Take care of the pennies.....

And the pounds will take care of themselves.  There is some truth in this as we seem to fritter away fairly small amounts of money without realising how much they add up and then when we need something more substantial we can't afford it, yet we have loads of small useless possessions and no idea why we bought them.

This is a part written post, but as it has been in the writing for several weeks I am going to publish now as it will be several weeks before I can finish it!!

We are currently having building work done so there are some big expenses to cover and stress about affording it and what will happen when my DLA changes and I lose my Motabilty car.  DLA is an allowance given to disabled people to cover extra costs of being disabled, it is not means tested and someone who is able to work full time in a well paid job can also claim it.  In my case it pays for my Motability car and a cleaner, both of which are essential for me to manage as best I can.  Given the changes that are coming and the fact that PIP is different and I will lose some or all of the payment along with the continuing every day costs which seem to increase all the time, it's time to look at where we can cut back in order to save money and be able to cover the additional expenses ourselves.

As always seems to happen when you have big expenses that things start to go wrong or break down. We had to get damage to the car repaired, none of which was our fault, the dishwasher is not working properly and freezer a bit dodgy and my mobile phone doesn't work properly.  Why do we need these things though?  The car well I am afraid I do depend on that, even though I don't go out a lot I do have to take my daughter to school each day and we need it for getting out and about and visiting relatives, but I am sure with a bit of effort we could use it less, especially in better weather, but I can't walk far at all so not using car means using wheelchair or scooter.  These are also things I have and should be grateful for, there are many who can't afford them so are more limited than me.  The dishwasher another luxury for sure, but without it who will wash up, it would take me all day, or maybe we should all have one cup, plate, bowl etc and wash it after use, less pots needed less space needed, no dishwasher needed.  I wonder if it would be cheaper to use paper plates and throw everything away after use, saves space and washing up, but not good for the environment or the bin men!!  Why do I need a mobile phone?  I don't ring anyone, all I use it for is texting and playing games.  The games are a waste of time, but the texting is a lifeline as I don't use the ordinary phone due to hearing loss.  I have a reasonable package on it, but is it vital?  We recently bought Emily a very cheap mobile phone and text package so that she can text me in the house rather than shouting or expecting me to run around and find her.  It worked for a few days, but now she forgets to keep phone with her, but we will have to work on it when her room is another floor up or train her to do the running about rather than expecting me to, but 8 year olds are very stroppy and demanding at the best of times and hate being told what to do.

It seems that over time what we are able to do and afford has decreased quite a lot, it difficult to know if this is due to increased cost of living, change in priorities, the consequences and expenses related to being ill, our income having gone down in real terms due to pay freezes.

Money saving ideas

Some of these may seem daft, but every bit helps and once things become a habit or part of routine then it won't seem such a hardship.

It's very easy to feel you need something or an item runs out and you need to replace it even though there are plenty of other things that can be used instead.  Using up what there is instead can actually be more creative and also frees up space.  Things that this applies to are craft items, food, toys, books, toiletries.  It's so easy to be tempted by things and add them to the stash you already have instead of using things up.  I have big collections of craft items, books, and toiletries and it becomes problematic to store them and they require energy to use or do something with them and they mainly stay in a cupboard.  One of the reasons we are having building work done is because we are short of space.  It may have been better (and cheaper) to get rid of stuff, we are also paying for some stuff to be in storage whilst work is done and then have to sort and re-home it when we get it back and due to delays with work starting we have to pay for longer than we wanted to.  If we had been more organised we could have sorted things out and possibly saved some money.  The problem with having ME is it limits what you can do and often ends up being costly in some way or other.

