventured far from home or done anything really physical.

My first positive was having physio, its not always comfortable, but nice to get all the knots removed and a bit of me time.  Second positive was getting to 5 ways and taking part, actually said quite bit, not like me.  I also managed to hear a bit better in group exercises by turning up my hearing aids, I know that might sound like an obvious solution, but everything becomes louder and can be quite startling or overwhelming.  We were talking about making small steps towards our goals.  I know I always take on too much and set to big a goal so set myself up for failure or disappointment.  The girl I was talking about was talking about losing weight, its easy to see that she needs to set small targets and chart her progress etc and not have an unobtainable goal like losing a ridiculous amount of weight.  We had to choose something we wanted to make small steps towards.  Everything I thought of seemed to big or difficult to break down.  I decided just for the sake of something to spend more quality time with Emily and realised that it doesn't have to be something big, just making time for her, listening to her, sitting with her, not trying to do other jobs at the same time.  So we will see how it goes my first attempt last night went well.

When Emily came home we had a chat about a few things and then went to wrap our shoe boxes for Operation Christmas Child, she was excited about doing them and was wondering where they were going etc and talking about the sort of children who might get the boxes. They had a talk about them at school and she said many people had said it was a silly idea.  I know its not a cheap thing to do, and I collect things throughout the year.  If people are unable to afford to pack a box it if you have several children all wanting to do one it must make it hard that's fair enough, but saying its not a nice idea if a bit cruel and makes the ones who are doing it feel they are in the wrong or they don't want to admit to doing it.  Maybe schools, churches etc could suggest making group boxes so that there is little cost involved rather than telling people they need to make one each.  It was also sad to realise that whilst we are doing that for children in other countries there are many children in our own country who would also benefit.  So filling the boxes and having some Emily time is my third positive.

Later on I managed to iron a few of Emily's clothes whilst she was at gymnastics as she needed a uniform for today.  It's last day of term tomorrow and they have a non uniform day.  Thursday and Friday are training days so it makes the holidays longer.

Due to having such a busy day and having a cold I did not sleep much, the ME allows you less sleep the more tired you are, not very helpful.  I have lots of jobs I need to do today, but also need my energy for parents evening later.  I also waiting for a delivery which is due during my rest time and I don't want to miss it as I need to sign for it, so again not very helpful.  I will really have to work out what are real priorities and leave the rest.  I am still without my daily help so am doing things I don't normally do and expecting to still be able to do other things.

As usual I have too many things waiting for my attention or things I want to do for me.  I haven't even looked at my Child Behaviour course work yet, its a good job there is not a time limit, but I would like to get going on it soon.

I have to be sensible now and have some rest especially as I won't get it later, it's so frustrating.

Sunday, October 19, 2014

Sunday positives

Feeling yuck again and was not impressed at been woken before 6am by a flying cat, I thought it was Emily who had jumped on me, but it was just Timmy wanting his breakfast!  Then of course the pain kicked in and I seem to have picked up sore throat feeling like a cold brewing.  Emily had a cold past couple of days, but it had gone today, but now she says she has sore throat and a headache and dizzy!  I never know what she has got though as she will just copy anything she has heard anyone else say, but I suspect she may have sore throat and headache as that's what I have got and there are so many colds going around.

Anyway my Sunday positives, getting out in fresh air, feeding ducks and looking for leaves and conkers.  Didn't find any conkers.  Emily insisted on shouting duck every time she threw a piece of bread in for the ducks and the ducks were swooping in and skiing on the water. The sun was shining and it was quite warm and the autumn colours are lovely.  Secondly getting a decent rest today, not managed that for a few days.  Finally snuggling up to watch Strictly with Emily without her fidgeting and talking all the way through.

Emily was playing with her playmobil this morning, the rescue helicopter and hospital set, what a fiasco though!  First the helicopter landed on the casualty, then the ambulance turned up with another patient on board who just got thrown out and then Ambulance had no crew so had to go back to hospital to fetch them and no one bothered to look at the casualty!  Then the hospital ran out of beds and people were having to lie on the floor!!  They only had one bed and a baby incubator that doubled up as an xray machine.  A baby got sent home and left in an empty house, the ambulance knocked someone over!  But then people got taken by ambulance for check ups!  The next thing the hospital was closed and a vets opened up and treated a hedgehog that had been knocked down and hurt its nose, it had to stay in for 3 months because it had a temperature, I won't tell you where she took its temperature!  Well they call it imaginative play, but it all seemed a bit realistic to me!!

Here are pictures of the Elsa flip it doll I made, its not great, but not a bad effort and Emily likes her.

Pack up your troubles

We went to Emily's school presentation of this terms work on Friday, they have been studying WWII and Chronicles of Narnia.  One of the songs they sang was Pack up your troubles which originates from WWI.  If the soldiers could do it why can't I?

Pack up your troubles in your old kit-bag,
And smile, smile, smile,
While you've a lucifer to light your fag,
Smile, boys, that's the style.
What's the use of worrying?
It never was worth while, so
Pack up your troubles in your old kit-bag,
And smile, smile, smile.

