Tuesday, 31 August 2010


We went to the last of our local village fetes yesterday, and as usual I went round the stalls with an eye for anything cheap that might come in useful for my creativity (polite-speak for any old rubbish people don't want any more!) - and as I've found on many occasions, what is rubbish to one person is a treasure to the next. There were also a few craft stalls with people selling things they'd made, or had bought in (I bought myself a very nice African necklace with beads made of discs cut from ostrich egg shells lol!), and amongst the cheaper things they were selling were some bracelets made of beads strung on elastic. Very pretty, but always much too small for my big wrists!

I bought a couple of these, and then some strings of beads and shells, and some more bracelets on the bric-a-brac. I also found 2 gorgeous old wooden rulers and snapped those up at once - I've seen these vintage items used in Tim-style crafts as embellishments and thought I could do the same. At 10p each, who's going to complain?

Here's a picture of the glorious jumble of goodies I bought, prior to my taking them apart and sorting them away safely arranged by colour.

Beads from Staverton Fete 30 Aug 10

Charity shops and market stalls are also good places to look out for stuff like this. Lots of necklaces are pretty boring and wouldn't draw a second glance, but the individual beads can be quite attractive, and as decorations together with fibres and ribbons on tags etc., they would gain new life as objects of beauty!

Saturday, 28 August 2010

Shoshi's Meltings!

I have been keen to try some experiments in melting materials and fusing them together to make interesting "papers" or "fabrics" for use in my papercrafting, either as backgrounds or embellishments. After a false start the other day, trying unsuccessfully to melt bubble wrap in a way that was half-way useable, last night I discovered the most incredible blog (which I am now following!) by a mixed-media artist working in St. Ives in Cornwall, that mecca of artists. I am soooo impressed with this lady's work, and hope one day to visit her studio or gallery. Here's a link to her blog:


I spent most of yesterday evening browsing through this blog, and was totally overwhelmed by the incredible creativity of this amazing artist. She is generous with her techniques and willing to share how she does things, and this has given me the push I needed to get started with my "meltings" - and is broadening my horizons in so many other ways with my art, too.

This afternoon I made 4 test pieces using heat to fuse materials together.

For the first one, I lightly painted a piece of bubble wrap randomly with blue and green acrylic paint, with a touch of white, over the raised bubbles. Immediately, before it had a chance to dry, I used this to print onto a piece of white card. There was still some paint remaining on the bubble wrap. I then proceeded to sprinkle silver embossing powder over this, shaking off the excess. I then selected some small "twinklies" - little confetti shapes in sequin material - in blues, greens and silver, and sprinkled these on top. Finally, I laid a piece of cling film over the whole thing and ironed it. When doing this, you have to cover the work with baking parchment or the whole thing will stick to your iron and ruin it (poor Carolyn learnt this the hard way - she posted a picture of her iron after the event!).

Here's the result.

2 Fused Bubble Wrap with Silver Embossing

And here it is again, alongside the bubble wrap printing I did at the beginning:

3 Fused Bubble Wrap with Silver Embossing with Bubble Wrap Printing

I think it's a credit to my camera how well these pictures are coming out, because shiny, reflective or irridescent surfaces are notoriously difficult to photograph!

I then moved on to another piece of bubble wrap. Having washed out my paintbrush with a little water in the plastic bowl that I'd squirted a small quantity of acrylic paints into, this now contained a sludgy watery mix of the blue and green paints, which I proceeded to use to paint onto the raised bubbles of the bubble wrap. I then sprinkled it with gold embossing powder this time, and shook off the residue - unfortunately quite a few water droplets came off with it, but I was able to soak these up with kitchen paper, and managed to get the excess powder back into the pot. Again I added some twinklies, and covered the whole with cling film, and again ironed it.

4 Fused Bubble Wrap with Gold Embossing 2

This one didn't photograph quite so well - it is highly reflective.

I then tried fusing two pieces of cling film together (no bubble wrap this time), sandwiching various things between them. I used some lengths of metallic thread from my goldwork embroidery box; the coppery thread was great, because when I tried to shred it a bit to separate out the strands, I found that there was one which I could pull, and the rest rouched up, giving a slub effect. I then doused the lot with some bronzing powder, and laid a few Angelina fibres on top, and after the final layer of cling film was laid on top, I ironed it as before. In one or two places the two layers have not fused, so I need to iron it again.

