Saturday, November 29, 2014

Wake me up in January

I am well and truly ready for hibernation now!  Had a hectic week and then yesterday Emily came down with a throat bug and was off school and we got a gas leak, so there were people in and out of the house all day and no chance to rest.  I had no sleep last night and Emily spent half the night in bed with me so my pain today has been unbearable.  The only thing was that we have not done much today as Emily not well, but I still feel like I have run a marathon.

We are hoping to get to see Paddington tomorrow at the cinema, so that won't be too taxing, although I do struggle with the going out and the noise, but it will keep Emily occupied for a couple of hours.

Our tower of London poppy arrived, much quicker than we expected

Timje for a cuppa and bed, wake me up in January or better still March!

Wednesday, November 26, 2014

Dear Pain

You got to laugh

Having been a wake most of the night and in awful pain and coughing my head off, I have got my silly head on, well you have to laugh or you would cry.

Just created this poster

Having read a few books recently based on letters I think I am going to write some letters to issues like pain and sleep, so watch this space!

This certainly appealed to me today :-)

Tuesday, November 25, 2014

I will keep smiling

It getting hard to keep positive at the moment as I feel rubbish, got awful tinnitus and in a lot of pain, not to mention feeling sick and dizzy and cold and shivery, but think I have got a urine infection so that would explain some of it I guess, my lymph nodes are swollen so I am fighting something.

But I will keep positive.  I have set up a private facebook group for the people I was at 5 ways with and everyone has joined in and we are planning a meet up, just hope I will be able to go, I like the ideas but then can't make it.

Everyone around seems to be really fed up, I am not sure that Christmas does anyone any favours.  Even the kids get worn out and stressed by everything going on and Emily hates the thought of Santa coming and gets upset on Christmas eve.

I saw this in the book I am reading Mongol by Uuganaa Ramsey.

I have also read this article today great for stressed parents.

And finally 

Keep smiling


So much pain today and my concentration is rubbish, just wanted to share this pattern that made me smile :-)

Found out yesterday that the quilt class I go to is moving nearer to me and easier to access :-)

Keep smiling :-)

Monday, November 24, 2014

Keep Smiling

I made it to 5 ways :-)  We all had a good chat and laugh, maybe I should have joined in the exercise bit, but it was fun and not too demanding, but I knew about it afterwards!

It was also a bit sad as it was the last session.  There is a group next week, but its a party with the pre school children.  I would love to go, but know it will be too much for me and its going to get busy as we get nearer to Christmas so I have to protect myself a bit.

I was paid a compliment and accepted it in the spirit that it was meant.  Was told I looked good, normally I would think, no I don't I feel rubbish.  Today I accepted it and thought well I have had my hair coloured and cut and I was smiling and joining in, so yes that's good.  I know last week people commented on me not smiling enough and it does make you feel better and the people around you too.

I am hoping that I will be able to keep in touch with people from the group, it feels like we had just found our feet and relaxed with each other when it was time to say goodbye, which is sad, but as they say all good thing come to an end.

I have missed a few of the sessions, which I am sad about, but I did miss the activity one so that was probably for the best!!

I am going to keep up with finding positives in each day.  I got to the group and we had to share what had happened in last week.  I said I had found positives in 5 out of 7 days.  Normally I would feel bad about the 2 I missed, but thought hey that's not bad at all.

I have just seen this on facebook

I really need to look into the mindfulness stuff a bit more as I think it is a good philosophy.

Earlier on I was getting upset about not having done things I wanted/needed to do because of not feeling well enough, but I did read some good books and they have made me think about things a bit differently and also sparked some ideas that I can use on my blog, so watch this space.

The books were Letters to my Wife and Letters to my Friends which are fictional, but thought provoking.  I have also read quite a bit of From ME to you which is a series of letters written by ME sufferers.  I have just finished Against all Odds a true story of a boy who was brought up in care and subject to abuse, but managed to turn his life around as an adult. There is a follow up called Beating the Odds which I want to read.

I can now share the birthday card I made for my sister in law

Pattern from Stitching Cards.  It is stitched on white card with a silver body and black ears and feet.  The eyes and nose are little buttons made by Trimits.  I enjoyed doing this one and it was quick and easy.  I have been doing more complicated ones and not being able to finish them.  They don't need to be elaborate and I think this puppy is really cute.  The next one I want to do is more complicated for 40th birthday, fingers crossed I get it done in time, won't get it finished with fingers crossed though!