We have become such a materialistic culture and always want what other people have and feel we are missing out if we don't have the 'right' things or engage in the 'right' activities or drive a certain type of car.  We spend all our lives complaining about what we don't have and not appreciating the things we do have and also the things that money can't buy.  I am currently supposed to  be doing a mindfulness course, whoops I paid for that too!!  I am sure I could probably have found all the information for free, but somehow signing up for a course makes it feel that it will be more effective.  In my case it makes me feel guilty as I might not be able to complete the course, which is only reading and making notes, but is another demand on my time and energy and so much of it is common sense. I paid £19 for the course, but then had to print out a lot of notes so another cost.  I got the course on an offer, the full price was over £200, I have no idea why anyone would pay that much as you do it all yourself.  But of course because the full price was advertised it feels like a really good deal to get it for £19, when in fact it probably never sells at £200+, we are all suckers for a so called bargain or good deal.  I also feel under pressure to do the work as I have paid for it and expect to see results, but actually the pressure and guilt negates any benefits.  It is the same with craft items and books etc, they are bought with delight and great intentions, but then become a burden or left unused.  Often when I go online I fill my virtual basket with things I want/like/need, but then at the end feel I can't justify the cost so empty it again, that is one bonus of online shopping, I can't imagine going round a real shop and then deciding to put everything back, but then it is a waste of time!

Why is it when you do decide to do an activity craft, or cooking or similar that there is one item you don't have and you feel you really need to have it.  Shopping with ME is not an easy activity so most of my craft items are bought online so the one missing item becomes several items as there is a minimum spend or high postage costs unless you spend enough for free postage and then there is all the wasted time looking for the most reasonable way of buying and then when you finally buy it, you discover it is being shipped from China and will take several weeks to arrive when you need it now.  Or as I often do order the wrong size or quantity as I have looked at so many different items and confused myself so end up with the least value for money.  Quantities and sizes are not always clear or sometimes even wrong.

It's also a good idea to make a note of what you buy as when I have looked at so many things I can never remember what I actually bought and where from.  It is easy to think you have bought something but you haven't finished check out or convince yourself when something fails to arrive that you never ordered it and then go and order another.  Of course there is always the option to change what you are doing so you don't need to buy anything.  I have just seen a Gluten free bread recipe that looks great and is supposed to be really nice but it contains Psyllium which is really expensive and difficult to get hold of.  I don't really need to have that bread it just looks and sounds nice and for now I have resisted the temptation to buy and will stick with what I have.  Often when something is needed for a recipe much of it gets wasted as it's not used for anything else and the recipe that sounded nice isn't really or you find it contains something else you don't have or can't eat.

Sort of on the above topic I have decided to unsubscribe to magazines that come packed with ideas that are too difficult or too expensive to make and always contain something you don't have.  The magazines I currently get are Docrafts Creativity and Free From Heaven.  I subscribed to them both for inspiration, but in reality they sit unread, except for flipping through and seeing loads of nice ideas that I don't have the time, energy or ingredients/items to produce.  The Docrafts magazine always has some good cover gifts which is a bonus, but many lay unused.  The recipes are great and we like the sound of so many of them, but as meals are always prepared in a hurry, there isn't time for a recipe or to go and buy ingredients, or the ingredients get bought and then not used due to lack of time or lack of another ingredient or because someone decides they don't like it.  On going to unsubscribe the magazines I found the details for the food magazine and stopped the direct debit, but can't find details for craft magazine, it says I don't have a subscription and it's not in the direct debits, but it could be charged to credit card as Rob started the subscription as a gift, I really do need to keep track of things better.  I should have a confirmation somewhere, but is it an email or a letter, it's not in my email and my paperwork is in chaos due to building work.

I have also unsubscribed to all the offer and sales emails I get, the ones that you automatically get when you buy something from somewhere and they keep tempting you to buy more.  If they can't be deleted I have labelled them as spam.  Not only does this stop me from being tempted into buying things it also saves a lot of time checking emails.

Of course having a new room built means it has to be furnished, we are trying to reuse as much as possible by painting it to match the new decor, we have plenty of things and need to thin out in other rooms, but the basics will have to be bought.  The painting takes time and energy we don't have though and has ground to a halt as it got too awkward when the only space was in the dining room and meant carrying furniture up and down, so I have no idea if the furniture will ever get finished.  That's where my guilt comes in again as I am at home all day, but can't do jobs like that so it has to be squeezed in to the little time that Rob has to spare and with a full time job and many other commitments there is not much time left.