5 Cling Film with Metallic Threads, Angelina Fibre and Bronzing Powder

In the top left-hand corner of this picture, you can see the edge of the bubble wrap printing - I used the piece of card as a convenient white background in an attempt to show this piece off a bit better - it's quite hard to photograph and it didn't show up well on my green craft mat.

The final piece is mostly Angelina fibres, in blue and pink. These fuse to themselves with heat, but don't stick to anything else. The result is a bonded, non-woven fabric with incredible iridescent hues, which can be sewn, washed, dry cleaned, glued, whatever you want! When I'd laid out the fibres how I wanted, I sprinkled them with gold embossing powder, covered the lot with baking parchment and ironed it. You have to be careful not to over-heat the Angelina fibres or they lose their colour and iridescence, but you do need quite a bit of heat to melt the embossing powder, so it wasn't certain whether this would work. As it happened, a certain amount of the embossing powder did melt, but a lot more fell through the mesh of fibres to the mat beneath. I turned the sheet of bonded fibres over and wiped up the remaining powder with it, and covered and ironed it again on the reverse side. Most of the embossing powder was then incorporated into it, and on one side, it was pretty solid. Turning it over, more of the bonded fibres were visible, with the gold peeping through between, which was a much nicer effect. Again, this is a highly reflective surface and hard to photograph, but here is the result.

6 Blue and Pink Angelina Fibre with Gold Embossing Powder

I also tried melting some old blister pack which had contained tablets, thinking that the ragged foil on the back might give an interesting effect. I cut out some pieces and laid them down, bubble side up, with little gems under the bubbles, and ironed it. The result was not satisfactory - the gems did not show up well, and didn't respond well to the heat, and the whole thing looked a mess, so into the bin it went!! Oh well. Can't win 'em all... I only wasted about 6 or 7 gems.

I am very pleased with my first proper efforts at melting. Here's a picture of the four pieces together:

1 Meltings - Gen View

I think this technique has a lot of potential. It would be a good way of using up those bits and pieces left over from other projects that you don't know what to do with, but can't in all conscience throw away! I've got quite a big bag of pretty ghastly mixed sequins which I think would do well being sandwiched between bubble wrap and cling film, with a bit of Angelina fibre to help them on their way!

ARTHaven in Operation at Last!

I finally got down to doing some stuff in my ARTHaven today. I spent quite a long time setting up the video camera on a tripod, so that I can record my work in progress when I want - if I leave this set up permanently it will save a lot of time.

Here is how it looks now:

18 ARTHaven with Video Setup 27 Aug 10

I am highly delighted that my clip-on spot lamp will clip onto the camera tripod, so that I can direct the light exactly where I want, right onto the work. I was unable to buy a daylight spot bulb for it today, but will look on the Internet - this will give better light than I'm currently getting. I also want to put daylight bulbs in the floor-standing Anglepoise and the overhead light.

It is so thrilling to have my ARTHaven in a state where I can actually start creating in it! There's a long way to go as far as organising it is concerned - I am still at the stage where things are pretty chaotic, and I still can't find everything, but as time goes on, I am sure this will improve.

I've got a cassette player set up so that while I work, I can be converting my old tapes to mp3s on the desktop computer. There is room on the old computer table to have my large laptop set up so that I can do any graphics work on that - when I get my Cricut machine, it will be easy to connect it up to that computer.

The left-hand corner of the work table seems to have designated itself as my "hot" area! I have the iron there, and the heat gun, and on the floor between the 2 tables, there is room to prop up my glass heat-proof mat out of the way when it's not in use. I have found that ironing on the table with the heat-proof craft mat does make the green cutting mat bulge a bit with the heat, so putting the craft mat on top of the glass mat helps prevent this.

I now have rolls of cling film and baking parchment to hand, for my experiments in fusing and melting - the baking parchment is essential for protecting the iron! See more on my "Meltings" post.