Saturday, October 18, 2014

Quilt class and Positives Friday and Saturday

Yesterday was my quilting class, with Rob tagging along to carry things and drive me there I arrived ready to get on with my quilt.  Unfortunately my sewing machine seems to dislike the sparkly fabric and would not sew properly through the fabric and wadding.  After many attempts and many alterations to machine setting and re-threadings etc it was decided it was not going to work.  So my options were hand quilt it, that would take me forever and be quite hard work for me or try Sarah's machine, which she will bring along to the next class.  Thankfully I had got a couple of other things to work on, so made the Olaf window picture, will post photo another time its too dark now.  Sarah had ideas for Christmas projects which I liked and I do have some Christmas fabric to use up, but Rob says I should do one thing at a time, hmmmm, we will see.

So my positives for yesterday were actually getting to the class as I was sure I wouldn't be able to with how I had been during the week.  Second is getting the Olaf made.

In the evening I got chance to ask Rob to look at the Elsa knitting pattern where I had got stuck on the sewing up as it was not clear how to do it.  Rob worked it out and I managed to finish off the doll, its a bit wonky, but Emily likes it, so that is my third positive.  Again I will post a picture another time.  Of course she now wants Anna ASAP!  And I have an Olaf pattern too, always so many ideas!  One thing at a time, never.

This morning whilst Rob waited in for a non existent collection, I took Emily to the local library to look for books about Seals, she has to do a project for school over half term.  Then she wanted to go in Morrison's for lunch.  There was nothing I could eat so I just had a drink whilst she had her kiddie meal.  It was nice to get out just the two of us and she behaved well. So that is my first positive.  Things went a bit downhill after that, but there was a lovely pink sky at sunset and I had my hair washed and dried this morning so they are my other two for today.

Friday, October 17, 2014

Meet Maggy

Maggy makes great cushions, aprons, bags and other items using beautiful fabrics.

 What is your craft?                          


How did you get started and when?  

About 4 years ago, I bought some cushion covers, looked at them and though I could do better.

Do you have a business name?    What is it and how did you choose it?   

Cotton Bobbins, Hubby picked it

What is your favourite part of your craft? 

Putting zips in.

What is your least favourite part? 


Do you have a favourite thing that you make?  Do you have a picture of it? 


 Do you sell your makes?  If so, how and where? 

Yes I sell them at craft fairs

What is your favourite craft product? 


What is your favourite craft supplier? 

EBay for fabric

Personal Details
Name Maggy Hunt
Age 61

Location  Sherburn in Elmet

Positive Thinking

This was on my Facebook feed today, I need to try and do as it says.  Off to get ready for my quilt class :-)

Thursday, October 16, 2014

Going Mad?!

I am going mad with pain and lack of rest, its horrid, but I know I shouldn't complain.

The coat saga continues.  The cost to return coat to Hong Kong would be £8 and I would get a full refund, but company are not keen for me to do this and have offered me £10 and to keep the coat telling me to sell or give away.  This means I am about £16 out of pocket and I am sure it would not sell for that much.  Rob tells me not to worry, but its all a lot of money to me.  Although was put a bit into perspective last night when looking at fireworks in Morrisons and to have anything worthwhile it will cost at least £20 and Emily of course wants the £40 pack!!  And that's just to go up in smoke, but we pay it.  But then complain that the cost of the cups of tea and coffee in the cafe have gone up by about 10p, its still far cheaper than anywhere else.  We only went in to get Emily some black leggings for her Halloween costume, they were more of a bargain, two pairs for five pounds!  Rob says I can go and look at coats so I can choose one I like and can try on, but it has to be when we can get Emily looked after so not until we see family and then can't be out too long as we don't see much of them.  Is it really worth it?  My head such a mess at moment a coat feels like an unnecessary item really, I don't know what to think or do.  Only want a coat because I saw some I liked and it gives me something mind numbing to look at.

No rest again today too wound up and in pain :-(

Just realised that I have not been making a note of my positives this week.  

Now I know why I can't hear properly my hearing aid battery was running out, its been bugging me for days thought my ear was blocked! Ah that's better I think.

I have just gone to get the positives sheet out and found I have made no notes this week at all and I was also supposed to be doing a mindfulness relaxation each day and commenting on how it went and making my small steps to change, oh dear, its a good job we don't get marked on homework!

I had made a note of Monday's in highs and lows.  Tuesday's were lost in a haze of pain and fatigue, but Emily went to bed easier and I went to bed early myself.

Yesterday was a bad day and again hard to find positives, but I got a lovely message from a friend after writing my blog, it was very sweet and made me cry.  I also got a card from an ME friend who is much worse than me and I know its such an effort for her.  Her husband wrote the post meet Michael which got 204 views, my average views is about 15!  As usual for a Wednesday there was no school run for me so that is always good.

I am already making a note of today's before I forget, and its only 3pm!  This morning I noticed the beautiful patterns made by the raindrops on the hedge and pointed it out to Emily.  Although it has left me feeling very unwell I am proud of making up Emily's bed and hope that she will sleep in it as promised.  I got a lovely comment about my quilt after the picture on my blog, so even in a bad day good things do happen, they don't need to be big or dramatic, sometimes its easy to forget that.  Just to try and make myself feel better I finally got the donations made to cover the cost of sending the Operation Christmas Child shoe boxes.  I have been collecting things all year and we have made up three this year.  I also donated to liME in support of my friend Sally who has given up chocolate for Stoptober see Stop it.  Wow I should pat myself on the back, gently of course!  I also donated to St Lukes Hospice festival of light earlier in the week in memory of my cousin and grandparents.  All good causes and more important than a coat.