So what do I do all day?  I have no idea sometimes, I feel like I have run a marathon, but yet I have 2 hours of household help each day, Rob cooks and shops.  Well I get up, get dressed, feed me and Emily and assorted pets and get Emily to school then put washing in and tidy up a bit then that's it need a big rest before going round it all again.  I like to make things, but in reality get little time and then when I do it becomes a race against time or a never ending project that just eats money.  I like to give things I have made as gifts, but then I don't feel they are worth anything so buy a gift as well as my time, energy and outlay have no value.  Or I leave it too late to have reasonable time to make an item so end up with an incomplete item and have to buy something.  If it wasn't for all the stuff I have amassed we wouldn't need a new room!  Even though the room isn't for me as it's at the top of the house and I can't manage 2 flights of stairs most of the time.  But here I am saying I have too much of this that and the other, but yet I can't afford things.  Again this comes down to the materialistic world we now live in, it's not that long ago that all the money that people had was spent putting a roof over their heads and food on the table and that was it.  So how come now we can live comfortably, but still not feel we have enough or what we want and need and we are more unhappy and stressed than the people who had nothing.  These days it seems having nothing means you have mobile phones, computers, clothes, housing, holidays even if you don't have a job.

I mainly make cards and gifts, but they take lot of time and energy and there is usually some element that has to be bought.  At the moment I am into making stitched cards and iris folded cards, but every time I want to make a card for someone I need a pattern, I have lots of patterns, but always fancy something different or something that will appeal to that person rather than  using one I have already. Having said that if you don't count my time and effort it still works out cheaper than buying a card.  The iris folding cards need a template, but then are a good way to use up bits of paper and ribbon, so can be quite cheap, although to personalise them I often print off papers to reflect the persons interests, it's easy to forget that there is a cost to printing too.  It takes me a lot of time and effort to make thing even though I enjoy it so it's not something I can make any money out of.  I do sell the occasional item, but never ask much for it as I don't think it is good enough or put a price on my time and effort.  I suppose that is a confidence thing.

There is a lot of pressure on children and parents for the children to do lots of out of school activities.   All the activities cost money and also take time and effort and we all end up so worn out and bad tempered from trying to fit things in and get to activities and juggling who needs to be where and when and life gets so chaotic.  The activities may be enjoyable and good for the kids, but there is a limit.  As an only one Emily likes to go to as many things as possible as she has "no one to play with" at home, apparently Mum and Dad don't count!  The activities eat in to parent child time, playtime and homework time as well as the cost, but we are lead to believe that they are the right thing to do and children should be encouraged to do as much as possible.  I also think that he activities have an impact on behaviour as the children spend so much time being good, following instructions and being quiet that when they are at home they just go wild which makes meal times and bedtimes very difficult.  The activities that Emily does are for fun, but we get so many comments asking how she is doing, if she is doing any competitions or exams etc which all eat even more into money and family time and put the children under a lot of pressure and leave no free play time.  We need to cut back on things both from a spending and a time point of view, but what do you sacrifice, it's difficult to cut things out especially if the child enjoys them and then as a parent you are mean for not letting them go even if they might benefit from the spare time.

Children don't seem content to play at home or to entertain themselves and want to go to play centres or other leisure activities.  The latest one near us is a trampoline centre where you pay for an hour trampoline, great fun, but we have a trampoline in the garden.  At all the places there are drinks and snacks to buy so the costs really mount up and we only have one child to pay for, I really don't know how people afford it, but the places are always packed out.  We need to find more free activities to do which is basically going to the park, going for a walk or the library.  Again the ME has an impact here, I can't walk anywhere so have to use car or scooter.  In the park I can't walk from car park to play area, but its a bit too far to expect Emily to walk there and back if I take my mobility scooter.  Add to this the fact that the only toilet is in the cafe which is too far to walk from play area or car park and that to use the toilet you have to purchase something in the cafe a trip to the park gets quite difficult.  We do enjoy going to the library, but it doesn't take long, I could sit there all day, but Emily likes to be in and out with her new books.  It saves us buying books too, well in theory anyway.  If there is a book that you really want you can reserve it to collect from your branch, it is 90p, but still cheaper than buying, it's free for children's books.  Of course you have to remember when the books are due back or the fines mount up pretty quick and you don't save money.  Going for a walk is not an option for me, but I can use my mobility scooter in warm dry weather, sadly we don't often get that in this country!  Today it is late July and it is cold and wet!  Great start to 7 long weeks of school holidays.