I went shopping today and bought quite a few embellishments in the cake decorating department of our local hardware store. I am keen to try Penny Duncan's various flowers (see her blog: http://pennyduncancreations.blogspot.com for details.) There has been a lot of discussion on the Creative Inspirations forum on what to use for the best for the centres of the hibiscus flowers, and I found these today:

Flower Stamens from Lawsons 27 Aug 10

I bought a couple of bundles each of white and pink. I also found these jewelled ones in bundles, so I bought one of each:

Jewelled Flower Centres from Lawsons in Vase 27 Aug 10

Here they are slightly more in close up:

Jewelled Flower Centres from Lawsons 27 Aug 10

Perhaps we are sometimes we are a bit limited in our thinking when it comes to finding materials and embellishments for our creativity, going only to crafting shops or websites. I have found that by thinking "outside the box" a bit, there are plenty of gorgeous materials to be found in other places, like kitchen shops. Cake decorating can provide us with beautiful stuff - I've bought little jewelled stems, plastic wedding rings, and very pretty ribbons in the cake department, which I couldn't find in the local papercrafting shop - which does have an enormous stock of fabulous things - so much so that I usually have to tie a knot in my credit card before I go in there!!! There is also an embroidery and general craft shop in our town, which has different things again, and right at the top of town is an art shop which stocks all sorts of artists' materials, paints, paper, easels, you name it! They also sell a lot of general stationery. So we are very well provided for!

I also bought some little cutters in the hardware shop today, officially for cutting shapes in sugar paste for cake decorating, but I am going to use them for friendly plastic. I bought a butterfly, and a couple of flower shapes. I also found some very pretty organza butterflies which I bought to add to my collection of embellishments, and my hubby found a pack of 12 die-cut cup-cake wrappers with a very pretty design of butterflies - if I wanted to, they would be very easy to separate into their component parts, and there are literally hundreds of butterflies in the pack, all ready to be inked, painted, embellished and applied!

My hubby gave up quite a bit of his time today to help me. The hardware shop in question is almost inaccessible with the wheelchair unless I have help. I can get into the first bit (china and glass) but the main part of the shop is up 3 very steep steps, so my hubby had to drag the wheelchair up while I staggered up on foot! (There is an upstairs as well, but I didn't need to go there today - it's mostly tools and decorating stuff.) The main part of the downstairs is all kitchen stuff and it's a really really fun shop to look around! They've got gorgeous coffee pots, every sort of cooking equipment, and of course, the wonderful cake decorating department which seems to have everything! You can hire tins to bake large cakes, and stands for wedding cakes etc. and I believe they also organise cake decorating classes.

The only drawback apart from the immediate access is that the aisles are quite narrow, and they will keep boxes of stuff on the floor, making it quite impossible to get round in the wheelchair. I have discovered this in other shops too - I appreciate that in our small, old-fashioned town, they are constrained by the ancient buildings and probably lack of storage space behind, but generally in the town, very little concession is made for disabled access. This is not helped by the town being on an almost 45-degree slope!

There are lots of gorgeous little shops with real character, on the quaint steep and narrow High Street, and you can buy things that you wouldn't find in the big cities. The town has a very friendly atmosphere, and I usually meet at least one person I know when I go shopping. I really love it, but it isn't designed for disabled people!!!

When we got back and had lunch, I couldn't wait to get up in my ARTHaven and go through my new goodies, and start creating!

Sunday, 22 August 2010

ARTHaven in the Making! - 5

I knew I'd overdone it at the end of the week... Yesterday I crashed and felt so ill that I couldn't do anything all day, and didn't set foot in my embryonic ARTHaven. When this happens there's nothing for it but to go with the flow, rest, rest, rest, and hope for better things soon!

I have felt much better again today, and managed to get up there this afternoon. I haven't done much, but have put everything into the room that was all over the landing - I've put some things away, but the rest is just dumped wherever there's a space. Here's what it looks like now:

16 ARTHaven in the Making 22 Aug 10

17 ARTHaven in the Making 22 Aug 10

They say childbirth is a messy business! This has certainly been "hard labour" - after Friday, it was looking pristine and ready, and really tidy - probably as tidy as it ever has been, or ever will be! Today it is utter chaos again, but it's a good, positive sort of chaos because all my creative stuff is now in there, if not in place. Trying to sort out where to keep everything so that it works well for me is going to be difficult, and I expect it will go through several metamorphoses until I get it right, if ever!

