WOYWW 188

After completely forgetting about WOYWW last week, I thought I’d better make an appearance this week! The whole holiday season had me out of sync and what limited routine I normally have went completely out the window.

Thank you Julia for organising another weekly nosey fest so that we can all see what everyone is doing on their work desk. A wonderful opportunity for inspiration and friendship! If anyone reading this hasn’t a clue what I’m on about, click on the WOYWW link in my sidebar which will take you to Julia’s blog and you can join in the fun.

This week it’s more a case of “What’s On Your Work Floor Wednesday” – for the past couple of days I’ve been working on some new spoke guards for my wheelchair. I’d like to get these finished by 24th Jan. when I’m going to a craft show in Exeter, and I’m feeling rather ashamed of my current, very tired and old decorations on my wheelchair!

This is a frame grab taken from the video I’m making of the process – I haven’t bothered to photograph it again for WOYWW as nothing much has changed, just a couple more layers of papier mache on the spoke guards. The video will be in several parts and I won’t upload any of it till it’s completed, but watch this space!

I’ve also been busy working on my new Zentangle album and now have the pages and ring binder to put them in. It’s looking great, and will be a lot easier to use than the old one. I have several recent posts about the ATC-sized cards I’ve done of each pattern, so I won’t put links to them all. If you have time, have a wander.

(Note: Page showing reverse side of cards with step-out instructions has been blurred for copyright reasons.)

Also, I’ve been designing my first Zentangle patterns! These are also lurking in my recent posts and you’ll find “Y-Ful Power,” “Y-Pod,” “Nemnies” and “Spawn.” “Stonewall” is on its way.

Thank you everyone for your good wishes for Rev. Ernest Bear’s surgery – I managed to complete all the work before Christmas and it ended up as part of my Christmas present to my hubby. He is so thrilled to have his precious bear back all nice and smart ready for the New Year! I’ve put new pads on all 4 paws, and also added little patches (hearts on his hands – he gives a LOT of love!) and matching patches now decorate his blue trousers, and he’s got a new pair of red braces. All his clothes have had a wash, and I think he’s looking pretty chuffed about the whole thing!

Happy WOYWW everyone, and I hope I manage to visit a few of you this week, but when I’m feeling well enough to do anything, I’ve got to crack on with my spoke guards.

Wallaby Catch-All

The delightfully-named Wallaby Catch-All is a sort of sling/pouch arrangement to be attached underneath a wheelchair to carry things in. The US suppliers, Advantage Bag:

http://www.advantagebag.com/wheelchair_underseat_catchalls.htm

describe it as follows:

“CATCH ALLS

“For use with Rigid and Folding Wheelchairs
Securely attaches with convenient Velcro hook and loop to bottom horizontal and rear vertical frame tubing.
Forms a net shelf under the Wheelchair seat.

“A great way to utilize wasted space.
When filled assists in keeping chair from tipping back.
Available in Black and four sizes.”

I bought one of these for my first wheelchair, and it was absolutely ideal. There is nothing equivalent available in the UK.

When I got my new wheelchair recently, I decided to transfer it over, but it was designed for a wheelchair with a lower frame as well as an upper one, and the new Quickie Helium has an extremely lightweight, minimalist frame which dispenses with the need for the lower frame; when I attached the Catch-All to this, it was too high, and was difficult to put things in, and also did not hold enough. I revisited the Advantage Bag site and was pleased to see that they had introduced further Catch-Alls into their range, but they were all still designed for wheelchairs with the double frame, which I found surprising in view of the number of chairs coming online these days with only the upper frame like mine.

I did not want to buy any other sort of bag because they don’t hold enough, so I decided to adapt the Catch-All that I had. I obtained some black hemp twine from Ebay and proceeded to crochet some sides for it. After I had done this, it was a simple matter to tie the Catch-All onto the frame of the wheelchair with black tape.