On the subject of books, I do have a weakness for books and have more than I can read.  May are bought second hand or from places like Book People who have great offers.  Why can't I wait until I need something to read or go to the library?  I also have a Kindle with loads of books waiting to be read, again I fall for the special offers, but there are also a lot of free books and you can sign up to websites that let you know what today's free books are, although I often miss them as by the time I get the notification it's too late as the notifications are on US time!  I do like reading, but thanks to my ME brain I can't always concentrate and have no idea what I have just read.  I am really confused by the book I am currently reading, but have to keep going to find out what happens and it's also the 2nd of a trilogy, so guess I will need book 3 as well!!

Why does everything cost money.  I keep signing up to things to be of interest to Emily and that we can do together without too much effort, the latest being post crossing, where you get names and addresses and send postcards around the world and also receive them, but guess what it's almost impossible to get postcards unless you are at the seaside and what is available comes in large numbers and then there is the postage which is a minimum of £1!  Another expensive hobby, why do I fall for these things, it sounded like a nice idea and something to learn about other places.  If I saved the cost of the postcards and postage I might be able to visit somewhere!  Just looking on Facebook at a friend having fun at CentreParcs, it always looks fun, but we always talk ourselves out of it saying it is too expensive and wouldn't be ME friendly.  The break we have booked is good value, but certainly not ME friendly, I have no idea why we booked it, except it was a good deal and a great opportunity for Emily.  Back to the postcards In will have to send the minimum number and then unsubscribe if I can find out how, why is unsubscribing always more difficult that subscribing?!

Anyone who wishes to win book tokens for themselves and for child's school can enter here, if you don't have a school age child please enter for Rothwell C of E.

July makes

Pattern from Stitching cards

Made with buttons and mounted in Ikea box frame

Pattern from Ann's Paperart

Pattern from Embroidery on Paper for every occassion Joke De Vette.  I printed the pattern slightly larger to make it less fiddly to prick and stitch.  Paw prints embossing folder from Darice.

Pattern from Prick 'n Stitch, with flower sequins and yellow seed beads.  Card embossed card from Dee Crafts.  The fountain is stitch in a 3 strand thread rather than the usual single thread as I didn't have single in colour I wanted, but think it works to good effect.

Pattern from Stitching Cards

Christmas in July, OMG

Last weekend we visited our friends at Our Handmade Collective to see their Christmas in July event which is running until Sunday.  We bought a few things which I can't tell you about as they are gifts, but for birthdays not Christmas, I can't think about Christmas in July, I wish I was that organised, but sadly not.  We were greeted in the shop by the lovely Claire who despite a painful knee injury was as bubbly as ever.

Handmade collective is situated in the Grand Arcade in Leeds, which until recently was a very run down area of town.  It is now being brought back to life by handmade Collective and other small businesses.  In 2013 they fund raised to get the Potts Clock working again.  We were there to witness the event Clock first strike and can be seen in this picture

Emily loves seeing the clock and we have to time our visits so that we can see the clock chime. When we got home she wanted to make some of the characters out of Fimo

Not a bad first effort, who knows we could be selling the in OHC in a few years time!!

We also had a lovely lunch in Just Grand Vintage tearooms.  Staff were very helpful and friendly and there were gluten free options including a fresh baked scone which I couldn't eat so had to take home. It's like going for tea at your Grandma's, seeing the decor and crockery.  The toilet is papered with magazine pages from women's magazines from the 1950's and 60's, it's brilliant, Emily thinks it is amazing that there are things even older than Mummy.

Meet Jenny

Jenny has taken up the challenge of running her own handmade jewellery business, Decadent Dragonfly, from home. She makes original and bespoke pieces of jewellery from a range of materials, and generously donates a portion of profits to Invest in ME. Here she talks about her inspirations and hopes for the future and how she balances running a business alongside her M.E. 