My positives for the weekend were;

Watching the lights switch on and fireworks in Rothwell.  

Having a meal out at Salute.  They have gluten free pasta and pizza.  I wanted the gluten free gnocchi, but they had run out.  There are other gluten free options, but many of them are fish so I can't have those either. I had pasta stroganoff which was very tasty, but I had to be careful as it wasn't dairy free, wish eating out wasn't so complicated, but it was nice to eat out for a change.

Getting new oven, which is now cooking our tea.

Emily being good on Sunday evening and helpful too. 

Getting to the Christmas Fair at Rivers Meet and chatting with the people we know there.

Keep smiling 

"One day at a time, this is enough. Don't look back and grieve over the past for it is gone. Do not be troubled about the future, for it has yet to come. Live in the present and make it so beautiful that it will be worth remembering."

"One day at a time, this is enough. Don't look back and grieve over the past for it is gone. Do not be troubled about the future, for it has yet to come. Live in the present and make it so beautiful that it will be worth remembering

Sunday, November 23, 2014

Christmas Sprit

Yesterday was the annual Christmas fair and light switch on in Rothwell, its a great day and well attended.

Emily had a brilliant face painting done by Artifaces and went on some of the fairground rides.

Later on we went back for the lights switch on and fireworks.  Well done Rothwell Carnival Committee.  Thankfully it stayed dry and not too cold.

We managed not to buy too much, a star decoration for Emily which we had ordered at another event from Lexi's Little Gems

A bun from Cakes for Breaks and a pork pie (no pictures of these, wonder why!) and a Christmas Cake.  The indoor stalls are difficult to access if you are disabled, we managed to get in the back door when we arrived, but a bit later it was closed and there was no disabled access, there is access at the side of the building, but that was also closed and the only way in is up a flight of steps.  When we tried to go back in we couldn't get in so I had to sit in the car.  It is also a very busy event and getting near the stalls is difficult, which is a shame especially as there was an FDM (for Disability Mobility) stand inside! Outside stalls were easier to access, but they were lucky it was good weather.

Wednesday, November 19, 2014

What can I do?

I am so fed up of everything I do having consequences and affecting me so much.  I know I am always doing too much and doing things that are not good for me, but if I cut out all the bad things what would be left.  Life goes on and you can either go with it as best you can and make the most of it or give up.  I can't give up with a 7 year old to care for and a house to keep in order.  If I did the bare minimum I would probably feel ok and be able to cope, but that would mean never going out, not being able to do things with my daughter, not having anyone in the house and so on.

I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day.  Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up!  I go to bed early, but then get fed up of being in bed because I can't sleep and then need to get up because I am in pain or my mind is driving me mad.  I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too.  I was in bed at the same time as Emily, but then only got about 4 hours sleep.  I can't sit down for long as its uncomfortable, but I can't move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn't want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs!  If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much.  I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can't sleep and so it goes on.

What should I do with myself.  I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy.  Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them.  My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.

But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can't take part or can't follow conversation.  Then wonder why I bother and come across as being ignorant and or stupid.

I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.

I know that I need to do much less, but things just pile up, I don't work, I don't do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me.  I have just had a letter from the council saying I need a review of the money that pays for my care and help.  I need that money to exist, but the effort of justifying it is so hard.  Last time they took quite a bit of it away from me, I expect they will do the same again.  I know the government need to make cuts and that we can't expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it.  I don't have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can't afford to pay for it myself.  There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.

I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that's not fair to him.  I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn't care for himself let alone me.  I still get them as I have a child to care for and a husband with health issues, not because I am ill myself.  Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won't find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap!  I can't even walk to the bus stop or even to the end of the street!  It's sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.

My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway.  My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more.  It's such a pain always being different though when all you want to do is blend in and be normal.  My daughter has been picked on because I am disabled, how cruel is that?!  The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can't hear her or can't cope with the noise and energy that she has.  I try to make sure her life is as normal as possible, but it's always going to be a bit different.  She will always stand out as I need to park in the school car park as I can't walk from the street parking an issue which continues to cause problems even though she has been there for 3 years.  Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.