Well having worked myself into a right state yesterday, had very little sleep and have jobs that need doing, plus need energy for quilt class tomorrow, I am not feeling too great today, again!  Why do I worry and get myself worked up over things I have no control over?  I am feeling anxious and on edge all the time.  I feel like I am waiting for something awful to happen all the time, but then whatever happens cannot be changed so why worry.  Looking back we have been through all manner of traumatic events and come through them so why worry about what might happen and how to cope?  Its not something you can switch off though, wouldn't that be easy?!  Life goes on whatever you are faced with and you deal with things as you go along.  I think sometimes its the quieter times when we feel less able to cope as all our resources have been used up at the more stressful times and we become weak and vulnerable and worry about the next problem, rather than making the most of the here and now.  One way to keep worries at bay is to be active or keep busy, but with ME that is difficult and we pay the consequences of what we do, but I think we also pay the consequences of worrying and trying to cope.  I can suffer as many symptoms after an emotional day as physical one, although days are not usually one or the other, so its difficult to separate and really know what caused what.

I am trying to get Emily to sleep back in her bed now the nights are getting colder, so gave her a new duvet cover that I was saving for Christmas in an effort to make it more inviting and I let her choose the sheets she wanted on and gave her the furry mattress cover off the other single bed!  All well and good except I had to make the bed up, it has taken me most of the morning and left me feeling sick, dizzy and shaky, not to mention in pain and tired.  Rob did say he would do it, but Emily wanted it ready so I thought it best to get on with it rather than saying no and putting her off using it and she will be able to show her friend who is coming for tea.

I wanted to get a bit of my quilt done before tomorrow, but its not to be I'm afraid.

Oooo just realised I made cup of tea about half an hour ago, must go and find it!  Whoops rather stewed as it was still in the teapot!  Its my favourite earl grey and the leaf tea is so much better, I use each pot twice to get my moneys worth!!

The quilt is now ready to be made up, spent most of the last session on the floor pinning it together.

After pinning it all together I decided the cat needed some eyes, so asked the advice of my friend Pat and some of her crafty ladies, they agreed and we decided on these buttons.

I need to unpin a bit so I can get my hand in to sew on the buttons, will try and get that done later.

I also need to ask Sarah about my next two ideas the Olaf window picture for Emily.  I wanted to make one like this 

but its quite a lot of work, so think I will got for simpler design like this

with the Olaf panel I have bought 

My other project is a cat picture for my bedroom, like the cat on the quilt but in blues, we printed a mock up, but I can't find it or the computer file :-( Spent 10 mins looking again and found it, I hate losing things and spend half my life looking for things!

I love him already, hope it looks this cute for real.

I am lucky that Rob has booked day off tomorrow to come and help me carry stuff and drive me there and listen to any complicated instructions, but I am disappointed that I need his help and that he is using his holiday to do it rather than something for himself or something more useful.  In the afternoon we have to go into school to see what Emily's class have been working on this term.  I am looking forward to it, but know it will be a difficult day.  This said I had better go and get some painkillers and some rest.  I will try and catch up with my positives later.

Wednesday, October 15, 2014

Thank you

Thank you to those who read my feeling guilty post and for the kind messages, I know you all have issues of your own.  I am having a grotty day, feeling sorry for myself and trying to get things done and it really gets me down.

I also read this article earlier about a girl with scoliosis.  I was diagnosed with Scoliosis at 13 and had to wear a back brace through my teens until I stopped growing, it didn't reduce the curve but stopped it getting worse.  My curve is an s shaped curve so total curve is only 16 degrees (I think, its a long time ago) my pain is mainly at the lower curve where the muscles are stressed I also have a lot of shoulder and neck pain nearer to the top curve. Even though the over all curve is not that much I do look wonky and tend to cover up.  I was lucky not to need surgery, although I was told I could have it if I wanted it!  The brace was very bulky and heavy, I couldn't bend and had to wear all the time, except in bed, it ruined my clothes, rubbed my skin and was very hot in the summer.  I know I got off lightly, but it didn't feel like it at the time.

The girl in the article is a great inspiration and it is a shame about peoples comments and perception of beauty and perfection, its a cruel world we live in.

Feeling guilty and pathetic

How do you cope when you hear about other people being ill with serious illness? Does it make you feel guilty? And like you are making a fuss over nothing? And that you should be able to get up and carry on like others do?

My thoughts for today.  Many people have awful illnesses or problems to deal with and still carry on with life no matter how hard, so why can't I do that?  All the people who help me have health issues of their own and are often unwell and or in pain, but still work for me, whilst I have to rest and be helped.  Do I just need a kick up the bum and to get on with things?  Would I be better if I had a job, stopped feeling sorry for myself, got out of the house, had a hobby, played with my daughter etc, etc?

