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.
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