I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can't do anything with.  I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don't put much effort into getting ready.  I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box.  I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can't do that alongside watching Tv  or having a conversation.  I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done?  Nothing.  I have enjoyed doing it, but its not what I wanted it to be.  I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more.  I really have to try and rest tomorrow as it is this months class on Friday.  Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight.  But I want to do things, its so frustrating.

I like cooking and baking, but can't manage the preparation or standing over anything, can't follow a recipe.  Occasionally make packet mix buns with Emily, but only if she mixes it.  I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it.  My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can't ring up about it and Rob hasn't had time and can't get someone else to do it as they need to be able to explain the problem.  Add in my food intolerances and food gets very boring.  I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable.  I mean what can you have that's gluten free, dairy free, sugar free, fish free and easy to prepare?!  Availability is getting better, but its makes shopping and cooking quite a chore.  I can't go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco's website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses.  If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can't come out mid shop.

This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much.  I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can't just ignore things or wait for a better time as the better time never comes.

My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.

I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.

My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone.  But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.


Today I am very grateful to Maggy who doesn't know me that well and is going through a lot of issues herself for her kind words and offers of help.  Thank you Maggy you are so kind and thoughtful.  Meet Maggy in a previous blog.  Maggy is making many items for me to give as Christmas presents, it is making shopping much easier this year, I can't wait to see them, I might not be able to give them all away!

At 5 ways one of the other people mentioned some apps  that she found useful for her phone, unfortunately they are only for iphones.  The apps are Happijar and My wonderful days.  These are apps that enable you to document things and see the positives and track mood changes.  I haven't got an iphone, but think I have found some similar ones Day journalAttitudes of Gratitude and Happy Moments which I have added to my phone, just hope that they don't become a chore and just another thing to do.

There is also one called Happy Family, which sounds a good app, but appears not to work properly so I avoided that one will try the others first.

Well off to rest now, rather dizzy and yucky from having hair coloured and a difficult evening with Emily, but at least I look a bit more human now.

Tuesday, November 18, 2014

Down again!

Feeling rather down again today, had a busy day yesterday. Does anyone else feel that everything is their fault and that people have a low opinion of you even though you try your hardest, its never good enough? I went out to the car this morning and found it unlocked, started telling myself how stupid I was and how it was all my fault and I should be more careful etc, etc, then I thought hang on a minute it wasn't me who took the car out last and I had just assumed it would be my fault. I know if I mention it to Rob he will blame someone else or just laugh. My oven stopped working last night, blew the fuse and now won't work at all. For ages the light hasn't worked and Rob broke the casing trying to change bulb, so we just left it, but I decided I wanted a new unit so the light would work, so Rob took out the old one to check which we needed. So next time we use the oven it blows the fuse, so I am blaming myself for wanting the light repaired, which is now on order and will probably be a waste of money and cost me a new oven instead. I was brought up being told a lot of things were my fault and now I just blame myself or take the blame for anything and everything, but I feel so useless. I am playing the victim? Guess I am, but can't help how I feel. I went to the well being group yesterday, its supposed to make me feel better, but I come away thinking I shouldn't be there as everyone else has worse things to deal with than me and I keep quiet about my own issues as they don't seem important.

I do get some things from going to the group, but the exertion of it is difficult and then I had unexpected demands on my time and energy last night making it more difficult. I tend to take other peoples issues on board and want to sort them all out, but don't think my issues are important. Being with a group of people with all manner of issues also sparks issues of my own and then because I am worn out today and can't do much to take my mind off things I dwell on them.  Sitting here is not good use of my time and energy, something else to beat myself up about, especially as I am having my hair coloured later which always makes me feel ill and Emily is having a friend for tea at the same time, not good timing, but can't let Emily and her friend down because I choose to do something for myself that I really shouldn't be doing.  I know I will feel even worse tomorrow and will just want to curl up in bed, no chance of that though as Rob in London, its cleaning day (for the cleaner not me!) and then Rob out in the evening, life carries on no matter how I feel.  I am struggling to type getting all the letters mixed up so I do hope that some of this makes sense.