All I know is that simple activities like having a bath, ironing a few clothes, making a bed are exhausting and leave me in pain.  I do try and always push beyond my limits as I don't want to let people down or look bad.  But its not as bad as other illnesses is it?  How can other people work through the pain, the fatigue or other symptoms and yet I need to go and rest and even then don't feel much better.  A friend of mine has been having cancer treatment through the summer, she is really positive and has been carrying on as much as she can despite fatigue and demands of treatment and hospital visits. I haven't even been able to summon the time and energy to go and see her, she is 130 miles away, not around the corner, but even so I feel bad.

I want to be able to work and carry on and lead a normal life, I feel like I miss out on so much and that other people must be so much stronger than me.  People must think I am so pathetic.  I don't have to have any treatment or go to hospital appointments or have lots of tests all I have to do is live with a host of symptoms, surely that shouldn't be so difficult and I could do more.  Make more of an effort to get things done or finished; be with people; be a better mum, friend, wife, daughter etc; do things for myself instead of getting help; stop making excuses and get on with it.  But I do try and I am floored by my efforts, so how can others do it and I can't?  There are so many jobs I would like to do and people I would like to help, things I would like to study or make, things I want to do for and with my family.

I feel like I have wasted so much of my life and not made anything of myself, everything I try seems to go wrong, but is that because of me, not the ME?  Is it my attitude that is wrong? Is it because I don't try hard enough, because I give in, because I can't cope with pain and fatigue and other symptoms.  

I get upset watching Tv programmes like Bake Off or Masterchef, all the contestants seem to be a similar age to me (43) and want a change of career or a challenge as they have reached a certain age.  I don't have a career and my only challenge is getting through the day.  Or if I watch Homes Under the Hammer people have the money to buy a house, they do it up along side a full time job and then sell it on and make a profit.  The houses always look great and very few people fail.  When we do anything in the house its always basic and functional, nothing matches and we are lucky if it gets fully finished or finished in the way we anticipated.  Maybe I shouldn't watch these sorts of programmes, but they are easy to watch, don't need much concentration or stamina to watch.  I don't watch a lot of TV as again there is little time and energy and it is surprisingly difficult with concentration and hearing issues, not to mention little control over what is actually on.  most of the stuff I watch is recorded so we can watch it in peace after Emily goes to bed, but by then I can only manage to watch about half an hour even of easy TV.  

You hear of people with terminal illnesses running marathons or fundraising for a great cause.  I would never be interested in running a marathon even if I was able to, but a long walk would be good and fundraising is a great thing to do as well as raising awareness.  They don't sit there saying how bad things are and how life is so cruel, they get out there and get on with it and enjoy what they have. What stops me from doing that?

I need to be very pathetic now and go to rest.  I still haven't got all the jobs done and I am very unsettled so don't think it will be a restful rest, but I know if I push on I will be in an even worse state when Emily gets home.  I know 90 year olds who can do more than me, makes me feel so pathetic,  I know many don't have the luxury of being alive or reaching old age so who am I to complain about being able to feel the pain, fatigue, dizziness and other symptoms or to have the chance to worry about them and wonder what life holds for me.

When I started this blog I had great aspirations for it, I was going to make lots of informative posts, create lots of craft items to show, but all I seem to do is write about how I feel and not achieve anything.

Perils of internet shopping and lifts!

Internet shopping can be great, easy to get things at the touch of a button (too easy sometimes), which is fine if you know exactly what you want, but a pain if you need to see the style or fit or quality of something.  I have been caught out so many times it puts me off shopping.  I am always wary of spending too much and often place items in my "basket" and then delete them all as I can't justify the need.  This week two items have arrived that I am really disappointed with a cardigan
that was in a sale, the full price was £39.99.  Thankfully I only paid £12.50, but when it arrived and I put it on it was itchy, poor quality and badly finished and smelly and huge, its a size 8, but think it would fit a 16!  I don't mind it being big and baggy,but.....  In my frustration I put it to wash to get rid of the itching and smell, I should have sent it back, but I am stuck with it now.  Another order arrived this week too a coat , and I am very disappointed with it, it doesn't fasten up to the neck and gapes, the colour is much duller than I wanted and the shaping is strange, not at all as it appears on the model.  I am trying to return the item, but as it has shipped from Hong Kong I am having difficulty.  I was not aware when I placed the order that it was not being sold by Amazon and is not covered by their returns policy.  As usual I had tried to get something cheaper than the item I really wanted as its only for taking Emily to school and the like and was not worth paying a lot for, and I didn't want to pay ridiculous shipping prices, but I got caught out as usual, there is no such thing as a bargain! The one I really wanted was this one,

 but wasn't sure on the sizing and it cost more than I wanted to pay and again is not sold by Amazon.

I have found some others now, but am stuck with the one I don't like :-(  This one at cotton traders
and this one at Bon Prix in orange of course!!  And some very expensive options Nikita-Acorn-Parka


and ASOS or Macy's

So all in all rather fed up I only wanted a nice bright coat to cheer me up on these dreary mornings and keep me warm and ended up with a drab, cold one that I won't wear and can't return so stuck with my old one which is old and black!

A few weeks ago I posted about dreams.  last night I had another of my recurring dreams, one about being in a lift that never goes to my floor or goes sideways and like a roller coaster.  Dream Moods says

"In general, the up and down action of the elevator represents the ups and downs of your life. It also symbolizes emotions and thoughts that are emerging out of and submerging into your subconscious. 