Do you have a business name? 


'Decadent Dragonfly' - choosing it took ages and was a bit of a mission!  Firstly I had to choose something that sounded right and that I liked, then I had to research it to make sure nobody else was using it (that happened a LOT to my first few favourites!) or it had any untoward connotations (like sounding a bit too much like a strip club, for instance...).  Then it had to pass the 'fellow designers' test, where my friend, who works in a building with lots of designers and arty types, told them the name to see what they thought - a few went West at this stage as, apparently, peacocks aren't fashionable any more, but luckily dragonflies are!  :-)  Dragonflies are also the symbol for transformation, courage and power, which I think is appropriate to those of us trying to make the best of our 'new' lives (with M.E.) by starting our own businesses.  And the 'Decadent' bit comes from 'Cabaret': "Divine decadence, darling"!  As soon as I found something that satisfied all of those criteria, I jumped at it and started using it straight away!


How did you get started with your business? 

Like many people with ME (PwME) I started crafting as a form of therapy and as a way of feeling productive without going over my limits.  I've loved messing about with jewellery since I was a child, and when my hubby offered me his old tools from his university days I jumped at the chance to learn a new skill that wasn't too strenuous (plus our cats are far less interested in my jewellery than they were in my knitting and crochet efforts!).  I saw others making and selling items through the ‘Make ME Crafts’ Facebook page (the crafting arm of ‘Invest in ME’ and decided I’d like to join in, and haven’t stopped since!  I never expected it to turn into a ‘proper’ business, but as I got quicker at making and improved my skills it became more and more of a viable option as something I could do from home and at my own pace. 

Where do you get inspiration for your designs? 

I'm very inspired by nature and the interesting textures and colour combinations that exist.  I wish I could talk about trips to foreign lands, exotic locations etc., but as you can imagine that’s not really on my agenda, so I find I visit places ‘virtually’ by watching nature documentaries and looking at pictures on the internet (Pinterest is amazing!), and often draw inspiration from them.  I'm also inspired by fabrics and prints that I see, other people’s projects (for example, a DIY project that someone else has done which isn't jewellery-based but I like the ‘look and feel’ of) and even by scenes on the TV which catch my eye (I have been known to pause the programme and take pictures of the colours or outfits or interior décor that I like!).  I'm also often inspired by the beads themselves – often an accidental pairing of two strands lying next to each other in a drawer can spark a new piece or whole collection.

What is your favourite part of your craft?

Collecting beads and other ingredients, swapping them around and finding unexpected combinations that work, seeing the colours and design come together, and watching the final piece materialise.

What is your least favourite part?

Repetition!  It's not good for me physically or mentally!  Unfortunately some of my most popular pieces involve performing the same action over and over again to create the final piece, so I have to pace and take regular breaks.  Luckily I now have some 'gizmos' that help take the strain off and make life a bit easier, like my trusty 'One Step Looper'.

Also, the amount of time we now need to spend on social media promoting our wares and generally being 'entertaining' - it feels like you need to spend about 3 hours a day constantly saying 'please like me, please like me, look at this cat picture, isn't this funny, please like me, please like me' and that seems like such a huge waste of effort :-(

Oh, and missing out on events and craft fairs because I'm too ill.  Major bummer :-(

Do you have a favourite material to work with, or favourite types of jewellery to make? 

I'm definitely a glass and stone girl, they are my favourites, but I enjoy variety so I also use wood, felt, ceramics, metal and recycled and re-purposed objects, plus acrylic/plastic as it is so light, which is good not only for me but anyone with ME who wants to wear my designs!  I'm looking into working with resin, and I'm learning some new skills at the moment which will hopefully enable me to incorporate fabrics and unusual prints into my designs, which I'm really excited about, and I'm learning metalworking skills, which is also enormous fun!

Do you aim at a particular market/customer/style? 

Not really – any time I've tried to follow ‘trends’ or do something in ‘this season’s colours’ nobody seems to want it, so I've decided to stick with what I like to see, make and wear, and, rather than trying to find out what certain people want and try to make that, I'm now making what I like and finding people who like it, if that makes sense!  I'm learning to trust my designs and now think, “if I like it, then someone else probably will too”, and try to find them, which is much easier now we've got the internet!