This has been an adventure, and I've really enjoyed it, especially the sense of achievement. Just a few weeks ago I had no idea I was going to do this, or that it was even possible, and 3 months ago, I hadn't any idea that I would be doing this seriously. It's all due to the inspiration I've had online, and the encouragement of many friends, old and new, to develop what skills I have. So thank you everyone who has taken part in this journey!

Hopefully in a few days I'll be able to post some more photos of my ARTHaven minus chaos - or at least organised chaos!

Friday, 20 August 2010

ARTHaven in the Making! - 4

I'm nearly there! Last night I worked really hard in order to get the room as ready as possible for when Wonderwoman (my home help) arrived first thing this morning, so that she and my hubby could move the furniture for me. My hubby got rid of my old monitor, and this gives me a lot more room, and will enable me to move the computer table.

11 ARTHaven in the Making 19 Aug 10

What I did last night was to finish rearranging the big black shelves so that stuff I don't use very often was pushed to the back, and stuff I'm more likely to use is at the front. Also I wanted everything flush with the front as much as possible, so that nothing was sticking out.

12 ARTHaven in the Making 19 Aug 10

This is the other side of the room, with things stacked up under the small table out of the way, so that there would be room the following day to move the other furniture.

10 ARTHaven in the Making 19 Aug 10

This is the room after my hubby and Wonderwoman had moved the big pieces of furniture.

13 ARTHaven in the Making 20 Aug 10

Afterwards I realised that they hadn't turned the brown shelves upside down on the table, so my hubby and I did that later - and I then realised that upside down, there was no space to thread cables through, so my hubby cut two circular holes in the back for this purpose.

This photo shows the final layout as far as the furniture is concerned.

14 ARTHaven in the Making 20 Aug 10

I've put the small table, the old computer table, and the small filing cabinet that used to be under the desk, in front of the big black shelves. As they are all on casters they can be moved if I need to access the big shelves. Having the small filing cabinet not under the desk has given me another surface to put things on.

15 ARTHaven in the Making 20 Aug 10

Setting up my computer took a lot longer than I thought. It was a nightmare sorting out all the cables, and eventually I had to put the computer tower on the right under the table, rather than tucked away on the left, because of making everything reach. As it is, the miserable little short mains cable for the speakers does not reach, so until I find a short extension cable, I've got no sound.

By the time I'd done all that I was wiped out, so I've decided not to do any more today. My craft stuff is still all over the landing. It's going to take a long time to sort it all out, and I am sure that it will be a while before things get permanent homes, as I will need to work in my new ARTHaven to discover what goes best where.

Finally, my dear, dear Hubby has lent me his laser printer! He's brought it upstairs, but as yet I'm not quite sure where it's going to go - I didn't really want the inkjet printer where it is, on the shelf behind the monitor. I may return it downstairs and reconnect it to the router and get it back on the network, if I find I am using the laser printer more. As I say, it's all pretty fluid at this stage. I've decided I want to put my Cricut over on the left of the main work table when I get it, as long as I can get a long enough USB cable to connect it to the computer! I may have an extension somewhere so I shall have to see.

Hope you like my new, embroyonic ARTHaven! I'm so looking forward to doing some crafting in it. It's weeks since I've done any, and I'm missing it. Not long now, hopefully!

Wednesday, 18 August 2010

ARTHaven in the Making! - 3

I've made definite progress in my ARTHaven-to-be today, and have finished clearing the desk. I generated another 4 bags of shredded paper and a huge box of old magazines I no longer want. All grist to the recycling mill! I also uncovered a humungous amount of dust... Wonderwoman (my home help) is going to have her work cut out when she comes on Friday. I'm going to ask her to team up with my hubby to move the furniture where I want it. Because there's a deadline on this, I've had to crack on quite a bit today to clear enough space to be able to move stuff around - it's a bit like a Chinese puzzle! I still want to have a go at the big shelves on the left of the room, but I think I've overdone it somewhat today (to say the least) so I may be suffering tomorrow and have to put that on hold.