To dream that the elevator is out of order or that it is not letting you off symbolizes that your emotions have gotten out of control. It may be a reflection of your life or your career. You are feeling stuck in some aspect of your life, whether it is your career, relationship, etc.

To dream that the elevator is moving sideways means that your efforts are counter productive. You are going nowhere in your work, relationship or other situation."

Sounds about right to me :-(

I rather lost track of my positives yesterday a day full of pain, fatigue, dizziness and general yuckiness.  Thankfully Emily went to bed without too much fuss unlike the night before, but I had to leave Rob to deal with her anyway after I read her story as I needed to go to bed myself and if she knows I am in bed she settles down as she knows she isn't missing anything.  I was still awake at midnight though so didn't get any benefit from the early night and have lots to do today. Already worn myself out typing this, ironing Emily's uniform, sorting out washing and stripping off one bed and slicing up home-made bread.  Still need to clean out hamster and wash my hair at the very least.  Perhaps if I take hamster cage in bath that will get both jobs done, hmmmmmmm.

Bread made yesterday from Helen's Quick Seeded Bread Mix and Brilliant Scone Mix.  My attempt on Monday at Pumpkin bread using the Brilliant Bread Mix failed to cook :-( another waste, I will never save any money.

Tuesday, October 14, 2014

Highs and Lows

A quick post today as feeling rubbish.

My positives for yesterday were hard to find, but I got to 5 ways and took and spoke out in the group so that's two positives.  After that things fell a bit flat as I felt awful and still do.  It was nice to come home to a clean house as the temporary cleaner had been in, so think that's my three.

In the group we talked about making small steps and appreciating gradual change and noticing the small things.  I think this is something I need to focus on as I always set my sights too high and set goals that are not realistic.  I have to accept that I have limitations and set goals within them without seeing that as failure.  I was impressed by an article the other about focusing on the little things that we can do, rather than the bigger things that we are not able to do, stress mindset and chronic illness.

We finally committed to having a loft conversion.  We have talked about it on and off for years, firstly because we wanted another child, but then that never happened.  Now we have decided to have it done to give Emily her own space as she grows older and to be able to spread out a bit, the house in very cluttered.  It will be a long process as it won't be built until next year and then it will take us ages to get it finished off and fitted out, but hopefully this time next year we will be almost there.  Its not the ideal solution as we would like more space rather than extra rooms, but we can't expand what we have, but hopefully spreading things out a bit will make a difference and it will also mean that hopefully we don't have to buy too much furniture.

I need to finish now as getting to sick and dizzy, not to mention tired.

Monday, October 13, 2014

Positives end of week 3

Three weeks of looking for positives, surprised I kept going.  Many of the day I think nothing positive happened today, but if I think a bit something usually springs to mind.

So for yesterday my positives were not waking up till 8.15am!  I am usually awake by 6.  Getting some jobs done, well supervising Rob getting some of them done!  Going out for lunch to 2 Oxford Place a totally gluten free place in Leeds.  Its great to be able to eat most of the things on the menu, I had mushroom soup followed by scone, usually baked goods are no go.  There is a daytime menu and evening menu and Sunday menu.  There are daily scones, cupcakes, tarts, cakes and cheesecakes.  Luckily we had booked a table as it got very busy.  It was only our second visit, but well worth the drive into Leeds.  Looking forward to trying evening menu some time and Christmas and New Year menus look great.  Sad to see they will be closed over October half term and for two weeks over Christmas and New Year, but they work hard and deserve a break.  They also run crafternoons

They sound great, but too long and wrong time of day for me.

Had to laugh last night when I went up to bed and went to check on Emily to find 

She has been sleeping on the floor for weeks, but its the first time teddy has joined her in the sleeping bag!

Saturday, October 11, 2014


Its been a very frustrating day today.  As usual I was up early, its nice to get a bit of peace and quiet before anyone else gets up, but I just started looking at something I needed to do and Emily got up, so that was that.  I got her breakfast ready and then it just sat there for half an hour before she even touched it and then left all the crusts and more besides, she has rather a generous boundary on crusts!  I decided to have a bath whilst Emily and Rob finished their breakfast, but then had to chivvy them to get ready.  I wanted to get out in the sunshine, but the only things to do were chores so we went down into the town and got local jobs done; bottle bank, chemist.  We did go for a drink, but it was noisy and although Emily asked to go, she then played up so we ended up coming home.

Meal times are very frustrating I have many restrictions and basically have the same breakfast and lunch 7 days a week.  I fancied something a bit different today, but not having been shopping or able to go anywhere it was the same thing again.  My diet is very boring, no wheat, no yeast, limited dairy, limited sugar, no fish, no caffeine and no alcohol.  Gluten free food is very expensive and not very appetising much of the time.  I spend a lot of time looking at recipes, but never have the time or energy to make them.  I have finally found a yeast free, gluten free bread mix which is quick and easy to make from Helen's. Even then I have to get someone to help mix it.  After tears and frustrations lunchtime was the same old buttered toast for me, bread not big enough to make sandwiches and has to be toasted or it's too dry. Again Emily left a big chunk of hers even though its what she asked for and the same again at tea time.  Rob made some nice cauliflower muffins to go with bacon for us, but Emily asked for pasta which he made especially for her.