At 5 ways yesterday we again talked about seeing positives and making small steps towards goals. Everyone else seems to do so well and makes progress, whilst I feel stuck.  I really need to get back into the seeing positives, it was useful.  I read Gratitude in short supply a column written in Psychology Today by Toni Bernhard an ME sufferer who writes about her experiences and has written books too.  Also read What is wrong with me another of her articles and they are very good and I can relate to them, just need to put into practice.

Its difficult to have a positive as there always seems to be a but.  I went to 5 ways yesterday, but it was difficult and I am suffering for it today.  I was able to take Emily to Gymnastics, but I shouldn't have done, but had no choice she couldn't have gone otherwise and I can't let her down because I did something for myself.  I got some things discussed with Rob, but it meant I was later going to bed and then didn't sleep.  What looks like a positive always has a consequence for me, its tough, but I know I should be grateful that I can do some things even if they do have consequences.  If I always thought about the consequences I wouldn't do anything, but I know how things affect me and choose to suffer the consequences.  Is that right?  Is it the best thing for me and my family?

I want to get out of this horrid depressed rut, it doesn't help me or my family, but what can I do, like everything else I feel awful, but there is nothing much than can be done, apart from me pulling myself together and getting on with things regardless.

I was wondering last night why I write this blog.  Yes its an outlet, but many things go unsaid as I don't know who reads it.  I am not normally a public person, so why write something that can be read by anyone who has the internet?  I feel that people don't listen to me, is this a way of just sounding off to anyone who cares to read?  I don't get feedback so have no idea what people think.  Did I hope that people were going to come along and make things better for me?  I wanted people to understand better, but I doubt that happens and why should people need to understand it doesn't affect them so they don't need to think about it or worry about it.  If I find it useful that should be all that matters, but again is it the best use of my energy?  If I don't type or write the issues bubble round in my head, if I type or write I get more tired and dizzier and feel generally rubbish so is it helping?

As ever I feel I am neglecting my craft stuff.  I have stitched a card which I need to finish off and I have another to start and really want to get the dolls knitted for Emily for Christmas, but don't get me started on Christmas, it should be banned for people with ME, to much to do, too many expectations, totally fed up with it and more than a month to go.

I need to have a few priorities instead of a huge list of things I want to do and realise that I can't manage lots of things and when I  have a busy day accept that I will feel bad and not try to do much the following day, but it never happens like that and I keep trying to carry on and set myself up for a fall.  How can I expect people to recognise my limitations if I don't accept them myself.  Why is it wrong to rest when I need to, why do I feel I have to prove something.  I am ill, tired, weak, dizzy, but the pressure piles on every day, will I ever accept that?  Of course what is a busy day for me is a fraction of what other people do, so even a busy day feels like a failure.  Oh dear another moan, but maybe I can get a bit of rest now.

Friday, November 14, 2014

Craft Ideas

Not that I need any ideas I have more than enough unfinished projects, but I have been collecting things in my emails box, maybe the ideas might be of use to others so I will share them.

Christmas printables free from Craftville, this one and many more

Beading patterns and kits from Julia Curtis

Fusion bands from Around the bead table

Also from Around the Bead table Bow tie bracelet free pattern

and another free one for a Easy Crystal bracelet

Taking my achy body for a rest now, it's so cold and wet, was glad of the heated seat in the car today, think it will get quite a lot of use :-)

Thursday, November 13, 2014

Reality dawns!

I am constantly trying to work out how to have the time and energy for things, in reality I have very little time and energy and use them on things that need to be done to keep every day life ticking over and getting essential rest, so there is very little left for doing the things I would like to do, but complaining about it won't help.  Thursday morning is the time I have the most 'spare' time as I have no commitments and no one coming in to wash my hair or clean and no appointments, but that still only leaves me with 3 hours from dropping Emily at school until I need to be in bed to be able to get up to go and collect her.  I have been getting annoyed with myself for not having the time and space to do bits of craft so used some of this morning clearing the spaces which were just been used as dumping grounds for other stuff, I now have 2 small work spaces, one upstairs and one downstairs, just wonder how long they will stay like that?!