05 ARTHaven in the Making 17 Aug 10

06 ARTHaven in the Making 17 Aug 10

Good news! My new monitor has arrived at last! Here's a picture of it:

07 ARTHaven in the Making 17 Aug 10

However... When the postman rang the bell and brought it in for me, he said "I hope the contents are all right!" I said "So do I! There'll be hell to pay if not - I've waited over a fortnight for this to come and if it's damaged, that will be the last straw!"

As I spoke, I noticed one corner of the monitor poking out through a hole in the box. I pulled at the top of the parcel and it came away with one hand, revealing the monitor inside, and 2 short strips of that packing material which is bags full of air. Not a scrap of bubble wrap. The postman stared, and said "I'd have coated that with several layers of bubble wrap!"

Here are some pictures of the opened box - you'll hardly believe your eyes!!

08 New Monitor Packaging 1 17 Aug 10

09 New Monitor Packaging 2 17 Aug 10

Note the hole in the corner, where the monitor was poking through!

I am amazed that it is undamaged. I plugged it in, and it worked straight away. It's a very nice monitor, and I'm pleased with it, but this has not been a pleasurable buying experience on Ebay - I don't think I've ever had a worse transaction. He will get feedback accordingly.

Monday, 16 August 2010

ARTHaven in the Making! - 2

I've had a good session today, clearing another drawer of my filing cabinet. Although this hasn't done much as far as the progress towards an ARTHaven is concerned, I feel better for having done it, as I'd wanted to do it for ages. I generated a huge pile of paper for recycling, and also 5 carrier-bags-full of shredded paper!

I've also organised the boxes for the fete and stacked things up a bit, so the floor is clearer. It is definitely looking better than it was. Don't you agree? Weeellll... perhaps you don't! Still looks a mess, doesn't it!!!

04 ARTHaven in the Making 16 Aug 10

Still no new monitor. In the meantime, though... this afternoon, that desktop computer showed all the signs of having a hard disc failure... If only it had done it 3 weeks ago! Then I would not have bought the monitor... I had originally thought of getting rid of the computer, but decided to keep it as it might be useful. Now I'm in a quandary. I think I am going to get it fixed, but rather than getting them to put a new hard drive in, I'm going to ask them to transfer its second hard drive as I don't really need 2 now. That will save some money anyway. It couldn't have happened at a worse time. I don't really want to spend a lot of money on that computer as I've got enough expenses at the moment getting my ARTHaven set up how I want it.

I'll give the computer shop a ring tomorrow and see what they say. And will I get my new monitor tomorrow???

Oh yes, and also this evening, there was a huuuuge spider on the wall in there - big as a dinner plate! Aaaaaagghhh! I hate, hate, hate them! My hubby had gone to bed, but he's such a star - he got up and got rid of it for me! I said to him "Are you still awake?" and he said "Yes." When I told him what was the matter, he said "What would you have done if I'd said I wasn't awake?" I said "If you'd said you weren't awake, I'd have known you were awake!!!"

Slow but steady progress towards my ARTHaven! It's probably a good thing I can't do it all in a rush, because I've got time to think about what I want to do and how I want to arrange things.

Thursday, 12 August 2010

ARTHaven in the Making! - 1

I've taken some photos of my ARTHaven to be - I wish I'd taken some before I started sorting it out so I'd have true "before and after" pictures! Ah well. Actually it looks a lot more messy now I've started sorting it, because there are boxes everywhere... There's hardly a square inch on the floor for me to put my feet at the moment! Several of these boxes are filled and ready to go out, either to the recycling centre or the next village fete.

01 ARTHaven in the Making 12 Aug 10

02 ARTHaven in the making 12 Aug 10

03 ARTHaven in the Making 12 Aug 10

Up until now, this room has mainly been my office (which is what I have always called it) but it has also been a craft room of sorts. The big black shelves came from a shop that was closing down years ago - my hubby got them for me - they were a dirty cream colour and I painted them black to go with my desk and filing cabinets. I've done quite a lot of sewing in this room, and all my craft stuff, fabrics, embroidery equipment etc. is stored on the big shelves.

I am hoping to downsize the office aspect of this room - I've rationalised quite a lot, and can still use the filing cabinets. One drawer is full of old cassette tapes, and this will eventually be emptied as I gradually convert the ones I want to keep into mp3 files - I've already done quite a bit. I've also got boxes full of magazines with post-it notes stuck on them indicating which pages I want information off - some of these will be scanned and saved, and there's a lot of copy typing to be done too. I haven't kept up very well with this so there's a lot of work to do!