After tea Emily wanted to play on the wii, not a good activity for me, I can manage some of the easier activities on a good day, but not for long, but today she was boxing and cycling, wears me out watching, so I ended up picking up things that had been left out and tidying up generally, not good use of my energy, but I can't sit and do nothing just in case someone wants me.  I end up pottering about doing bits of things as it doesn't require any concentration, but I soon run out of energy and then can't do nice things with others and then come across miserable all the time.  Well its not an appearance today its true, I just get so fed up.

Weekends are hard as I am stuck in the house all week, only get out to do school run normally and then at weekends I want to go out, nothing adventurous just fresh air and change of scenery, but there are jobs that need doing and Rob and Emily have been out all week so are happy to stay at home.  They get choice for their dinners and a change of scenery every day.  I could go out if I wanted to, but then I wouldn't have the energy to do school run and look after Emily before and after school so have to stay in.  I also have to be in for people who come in to help, but I find that tiring and demanding and an invasion of my space at times, even though I am grateful for the help

Hoping for a nice evening watching Strictly with Emily, but she had other ideas and talked through the dances so I switched it off, it was too difficult to follow.  We did play a game for a while, then she decided that she wanted to play in a cardboard box and that I should run around the room after her, yeah right!

I feel like I am being awkward and ungrateful all the time.  Last night Rob went out, I had paid for him to go to a curry evening, but then realised it was for our wedding anniversary, so he went out and I stayed in and put Emily to bed, hmmmmm.  We never do things together.  When he came back he said he had booked for both of us to go to the next one which is a Diwali celebration, but Emily is going too and its late at night and I don't know what I will be able to eat, so it rather spoils the thing for me.  Ah well he did try, but I end up looking ungrateful.  It's always the same if we go out and tempers get frayed and things get spoiled.

Rob is still settling Emily into bed, so looks like another evening where I don't get to see him, I think we speak more by text and email than we do face to face.

I'm going to stop now as I am making more mistakes than I am getting right so it takes forever to type anything.  Apologies if some of this may not make sense my head is full of cotton wool rather like this I think

except I think, but it doesn't work.

Saturday positives

Its been an all round rubbish day so positives are hard to find.  So here goes, it was nice and sunny this morning.  I actually got a bit of sleep at rest time.  Emily and Rob bought me some flowers when they went shopping.

Think it will be an early night tonight and hoping for a better day tomorrow.

Friday Positives

Yesterday was not a good day, I felt awful and today is not looking much better, but here goes with positives for Friday.

Emily was eager and excited to do her homework, was still wanting to do more at bedtime!!  Pat gave us a lift home from Friday club as Rob was out. Having my hair washed it was looking horrid.

Having a mixed start to Saturday, the sun is shining, but I am in pain.  Had a quick hug with my little furry friend, but then found a dead fish in tank!!

Found a picture of Emily standing on her head, don't ask me why she is!

All part of a normal day around here!

Friday, October 10, 2014

Positives week 2 days 4 & 5

I am feeling rather sick and shaky today, not really surprising as still fighting virus and been doing extra things, but I could be much worse.

So my positives, appreciations for Wednesday were, not having to do the school run, its Emily's day to walk with Donna, luckily they missed the rain.  It was nice for a change to have no one coming in, its unusual for me to have the house to myself all day and to be able to do things when I want to.  I had a chat with Emily when she got in from school, quite unusual as she usually just sits in front of TV.

For yesterday I was grateful to Annie for taking Emily to GFS and I actually accepted the help instead of insisting on doing it myself, I didn't accept all the help though as I insisted on picking both children up, but it was a great help to me to get one way sorted and I kept a bit of independence too by picking them up and the girls seemed to get on well.  With Emily at GFS and Rob in London I finally got my knitting started again with a different pattern. I have been trying to do it since April, just need to keep fingers crossed new pattern works as I have adapted it to fit the pattern I have.  Trying to fit this heart pattern into the tunic pattern as the tunic pattern part is too complicated.  Just discovered that the pattern link has disappeared, luckily I had it printed out, phew!

Finally I managed to get Emily's uniforms ironed, I don't usually iron as it's difficult for me.  I did manage to knock over a full cup of tea with the ironing board so it ran all down the stairs!!  The rest of the ironing is piling up, but we can manage without for a while.

Thursday, October 09, 2014

On the scrapheap!

Thank you to the man at the door yesterday who asked me if I was retired!!  I know I look bad sometimes and am getting old, but I am 20 years off retirement age and how can you retire when you have never had a career or a proper stable job?