This has proved even more successful than I’d hoped. It looks good, and anything I put in it stays there. On my previous wheelchair, the sides were open, and on one occasion I lost something out of the side, but this can no longer happen.

I am intending to contact Advantage Bag and let them know what I have done, and recommend that they introduce a design along the same lines, which can be used with the new design of wheelchair frame, and which is secure at the sides.

My New Wheels - Update

Having used my new wheels for a few days, I've decided they aren't quite "tippy" enough, making it hard to do wheelies - back-wheel balancing is an essential wheelchair skill which increases independence and enables the user to climb small kerbs and negotiate over objects. I rang the Exeter Disability Centre this morning to check that someone would be in the workshop, and my hubby very kindly drove me over there again this afternoon.

After a bit of trial and error to get it right, they have adjusted the centre of gravity backwards a bit, so that the chair now feels a lot more nippy and manoeuvrable without being unstable.

Also today, the gentleman from the company who supply the power assist system phoned. Unfortunately he is not going to be down in our area in the foreseeable future, and after some discussion, my hubby spoke to him, and arranged to go up to Hemel Hempstead to take the new wheelchair, and the brackets off the old one, so that they can transfer the system over.

It's a day's work, so my hubby probably won't hang around to wait, as it's a 3 or 4 hour drive from here; they will send it by courier when it's done. It was a question of weighing up the cost - if my hubby stayed overnight in a bed and breakfast, and also added his petrol, not to mention the time he'd be giving up, it might end up more expensive than getting them to send the chair back by courier. I am very reluctant to send it up from here by courier because it requires specialist packing in a good strong box, which I am unable to do.

Anyway, my hubby has arranged to go up on Monday, all being well - it has to be confirmed with the engineer to make sure he has a slot to do the work. Hopefully it won't take more than a couple of days before I get it back again.

When my old one went up to be fitted with the system originally, there was a mix-up with the courier on the way back, and I was without it for about 10 days, which was simply awful because I was reliant on an Iron Maiden hired from the Red Cross - it was like sitting in a steel box - terrifically heavy and unmanoeuvreable, quite impossible to do a wheelie in, so I felt as if I was nailed to the floor, and with absolutely no adjustments on it at all, so after sitting in it for an hour, I was in pain! How the NHS thought they could get away with prescribing this sort of wheelchair for so many years is beyond me! At least they now have a much better range to choose from, and also a voucher scheme to enable you to buy the wheelchair of your choice to the same value as the one that would have been prescribed, and to add to the voucher from your own pocket if the one you want is more expensive. (This is what I have done.)

The mix-up with the courier meant that instead of the nice air conditioning unit that the Dartmouth Health Club was expecting, they got my wheelchair instead!!! I'd have been just as miffed as they probably were, if I'd got the air conditioning unit instead of my wheelchair... At least I got a refund on the courier fee.

So it's all happening! I should be well and truly kitted out by Christmas. Watch this space.

My New Wheels!

Yesterday we went over to Exeter to collect my new wheelchair which had arrived a lot sooner than I’d expected – I was fully prepared to have to wait till after Christmas.

It is extremely stylish in black – a lovely blank canvas to work on when it comes to pimping! It was instantly very comfortable, and I could immediately tell the difference between a wheelchair that has been tailor-made to measure and one that has not, although my old Rolls Royce was very comfortable. After using it for a while, however, I don’t think it’s quite as tippy as I would like – wheelies are quite difficult to do – so I will arrange to go back and have the centre of gravity adjusted backwards a little – the power add-on company say they can adjust this to compensate for the extra weight of the system, so that it remains the same for me.

After picking it up, we went to do some shopping, and I really missed the power system – we’d left the old Rolls Royce at home because the car with the ramp was in for servicing – my hubby had to push me most of the time outside (not pleasant for me – I hate being pushed!) and uncomfortable for him as the handles on the new chair are too low for a tall person. In the shops it was fine, because the floors tend to be low-friction which reduces rolling resistance.