The big cardboard storage boxes in the third photo used to be up on top of the shelves above the desk - with the sections vertical, and they held lever arch files and loose leaf binders with lots of office stuff in them. These files are now stacked up on top of the big shelves along with other stuff that needs digital archiving - at least they are out of the way for now, and have freed up the boxes, which can now be used for paper storage for my creative activities.

I am waiting for a flat screen monitor to arrive from Ebay, and then I shall get rid of the big CRT one you can see on the photos. I will probably then remove the top part of that computer desk - it's got holders for CDs up each side and a shelf on the top, with a big space to accommodate a monitor. The tower of that desktop computer is on the bottom shelf, and I shall move that under the desk eventually, and put the new monitor on the desk. The desk will be mostly for computer-related stuff, and when I get my Cricut, that will probably be on there too, or alongside on the big wooden table, which is going to be turned round and put under the window, to get the best of the light. The computer desk, which is on castors, will be moved to the other side of the room, and without the weight of the computer on it, should be fairly easy to push around. I'm going to store things I don't use very often on the lower shelves of the big unit, and push the small black table in front of them. This is also on wheels and can be moved.

I've got myself a set of little plastic boxes with drawers, and these will probably go on the big table, with shelves between them, to keep all the bits I use more frequently. I may get one of those soft storage thingies (don't know what they are called!) with pockets, that you hang over the door, to keep punches etc. in.

As you can see, I've got a big anglepoise floor lamp - my hubby got this when one of the big Plymouth hospitals was closing down after the departments were moved to the new out-of-town site - my hubby used to work as a part-time chaplain at the hospital and had loads of contacts there. They were just throwing things away that were perfectly good, and he rescued quite a lot. The NHS is always short of money, but the amount they throw away, it's hardly surprising! My dad worked for the NHS for over 30 years, and the amount of things he rescued from dustbins and skips over the years - they threw out a whole telephone exchange once, and he brought enough stuff home to set up a little intercom system so my mum could call him in for meals from his workshop! He also has one of these floor lamps, which are fantastic - they run on castors and you can move them around and direct the light exactly where you want. When my hubby brought mine home, it was painted with cream paint which was really chipped and dirty-looking, so I got some car paint and sprayed it red. My hubby was NOT pleased with me, though, because I did it on the drive outside our garage (at our old house) without putting any protection down, and he said it looked as if someone had committed a murder on our drive!!! It took months to wear off!

I'll post some more photos as I make progress. However, this takes energy which is in short supply because of my ME, so don't hold your collective breaths!

Wednesday, 11 August 2010

A Visit to my GP

I went to see my GP this afternoon with my hubby in tow. It was primarily to enlist her support in my DLA application - I've all but finished the form and need to get it off soon, and wanted to tell her just how much help I need, and what my mobility is like, etc. and my hubby came along to give his point of view, about how much he has to do for me etc. I also wanted to talk to her about my wheelchair.

She was totally brilliant! She's been a bit of an unknown quantity in the past on the subject of ME, because she doesn't know a lot about it, and I don't think that she really believes in it. This has very much influenced how I've been towards her in the past - I've always been on the defensive and allowed myself to feel guilty, and that maybe it really was all in my head etc. etc. However, this time, after filling in my DLA form, I realise just how real this is, and how disabled I really am, and I thought "I don't have to prove anything to anyone. I'm just going to say it like it is." (I gave her a copy of the Gorilla article, which I said she would find amusing, and might find useful for other patients, and help her understand why we don't necessarily always want to rush off after every "cure" on the market!!)

For the first time ever, I wasn't nervous about going. I knew what I was going to say, and said it. When she's got something practical to do, which she can actually achieve, she's brilliant - very down to earth, and very supportive and practical. It's only when confronted with weird symptoms etc. that she seems to be all at sea, but since I manage those OK by myself and she can't do anything anyway, I've decided just to use her for the stuff she's good at!