It is depressing though as 20 years ago I thought I had it all ahead of me, although I had already had many disasters.  I had health problems whilst still at school and had a reduced level of education and finally got 2 CSE's and 3 GCSE's in English, Childcare, French, Human Biology and Maths not a great achievement.  I left school and worked as an office junior for 2 years before deciding to train to be a nurse.  This was before nursing became a degree subject and it was basically a full time job along with studying.  I trained in Derby and loved it, but 2 1/2 years into a 3 year training my training was discontinued due to a back injury.  I was heartbroken and to this day I regret not trying harder to carry on and challenging the decision.  So in one fell swoop I lost my job, career, accommodation, independence and car.  After a period of unemployment I got a job as a Contract and Quality assistant at Sheffield Children's hospital.  A totally meaning less job title which involved assisting junior Drs with clerical work, liaising with other departments and and data collection. It was a trial job that 3 people were recruited for after a short time the other 2 left and weren't replaced so I did the job of 3 people.  Sadly the job was only a one year contract and there was no funding to extend it, so there ended that job. Whilst working at this job I also studied for childcare qualifications by correspondence course and got a grade A in one of the courses!!

At this point I decided to go back to studying and try and start another career path, so I enrolled on a Dip. HE course in Playwork, the first year in Sheffield and second year in Leeds with option to do a 3rd year and convert to a degree.  Whilst studying for this I did several unpaid work placements with children with special needs, including the blind, autistic children, developmentally delayed children and physically disabled children.  I also had to find paid work to be able to afford to get through the course as I only had a basic student loan to live on, so I signed up with a nursing agency and was able to work as a care assistant. It meant taking work and short notice and always being in an unfamiliar environment, I got to know most of the hospitals in Leeds!  I completed the third year to get a degree in Professional Studies with Playwork.  The areas of work I was interested in, play therapy and similar were not open to me though and I needed to gain further qualification.  Most play therapists were qualified in social work, but I couldn't do that as I did not have enough practical experience!  Some of the people on the course went on to do teacher training, but I found an interesting course an M.Med.Sci in Primary and Community care, back in my home town of Sheffield.

Amazingly I got a place on the course, most of the other people on the course were Drs, Physios and OT's, rather out of my league.  Having already done a degree I had to pay my own fees and living expenses so needed to work.  The course was a full time course, but lectures were only on 3 days and many of the others had day release from well paid jobs, only 3 of us on the course were doing the full time one year option, the others were doing a part time two year option, but I needed to get into a proper job.  Again I had to find part time temporary work so carried on with the nursing agency and also got a job in a nursing home and the local pub, just to survive.  At times I was working 40+ hours in 3 different jobs and studying full time.  Not surprisingly my health began to suffer!  I had a kidney stone just before the course started and was in hospital.  I took just a week off work as I was working to get money to see me through the course and there was no sick pay on any of the jobs.  As time went on I was not really able to cut down my hours and was often working nights and days, but needs must!  Eventually I became too ill to work so had no income, then my studying began to suffer too and my tutors started to complain and asked me to give up the course.  No chance I was not doing that again, so I agreed to go part time.  I now had no money and could not claim benefits because I was classed as a student, I could only get benefits if I gave up the course, no chance.  I then had to take time out from the course altogether, but in order to finish was still registered as a student.  Eventually after 3 years I finally got my degree, but because I had failed one of the modules and had to redo it I only got a basic pass rather than a grade as they did not grade anything that had to be redone, but you had to redo to complete the course, seems rather unfair to me.  The one I failed was statistics, hardly my strong point.

By this time I had moved to Leeds with Rob who had got a job in Leeds and I needed a job.  I was able to get by for a bit working for the nursing agency, but it was not stable enough.  I finally got a job as a part time job Home care co ordinator, I was still far from well and still writing my M.Med.Sci dissertation on Barriers to Individualised Care in Nursing Homes.  The dissertation had to be related to your work, which was fine for the Drs, Physios etc and they had access to patients and data.  I had to ask the nursing home manager where I worked at the time if there was anything I could research for them, but I wasn't allowed to use patients and could only interview carers so it was not a great piece of research, but it was the end of 3 years struggle or so I thought.

Two days into the care co-ordinator job I fell ill and had to have 2 weeks off, not a good start!  I finally got back and got into the job, but then began to have issues with getting paid, there was a lot of travelling and I was using my own car, which I had basically had to buy to be able to do the job!  After a few months the stress got too much and I had to leave and I never got much of the money owed to me and was not able to fight for it, due to ill health and no money.  I fell back on the nursing agency again, but my health was getting worse and I was not able to work much at all.  Again I was not able to claim benefits as I had not paid enough national insurance only having worked part time in any job for many years.  Finally in 2000 I became too ill to work and I haven't worked since.

During my life I also gained experience through work experience and work placements in nurseries, youth clubs, libraries, and respite care settings.

Rob had a full time job and we had to survive on that.

After finishing work I was in a very lonely depressing place and started to write articles for an ME website and became editor of the Leeds ME group newsletter.  By this time I was into my 30's and had married and really wanted to become a Mum. But guess what I couldn't do that either!  After years of trying we were referred for investigations, but nothing was obviously wrong so we were referred for IVF.  I wasn't very good at that either, I managed one pregnancy out of 3 attempts.  We had to give up then as money, time and energy were getting difficult and I had to focus on Emily.

So here I was a Mum to one, and I even needed help with that!  I was not able to look after Emily on my own full time, what a failure. I can't call myself a full time Mum or even a housewife and don't do all my own housework.  I'm not a full time Mum now as Emily is at school.  I would still love more children, but I am too old and can't expect people to help me out.  I didn't know how I would manage when I had Emily so we took a chance.  The fact that I did get help was because Rob got cancer whilst I was pregnant so couldn't help me and that's still really the basis I get help on as he works full time and has his own health issues.  Anyway it will never happen as I am too old for IVF and can't have child naturally as Rob is infertile due to his cancer treatment.