I specifically ordered the fold-down push-handles because handles on the back of a wheelchair give out a powerful message: “I’m helpless/a crip/a baby – push me!” and it’s not unheard of for well-meaning ABs (Able Bodied people) to grab hold of the handles and push a wheelchair without the user’s permission (again, presumably, because they think that because their legs don’t work, neither do their brains, and they have no autonomy). Fold-down handles are a very good idea, because they are virtually invisible when folded, but can be snapped into position when needed. I am pleased that these ones are easy to fold down again, at the touch of a button, single-handed, while seated in the chair. One of the things I didn’t like about the Kuschall wheelchair I looked at initially was that the fold-down handles were not as discreet – when folded, they projected above the back, which spoilt the line of the chair.

The frame of the Helium is extremely minimalist, doing away with the lower frame of the Quickie GPV (the model of my old Rolls Royce), cutting down the weight considerably. The whole chair is slightly higher than the old one, but that is no problem, and it’s really nice no longer to be sitting on terminally sagging upholstery! The brakes are small and neat and do not project upwards like the Rolls Royce ones, which sometimes catch on clothing. Their mechanism is very clever, and easy to operate.

I am glad I spent the extra money to have decent upholstery on the back, which looks extremely stylish as well as being made of breathable fabric, and having a pocket on the back to stow small items.

Overall it’s a cool piece of kit and I can’t wait to get the power system transferred – which may happen before Christmas – I phoned the company this morning and it depends on whether the representative is going to be in our area to collect both chairs and return them in as short a time as possible as I am reluctant to depend on a courier. Whatever happens, I shall have to resort to a hired Iron Maiden again for the duration – not a prospect I am looking forward to!

Here are some pictures. Firstly, beside the old Rolls Royce for comparison:

The front frame is not as sloping, and is also tighter and more compact laterally. This picture shows the push-handles in the extended position:

You can see the minimalism of the frame in this shot. The next picture is the back view, showing the push-handles folded down, and also the pouch on the back of the chair. You can also see the camber adjustment on the wheel axles. The wheels, of course, are quick-release, and the back folds down onto the seat when you pull the cord at the base, for easy stowage in the car etc.

This shows the side and back view.

The brakes are placed discreetly below the seat frame. In the open position they look like this:

and to close them, you simply pull the levers towards the wheels until the brakes click beyond top dead centre. Releasing them is just as easy: simply push the levers away from the wheels and they spring into the open position. Very pleasing design!

I am extremely pleased with my new set of wheels. However, they look very naked and unadorned at present, and I can’t wait till they come back from having the power system installed, hopefully before Christmas, so that I can go ahead and bling them up ready for Christmas and beyond!

When we went shopping after collecting it yesterday, I bought some new baubles and tinsel to go on it, in silver and purple. I am going to put my black spoke guards on, with the bling on them, and eventually I shall design and decorate some new spoke guards with a more 3-D collage effect. For more permanent decoration, I am hoping to attach some purple hot-fix gems in swirls down the front frame, and also along the outer edge of the side guards, which have a nice little recess just crying out for a line of sparkles!

Feeling much better today!

Well, I think Lloyd's prayers are working - I felt much better today than I've felt for ages! Thank you Lloyd! After my usual very slow start getting going in the morning, I eventually made it into my ARTHaven and I've had quite a productive day! I am looking forward to taking some photos of my current project, which is a stationery box for my mum for Christmas.

I made good progress with it today. I made a little calendar to stick on the front part, using the calendar tool in my desk top publishing program - it took a while but I'm very pleased. I've made a little cover for it, and also a holder for postage stamps. For both I used Jiminy Cricut to draw the text with the Cri-Kits pens - you put a pen in a special holder and put that in instead of the cutting blade, and it draws instead of cutting - awesome! - and then put the blade back to cut the shapes.