Yesterday I was talking to Emily about helping out at school, I did spellings for an hour a week part of last year, but found it very demanding.  I wanted to help out with the creative time that they have, but realised that I wouldn't be able to do it, me and my ideas!!  then I said what about having an occasional craft group at home with a few friends, another daft idea I struggle when she has one friend to play or just getting her to follow instructions, let alone more of them!  Oh dear, now just need to hope Emily forgets about it or I will have some awkward explaining to do.

Yesterday I read Tickle ME a short collection of anecdotes about a girl with ME and the things she does in her brainfog moments.  Brainfog is a major symptom of ME and can be rather awkward at times and you do learn to laugh at yourself, well its either that or cry!  It is amusing, but also something I could relate to and I am sure all ME sufferers could write similar.  Then I started to read From ME to You, With Love a collection of letters written by people with ME explaining how the illness affects them, there is also a website 

To be honest its rather depressing, many of the sufferers are in a worse situation than ME, but there are plenty the same or better, the condition varies so much.  This book is being sold to raise awareness and to raise funds for research.  I began to wonder though who would actually want to read it, I had to stop as it was unsettling me, when I was already pretty down.  The idea is to get non sufferers to read and understand the condition, but why would they want to unless the condition of someone close to them has an affect on them.  Many people think they understand or know as much as they need to, although it may not be the reality.  If you have an interest in illness and disease or personal stories then yes you might have a look, but are probably more likely to read about a celebrity with cancer or dementia or the like, its much more interesting.  it also makes me wonder just how interesting my blog is, rambling on about the things I am not able to do and my symptoms.

I started the blog to showcase craft projects and to write about things of interest to others, but fear that often it is just a big moan.  I never expected lots of people to read and know its not of interest to many people, but I don't want to bore people or give an even worse impression of people with ME.  I also wanted it to be a personal record of information and achievements and hope to be able to focus on this more.

I did find noting the positives in each day beneficial, but somehow lost my way.  Perhaps I should make note of today's.  Firstly getting the spaces cleared of junk, getting 2 cards pricked ready to stitch and my gluten free food all came in the shopping, its often not available so I end up with no food!  Today I got GF Pasta, GF pitta GF Wrap, GF crumpetsGF custard creamsHam Crispbake and GF Crispbread and for my lactose intolerance Soya YogurtLactose free cheeseSoya Milk and Goat's butter.  I always order more than I need as its never all available, will have to freeze some this time, but at least I have plenty of goodies.  Not had the Ham crispbake or lactose free cheese before so looking forward to those.  It is good that supermarkets are getting better at stocking products for food intolerances and allergies and that the prices are starting to come down.

Finally I managed to change my Physio appointment from Monday to tomorrow morning hoping to get on top of my pain and stiffness a bit, its got worse since it turned colder.  Having that appointment also means I don't have to rush from Physio to 5 ways on Monday morning so gives me more chance of actually getting to 5 ways, I have missed it.

Wednesday, November 12, 2014

Snow Therapy

I haven't been able to rest properly due to pain, anxiety and palpitations today and although I am exhausted it makes me restless, but not able to do much.

Looking for something easy going I ended up looking at Frozen fabric.  Anyone who has a little girl will know that Frozen is THE thing this year.  We have just booked tickets for Disney on Ice in Leeds in May 2015, with a Frozen theme, even though it's 6 months away it's nearly sold out and we struggled to find 3 seats together.  Its not cheap and certainly not something you see every year.  We have been before to Sheffield, once for Rob's grandma's 80th birthday, 11 years ago and again a few years ago to take Emily for a Christmas treat.

Disney on Ice 2010

Disney on Ice 2003

Sad to realise that Friday would have been Rob's Grandma's 91st birthday and it's only a year since we celebrated her 90th with her, but she sadly passed away in July.  To many anniversaries this week, with my Grandma's birthday at the weekend which would have been her 99th!  If you read my previous post you will also know I spent yesterday at garden of remembrance to put my Mama's (other grandma's) ashes with her husband on their 75th wedding anniversary. There is currently a rainbow outside a theme we had at the funerals.  Emily and I love rainbows, although she tells me there is not pot of gold as you never find the end of the rainbow, partly thanks to her Dad for shattering her illusions by telling her the truth about rainbows, the fantasy is much better!

Anyway back to what I was saying I found lots of Frozen themed fabric.

If only time energy and money were no object.