When Emily started school people wanted to know what I was going to do.  She has now been at school 3 years and I am still not well enough to work, it takes all my energy to get her too and from school and make sure she is looked after when she needs it.  Even if I could work what would I do?  With a job history like mine who would give me a job?  All my qualifications are out of date and irrelevant and I never know if I will be able to commit to anything.  I have tried helping out with some children's activities and last year helped with a hour of spellings in school, its rewarding, but meant I was too exhausted after to be Mum to Emily.  I don't have help with Emily now so have to be up to what she needs.

Before I had Emily I made cards and started my own website to sell a few, I never made any money on it as I could not do that many, but at least I was doing something and filling some time.  I have not been able to get back into that as I don't have the time and energy even with Emily at school and so many people are now making and selling and the standard is way too high for me.  I still have all my stuff, but don't even manage to make for my own use much of the time and get really upset with all the stuff I have going to waste, but can't get rid of it either as that too would feel like a waste.

I like making things, but struggle with concentration and following instructions.  I began quilt making a few years ago to give me something to work on and enjoy, but its hard work and I only ever manage to get any done at the class.  The quilt I am working on now will have taken me 2 years to make once it gets finished, some people would have made it in a week or 2!  Its nice to make things, but I do make many mistakes and can only do it when I am able to concentrate.  I have many things of the go where I have got to a tricky bit and now need help so have had to stop.  I also started making bracelets and simple jewellery, but once you have made people a few they don't want any more and I can't produce enough to sell or meet the ever increasing standard, so again the stuff just sits there and the more complicated stuff I want to try never gets done.

So I can't work, I can't make things, I am not a full time Mum or housewife, so what am I then.  On forms I have to put long term sick, what a job being sick!!

Earlier in the year I decided to start a blog and redo my website, but guess what I got stuck.  I can just about manage the blog, but the website needs knowledge I don't have so is not completed how I wanted it.  I need help with it, but Rob does not have the time and once Emily is finally settled in bed I am too tired to start working on it.  So yet another failure, disappointment.

So am I retired?  Well the definition of retired is "having left one's job and ceased to work," so yes in that literal sense I have been retired for 14 years.  A retired what though?  Never heard of a retired failure, or a retired never got anywhere.

At 43 I am about 20 years off retirement age, but the chances are I will never work.  Even if I recovered tomorrow no one would give me a job and I would need to train for anything despite the things I have done in the past as its all obsolete.  It's not much of an example to Emily and she does sometimes say she is not going to work when she is grown up, either that or she is going to have a job that earns her lots of money, but requires little effort!

A few weeks ago I was asked why we don't move to a bigger house or a house with potential?  Why? Because we can't afford to.  The reply well Rob has a good job.  Well yes he does, but he has the only job, the only income and having a disabled wife is not cheap.  We don't get any benefits, don't even get child benefit, well actually we do, I get paid the benefit and then it gets taken off Rob, but I have to declare it as an income!!  We don't have the security to commit to big expenses.  Rob has a good job and a decent paid job, but this year is the first year he got a pay rise of 1% after several years of no pay rise and the cost of living has gone up a lot in that time.  There is little chance for progression in the job now as that would mean more hours and probably a move to London, not some thing we could do.  The other week many of the people higher up the chain were made redundant, not exactly something to aim for then.  No job is safe and after seeing my parents and grandparents struggle after being made redundant its not something I want to go through again, redundancy does not always come with a lump sum pay out and a good chance of another job.  We have no fall back if Rob lost his job, I do not have any income or the chance of walking into a job either.  So no thanks we will stay where we are with what we can afford, sorry if we don't meet your standards and expectations.

It does make me feel bad though, like I am dragging my family down with my inability and stopping them doing the things that they could do without me.  Foreign holidays are just a dream.  Emily was teased the other day because she has never been on a plane!  When I was a kid most of us had never been on a plane, it was only affordable to a few, now you are a laughing stock if you haven't been abroad or stayed in this country for a holiday.  I would love a bit of sun and scenery, but the toll on mine and Rob's health, not to mention the expense makes it impossible for us.

Many people who have had cancer decide that they are going to live life to the full and go off on holidays and do whatever they fancy and stuff the expense.  My husband does not have that luxury.  everything he does and works for is for me and Emily to be able to have what we need.  I am not very good at realising that sometimes and am quick to pick him up on the things he doesn't do, but if it weren't for him I would have nothing at all.

So I do have a lot to be grateful for, I am alive, I am living in a comfortable home with enough food to eat.  I have a beautiful daughter and a loving husband.  So why is that not enough?  Because I don't have a job, an identity, so I am just an ill person, but with an illness that is not really accepted and recognised, so I just become a nobody or a lazy person.

Maybe my job title should be professional nonentity, or professional moaner.

Rant over I think, but watch out if that man knocks at my door again.  he actually wanted me to sign up to a first aid course, actually something I would love to do, but again wouldn't be able to manage.