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 http://www.frommetoyouwithlove.co.uk 

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 crumpets, GF custard creams, Ham Crispbake and GF Crispbread and for my lactose intolerance Soya Yogurt, Lactose free cheese, Soya 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.

Worry!

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.