Most importantly, how do you balance your crafting/working with your ME? 

I've found (through trial and error) that I have better times of the day, so I try to restrict my making times to those peak times and try to stop before I get foggy and start making mistakes or dropping things.  It’s not easy, but I'm definitely more productive when I work this way.  I am also very kind to myself when I can’t make anything for a few days (or weeks!).  I once heard some advice at a business seminar which was “turn your biggest limitation into your greatest strength”, which for me is turning “I can’t do many fairs or make much stock” into “online exclusives and limited editions”! 

And how do you cope at busier times? Is it difficult to manage customers’ expectations/understanding if they want something quickly? 

With ready-made items it’s not usually an issue as I can generally get things dispatched fairly quickly (my elderly mum is a great help here as she’s always willing to pop to the post box or post office for me!).  I make sure that anyone who orders a bespoke item is kept fully informed of progress and I know what deadlines I might be working to, so there’s no unpleasant surprises when I have too much on or am too poorly to complete a project.  At the moment I'm coping well with the amount of orders I'm getting through Facebook and Etsy, but my commissioned pieces have had to take a back seat recently as I've been working on making stock for an upcoming Arts Fair and some local shops, which is very exciting!

How does making the jewellery make you feel?  It must be satisfying to know you’re doing something so productive?

It’s incredibly satisfying!  I love the feeling of completing an item and having that sense of “I made that”, not to mention the thrill of knowing that somebody might actually wear it one day!  The colours and beads make me happy just looking at them, so being able to create something with them as well is incredibly rewarding.

And knowing you are giving to an ME charity must be rewarding too? 

Indeed – in some ways there’s so little PwME can physically do to raise funds for charity, as we can’t run marathons or climb mountains or organise parties, so to be able to do something I enjoy which not only makes me feel productive but means others can feel good about buying my designs AND gives to charity is like getting three benefits from one activity!  It shouldn't be up to us to fund research, but at the moment that’s the only option we have, and I'm proud to be part of it.

So what plans do you have for the future? Where can we see your work?

I'm hoping to be involved in more local events (such as the Nottingham Creative Fringe, Sherwood Art Week and craft fairs) and get my work into some more local shops too.  You can see my work on my Facebook and Etsy pages, in some Nottingham  shops including Bee & Bird in Mapperley and A Stone’s Throw in Sherwood and on my shiny new website Decadent Dragonfly.  Ultimately I’d like to be able to fund the private treatments for my ME solely through my jewellery-making, so they support each other – the treatments helping to keep me well enough to make the jewellery, which then funds the treatments.  I'm not planning world domination, but I would like to see how far I can go with it whilst keeping within the limits of my illness.  

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

My tastes change constantly and I'm always finding new things to make with unusual materials (which is great from a fun point of view but not from a promotional standpoint, as everyone else seems to have some kind of cohesive 'design identity'!).  At the moment I'm still loving my 'cluster sets', and also the new stuff I've made using re-purposed textiles.  My absolute favourite piece ever is a peacock-tones assemblage piece that I made as project for a part-time jewellery course I attended, but you'll have to visit my website to see a picture of that! ;)

Personal Details

Name JENNY BILLINGS

Age ALMOST 43

Location NOTTINGHAM, UK

Day Out!

For a while I have wanted to go to the Quilt Museum in York.  After several aborted trips we finally made it last week.  Emily was at an after school event so we were able to take our time.

It wasn't the easiest of places to find and our Sat Nav wasn't working!!  But we found it.  There is no parking outside, but there is a multi storey around the corner and blue badge parking was free, which is unusual in that sort of car park.

The museum is quite small on three rooms to look in so not too much to take in and staff were very friendly and helpful.  The exhibition rooms are on 1st floor, but there is a disabled lift.  Admission is £6.00 for adults, but as I am in a wheelchair the carer gets in free, another bonus to being disabled!!