I gave her a brief précis of my mobility and care needs which I'd typed out, based on the DLA form questions, so that she's got it to hand when the DWP contacts her. She is very supportive, and I feel I've got a real ally in her over this. I asked her to support my request for an indefinite award - she said that might be unlikely, and my hubby chipped in and said "well, ask for four years or something instead of just two." I said "Don't put a figure on it, or it will limit them. If you only ask for the sky, you don't get the stars!" She laughed and said she'd do what she could. I told her what an ordeal it is completing the form, and my hubby backed me up on that, as he's seen me struggling with it over the past few weeks.

I then turned to the question of my Rolls Royce. Since I got it in the autumn of 2007 it's been absolutely brilliant and transformed my life. It's soooo comfortable, stylish, easy to manage and just great. The trouble is, I've now got a problem. I'm getting too fat for it! Oooh my goodness - and people worry about not being able to fit into their jeans lol!!! My Rolls Royce is now a Very Snug Fit, and while that's more or less OK for the summer, if I put on winter clothes, I shall need a tyre lever to get me in!! So I decided to ask her to refer me to the proper wheelchair people for an assessment and measuring etc.

I am amazed how confident I was about it. Before, I would have been too scared of being told that I didn't need one etc. etc. This time I just told her what I needed, and she was absolutely fine about it, and we had a proper discussion about it on equal terms. I was prepared, in case she was reluctant, to say to her "Well, I'm going to get another wheelchair anyway, regardless of what you say, because it's liberating and enables me to do what I want to do. Surely it would be better to get one that I have been assessed for, and which fits me properly?" But I didn't have to say any of it! she said "It's the OT who arranges all that. I'll get in touch with her, and she'll let you know what to do." She didn't know if a voucher scheme was in operation in our area, but she noted it down to ask the OT.

So, I am praying my socks off that I do get my DLA (even if I have to appeal, which is more or less 100% likely, given how things are going atm - but the GP said that in their practice they haven't had any problems with people eventually getting it even if they had to appeal) so that I will be able to afford a new set of wheels!!!

When this is all set in motion, I will need to contact the Yamaha people to find out whether my power add-on system will be transferrable to the new chair. If so, I can just put the Rolls Royce's old wheels back onto it and use it as a spare. If not, I suppose we'll have to be thinking of seeking out grants etc. (Maybe we should be doing that anyway, to help with a new chair?)

The next task will be to think of a suitable name for my new wheels!

I'll let you know how I get on.

All this has come about because I have now fully accepted that I suffer from a chronic condition and a long-term disability. I thought I already had, until doing my DLA form made me realise how much worse I am than 2 years ago, and I can't see any improvement any time soon, short of a miracle. I told the GP that I now accept that I am chronically ill and disabled with something for which there is no cure. I told her that I am OK with this, and that if she reads the Gorilla article she'll understand. She remarked how positive I am! I've suddenly got the confidence to go ahead and state clearly what I need and want, and am being really pro-active, and I'm not afraid of them any more. Tonight, I feel really great! (apart from my ME, of course!) It's like a great weight off my shoulders.

Tuesday, 10 August 2010

Disability–A Quick Update

I haven't posted on my blog for quite a few days because I've been through a bit of a rough patch health-wise, which has not been helped by the fact that I am in the middle of reapplying for my DLA (Disability Living Allowance), a state benefit to help with both mobility and care requirements. It has become increasingly difficult to obtain this benefit, even more so just recently given the state of the nation's economy (it seems all wrong to target disabled people, some of the most vulnerable in society - far more disabled people live below the poverty line than do able bodied people), and it is generally accepted that very few people receive an immediate grant. It is normally turned down, in the hope, apparently, that people will not be bothered enough to appeal. So, those who are serious about it, and I guess that goes for most of us, will have to go through the process of appealing. This can involve appearing before a tribunal, which to me smacks of criminalising disability - you have to "prove" how ill you are and justify your disability. Increasingly we are made to feel like wingeing layabouts and benefit frauds. Grrrr.

Completing this mammoth form is no mean feat, even if you were well (which of course, you aren't, otherwise you wouldn't be applying). It's incredibly stressful, because of the need to emphasise the worst aspects of your disability or illness, and major on what you can't do rather than what you can do. For someone like me, who's glass is half full rather than half empty, and who has a positive approach to life, and who doesn't want disability and illness to be my defining feature, this is forcing me to look at my life in a way that goes totally against the grain. In the background is the constant fear of being turned down on the grounds of not being believed, and the dread of having to go through a possible appeal.