Quick update post

Had a very busy and emotional day yesterday so really feeling it today.  We put my Mama's (grandma's) ashes in her final resting place with my Papa (grandad) on what would have been their 75th wedding anniversary.  Sad and emotional for us all, but they are together now and will be happy.  My Uncle read

Death is nothing at all. 
I have only slipped away to the next room. 
I am I and you are you. 
Whatever we were to each other, 
That, we still are. 

Call me by my old familiar name. 
Speak to me in the easy way 
which you always used. 
Put no difference into your tone. 
Wear no forced air of solemnity or sorrow. 

Laugh as we always laughed 
at the little jokes we enjoyed together. 
Play, smile, think of me. Pray for me. 
Let my name be ever the household word 
that it always was. 
Let it be spoken without effect. 
Without the trace of a shadow on it. 

Life means all that it ever meant. 
It is the same that it ever was. 
There is absolute unbroken continuity. 
Why should I be out of mind 
because I am out of sight? 

I am but waiting for you. 
For an interval. 
Somewhere. Very near. 
Just around the corner. 

All is well. 

This must be particularly difficult for him as his own son died aged 37 three years ago.  Thank you for the reading Uncle Peter and for your strength, I know it can't be easy.  We take comfort in the fact that Mama, Papa and Simon are now all together.  None of us really knows what happens after death, but I think we have to believe it is a happier place and our loved one are at peace and together.

I was able to give my Auntie and Uncle a button picture that I had made for them

I also gave them and my parents Emily's latest school photo, which they all liked and had a good laugh at, it is a typical Emily picture!

We bought some yellow rose trees to plant in my Mama's memory, the one in my garden is flowering again 

I have bought a couple of books for my Kindle this week about ME/CFS

From ME to you with Love
"This collection of brave, honest, moving and inspirational letters are the voices of those who hold on to hope every single day that an effective treatment or cure will be found; sufferers of all ages and severities who are determined to be taken seriously by the world and make the very best of their restricted lives. All too often, their hardest fight is against the attitudes of so many who think that this neurological illness is 'just over-tiredness' or 'all in the mind'. These letters voice their wishes for better understanding and treatment of ME to friends, family, the professionals involved in their care and the general public. The profits from the sale of this book will go to Invest in ME, a UK charity raising awareness of ME and funds for biomedical research. Find 'From ME to You, With Love' on Facebook" 

Tickle ME
"At 23 I was diagnosed with Myalgic Encephalomyelitis. I went from being a busy, social and active young lady to bedbound. Three years into this illness i have learnt a lot, and the one thing that keeps me going is staying positive. 

I am sure any of you who have this condition can relate to brain fog moments... I think if we didn't laugh we would have to cry! I have chosen to laugh, and I want to share with you all of my funniest brain fog moments. 

After all, laughter is the best medicine! 

25% of all royalties from this publication will be donated to Invest In ME, an Independent charity campaigning for bio-medical research into the illness. 

I hope this book warms you inside, and I think it's pretty much guaranteed you will be able to relate to it!" 

Also the print version of 

Can I tell you about ME/ Chronic Fatigue
"Meet Mollie - a woman with an illness called ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome), and her family, Mike, Ellie and Eric. Mollie and her family help readers to understand what ME/CFS is, what it is like to have it and how it can affect their family life. Mollie can't always do things that other mums do because of her illness, which can sometimes be frustrating, but they share strategies that help them all to cope. The family also explain how ME/CFS can affect different people in different ways. This illustrated book is an ideal introduction to this often misunderstood condition. It shows family, friends and anyone who knows someone with the condition how they can support someone with ME/CFS, and their family."

These have been added to my ever growing pile of things to read and inwardly digest.  From ME to you and Can I tell you are meant to be read by family and friends to improve understanding, but its difficult to get people interested, they either think they know what they need to know or are not interested in finding out more, but hopefully reading them myself might give me some coping strategies.

Along with these have have printed out a piece about gratitude from Psychology Today to try and get me back on the thinking positive road and Strong Willed Children a positive article on having strong willed children.  Its going to take me a long time to get through them all.

I really have to give in now and get some rest I am so tired and in pain, dizzy and brain fogged.  I pushed myself too much yesterday so I am paying the price today, but sometimes it has to be done.