The current exhibition is by Kaffe Fassett, the lady assumed that as I had made a quilt I would know who Kaffe Fassett was, er no sorry who?  Kaffe had taken 15 quilts from the museum collection and made his modern take on them.  I thought I made bright quilts until I saw his!!  You can find out more about the exhibition here and here.  You are allowed to take photos of the quilts, but we were so busy looking that we didn't.  I have to say although Kaffe's quilts are bright and modern, we actually preferred the old ones, in a way they were so much more impressive and the fact that they were made by hand out of scraps rather than the modern quilts made with perfect material and very precise lines and stitching with machines.

Our favourite quilt was a little bed quilt

Kaffe's interpretation is shown on the wall.

The shop has fabrics related to the current exhibition, books and kits.  We ended up buying a greeting card, magnetic mosaic, Kath's Kubes (just the kubes and instructions so I can use my own fabric, but now I have to get some vylene, but me being me doesn't know which one I need or where to get it from!!) and Kaleidograph Paper Design Toy (crystal).  The trip and some of the purchases were paid for by my Mum as a birthday present, so I don't feel so bad for buying things!  Of course I have no idea when I will make the Kubes as my fabric is currently in a storage unit due to our building work.

It was great to be able to go at our own pace and look at things leisurely, you can't do that with an 8 year old tagging along, but it's also small so not to overwhelming and not too much to take in, so as things go quite ME friendly.  

The current exhibition runs until 5th September.  The next exhibitions are Quilt Art Dialogues and History of Quilting running from Sept 11th to Oct 31st.  The museum is open Mon to Sat 10 - 4.  I will definitely be visiting again.  On the website the Collections page allows you to see many of the quilts that they have in the archive or from previous exhibitions, there are some amazing ones.

My favourites include

(above is in the current exhibition)

We found a lovely cafe next door Le Langhe, the food was great and the staff very helpful and friendly, there is seating indoors and out. There weren't many gluten free options, but what there was, was excellent and they had a gluten free cake!  I don't normally eat cake, but on a special day out, you don't say no do you?!

I did of course suffer for having a day out, but sometimes you just have to go for it and accept the consequences, it was nice to go to something that interested me, spend some time with my husband and get out of the house, which is not peaceful at the moment!

Steps.....

Today was Emily's school year 6 leavers service in church.  Only 3 years and it will be her turn!  Time moves on so fast and I feel like I have been left behind as I am so stuck with this stupid illness.  I try to move on and be happy and take pleasure from things, but the illness comes along too.

I doesn't seem that long since I was 11 and moving to high school, we didn't get such an amazing send off and celebrations like they do now, it just happened. time seems to run away with us.

In church we sang one more step along the world I go, a song we had at our wedding and Emily's christening, I'm having it at my funeral too!  It always make me think of the good times and the bad, we are constantly moving along and things are changing even if they aren't as big as moving to high school.  We mark large steps the life events, but we don't notice the little steps we take each day.  For me today the steps I had to take up to the church were slow and painful and I returned home in agony and had to go and lie down.  I don't feel good that all I could do was go to the service, but was my achievement any less than those children leaving for high school?  I hope they have nicer memories of it than me of course.

When I moved to high school that was the beginning of my health problems and my progress was very slow at times, but things did still move on.  I didn't go through high school like my peers and go on to do degrees and get good jobs etc, but life did still move on and I did what I could within ,my limitations.  Instead of being proud though I feel ashamed as I didn't do what normal people were doing and didn't get the education that they got, even years later when I got a Masters degree it felt like a failure not a success as I was older and was too ill by then to get a job.

Each day I feel ashamed of what I manage to do, to me it's usually too much, but in the grand scheme of things is not much.  This week I have made 2 cards, but I feel I should have done more.  I feel guilty because I didn't make Emily's teacher a gift (Emily made one and didn't want me to), but it still feels wrong and I might still make it as it's something I want to do, but even then I won't be happy with it.  Many of the big steps in my life have been difficult and I sometimes wonder if that puts me off making the little steps as I am afraid of failure and not doing things means I can't fail, but then I feel bad for not trying.  On the other hand each day feels like a big struggle just to manage the daily routine without fitting in other things as well.