The form is very long, and it involves a lot of writing, which I find very tiring in itself. Half the time I've just written "please see attached sheet" and typed it out, which is a lot less exhausting for me, as I touch type much faster (and more legibly lol!!) than I write.

This time it's been a particularly depressing experience, because comparing what I wrote last time I applied (2 years ago) there has been quite a bit of deterioration in my health, which has come on gradually - living with it day to day isn't too bad, but being faced with the contrast in black and white isn't fun.

I am going to see my GP (primary care physician) on Wednesday with my hubby in tow. I don't go and see her very often, because there's nothing she can do, and I'm not one for constantly running to the surgery with every little thing. I need to keep her up to date with how I am generally, and any specific symptoms etc. The DLA people will probably contact her to confirm what I have written in my form, so she needs to know how mobile I am and what care I need. I've asked my hubby to come along so that he can describe how it is day to day, and just how much he needs to do for me.

I am also going to give her a copy of "The Gorilla in Your House" which I shared with you recently - this excellent article describes in a humorous way what it is like to live with a chronic illness or disability, and why we don't always want to rush off after every "cure" that's suggested, which may or may not work - you can put a lot of effort into that with no guarantee of success, and end up worse off afterwards, both physically and emotionally because of the effort expended and the disappointment which results, and also financially - many of these things seem designed to empty your bank account! The article and the comments following it show that sometimes we just want to use what energy we have, to live life "now" and enjoy what we've got, even if it's not perfect. I think this will be helpful for my doctor to read. Doctors are trained to "cure" people and often find it very difficult to deal with chronic patients that they can't help - nobody likes to feel helpless and be confronted with people who bring up those feelings. Sometimes they just need to know that we are "OK" and dealing with everything just fine, and they don't have to feel they've got to "fix" everything.

I also need to speak to her about my wheelchair. I got my lovely Rolls Royce on Ebay 3 years ago, and it's still going really well, and it's very comfortable and I love it - it's been liberating for me, and enabled me to do loads of things I otherwise would not be able to do. She was very against my getting it initially, because of the very common attitude amongst doctors that if you get one, it will make you worse because of deconditioning etc. and they think it's about giving up etc. I think I have convinced her that they are not all negative, and that it has changed my life so much for the better. She hasn't made any negative remarks about it since.

However, since getting it, I have put on quite a lot of weight because I am unable to take any exercise, and just lately, I've noticed that it is quite a tight fit round the bum! That's OK in the summer, but come the winter, when I shall be wearing thicker clothes, I can see it being too small. Because I got it second hand on Ebay, and also I didn't know how long I would need it, as I got it fairly early on in my illness, I was never properly assessed or measured for it. It's been a good fit and it's very comfortable, but I think the time has come to be properly assessed. As well as my current one being too small now, filling in my DLA form has made me realise that my condition has not improved, but rather has deteriorated over the nearly 4 years that I've been ill, and there seems to be no immediate prospect for improvement, and I think the time has come to recognise that short of a miracle, I am now really a "disabled person" and I should do this properly. I am going to ask her to refer me to the proper place where I can be assessed. If I am able to join the voucher scheme, I should be able to get a voucher to put towards the wheelchair of my choice, and to get properly measured for it. Along with this service, you can also get ongoing maintenance and insurance, and further assessment if your needs change. I look on this as a real safety net - for a while I've been quite scared about what I would do if my Rolls Royce broke down!

I just hope I get my DLA re-awarded so that I will be able to afford a new wheelchair!

In addition to all this, I have been trying to clear my room upstairs in readiness for converting it into my own ARTHaven! I've always kept my craft stuff up there, and when I was well, I used to do quite a bit of sewing in there. Officially it is my office, where I have my desk, filing cabinets etc. but rearranging things, I should be able to keep my papercrafting stuff out all the time, which will untimately save me a lot of energy, and make it easier for me to get round to actually sitting down and creating some things!

With all this going on, I haven't done any ART of any kind for weeks. I soooo want to get going again!

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