At the moment we are taking quite a big step by having building work done, we have wanted to do it for 8 years but always put it off due to cost and stress involved, but when we inherited some money last year we decided to go for it.  It should be a happy time watching it being done and planning how it will be decorated and furnished, but I am finding it stressful and worry about the cost and getting the work done after the builders finish.  I am lucky that the builders are great and aren't intruding on my life and routine and are very happy and helpful. So why do I feel guilty for having the work done, ashamed that we can afford to do it, worried that we are showing off or being unfair to those who are worse off.  one of the reasons we are having the building done is because we felt we needed to live up to expectations and improve our house as we can't afford to move.  It will be great to have more space, but it's not essential and we could just have got rid of a load of junk instead!!  We are planning it as a room for Emily so that she can have her own space as she grows up, but then it feels like we are spoiling her and not making her realise that you can't have everything.

Then I feel guilty for the things I can do as there are many people worse off than me, much sicker than me and less fortunate than me.  My default setting seems to be guilt.

I have had a bad week thanks to someone's insensitivity which made me feel useless and like I spoil things for my family too.  When I get upset I start going through all my regrets and limitations and feel worse than ever and that I am not a good wife or mother.  My pain has been really bad, I don't know if this is linked to the emotional stuff, or possibly when I feel bad about myself I try to do more to stop the thinking and to try and prove I can do things.  The emotions are draining and I have not been sleeping, so all in all a bad week.  I need to put it behind me and look for the little the things, the good things, the things I can do.  I also started feeling even more guilty about spending money as we have a lot to pay out for and it looks like I will lose my DLA sooner than thought as the changeover to PIP has been brought forward.  Losing the DLA means I lose my Motability car and my Blue Badge which both give my my little bit of independence, even if it is only that I can take Emily to school, go to the Drs and collect my own prescriptions, it's the little things that count and make me feel part way human and useful.

Mind you maybe that is not a bad thing sometimes, today I felt really ill, but still had to collect Emily from school, I was in a lot of pain and my concentration was not great and I managed to hit a sign in the school car park, luckily no damage to the car, just my pride!

Yesterday I took another big step for me, I decided to try and make myself feel a bit brighter and  to make most of the nice weather and go on my mobility scooter to fetch Emily from school and got to the local library. I lost count of the number of people who took the mickey, stared at me or deliberately got in the way and then when we got to the library for a book I had checked online before going the book wasn't there. I asked at the counter and she said it was returned to another branch and they have lost it, so I said yes but it says it is available at this branch, that's right she said because it is our copy and was returned to another branch!!! She has reserved another copy for me, but that means I will have to pay for it which was why I had checked if it was at local branch before going. I ended fed up, annoyed and in pain, not to mention insulted and wondering why I bother making an effort to do things.

So it's back to little steps, well they are today as the pain does not allow big steps, I feel like I am shuffling along like a little old lady, which according to my daughter I am!  Think we are all feeling old this week as we mark the passing of another year, Emily keeps saying time is going too fast and she should not be this old, she is 8, but then it's only another 8 years until she can leave school and make her own way in the world.

Apparently this week they added a leap second into a day as the world is turning slower, doesn't feel like it to me! I keep saying I am sensitive to movement and it is the turning of the earth that makes me feel dizzy all the time!  Well it moves at 1,000 miles an hour that makes me dizzy thinking about it.

Well time for some little steps to the kitchen to make a cup of tea, that is one thing I always appreciate.

One more step along the world I go,
One more step along the world I go;
From the old things to the new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

Round the corners of the world I turn,
More and more about the world I learn;
All the new things that I see
You'll be looking at along with me.
And it's from the old I travel to the new;
Keep me travelling along with you.

As I travel through the bad and good,
Keep me travelling the way I should.
Where I see no way to go,
You'll be telling me the way, I know.
And it's from the old I travel to the new;
Keep me travelling along with you.

Give me courage when the world is rough,
Keep me loving though the world is tough;
Leap and sing in all I do,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

You are older than the world can be,
You are younger than the life in me;
Ever old and ever new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.