After that I started decorating the cards I'd made to go in the box. The larger ones now have a pocket attached, into which a tag can be placed. I've cut the tags but they've yet to be decorated. Each one will have a different sentiment stamped on it, and my mum can choose which tag to insert into the pocket on the card. All the colours co-ordinate so she can mix and match. I've also got to decorate the small 3 x 3 inch cards, and put embellishments on the big ones, and then make envelopes for them all.

I also decorated a little pen to go in the box, and made a holder for it alongside the note pad. I bought a few mini-ballpoint pens off Ebay recently. They are very slim, and exactly the right length to go in this box. They are brushed steel in colour, so I have coloured one using alcohol inks in pink and green to tone with the box. It did rub off a bit, so I've painted the pen with gloss acrylic gel medium which I think should protect it a bit.

You remember on Monday that I said I'd found a new blog to explore, and that there would be more on this? It's the Wheelchair Pride blog, and I am highly delighted that a piece I wrote has been published on it - hop over and have a look at my pimped up wheelchair!

http://www.wheelchairpride.com/2010/11/shoshis-pimped-wheelchair.html

I also rather fancy this:

http://www.wheelchairpride.com/search?q=underglow

I love the idea of the disco light, but to have two!!! Looks cool, doesn't it!

While you're on there, do have a look at the exoskeletons. I think this is the most amazing piece of modern technology I've ever seen.

It's great that the link to my article on "Wheelchair Use and Attitudes" (see page 48 of the Invest in M.E. journal) is also on there, and a link back to my blog here - hopefully I'll get a nice lot of hits and some good comments!

I am so glad to be feeling a bit better today!

Wheelchairs Again

Today my hubby drove me over to the Exeter Disability Centre (the wheelchair suppliers) again. I got my NHS wheelchair voucher paperwork in the post today, so I was now in a position to make a final decision on the chair and get it ordered.

Last time we went, I had more or less decided on the Kuschall one, but having had time to think about it, I decided I really did want the Quickie Helium, my original choice, and after lengthy discussion with these 2 gentlemen, and also with Mark at Wheelchair Services, this is what I am going for, and I think it is going to be a good choice. Both the EDC chaps and Mark have contacted the manufacturer (Sunrise Medical) and it appears that the frame strength issues have now been ironed out, and one or two other teething problems, and although it’s not as robust as many, with the sort of treatment it will receive from me as a part-time user, not pushing it to extreme limits, there’s no reason why it won’t be perfectly fine, despite the added weight of the power system. It's very cool and compact, and has the sort of optional extras that I wanted. Here’s the picture of it again:

The two gentlemen completed the lengthy order form, after a lot of measuring and asking me what options I wanted etc. - you have the basic wheelchair frame of a specific measurement to suit you, and then you choose everything else from a range of options, e.g. there are several different wheel styles, front castors, sides, upholstery etc. etc. Some things don't cost extra but others cost considerably more – they were both quite embarrassed about it, acknowledging that most of it is a rip-off and they don't know how they justify charging what they do - but it is a small niche market and these chairs are not really mass-produced, although overall a lot are made - but they are not "off the peg." The voucher has just about covered the basic chair, but the extras I want, I have to pay for, and I also have to pay for the power add-on to be transferred from the old one. I think it's worth it, though, because the voucher is good for 5 years, and I am going to live with this, and I might as well get exactly what I want, and know that I am happy with it.

The hardest thing to decide on was the colour! In the end I reluctantly rejected purple (!) and have gone for black, because I will be adding my own decorations and it is a good “blank canvas to work on” – the white is really cool, but probably not terribly practical. As soon as I get it I will post some photos.

The only remaining thing now is for EDC to contact the power add-on people and confirm that what we are about to order is compatible (wheel camber angle etc.). When that's done (tomorrow) they will confirm with me that all is well, and then send off the order form. It will take several weeks, apparently, but they think I should have it by Christmas, although whether I'll have the power add-on done by then, I don't know.

So it’s all happening at last! I’m really looking forward to getting my new wheels!

Exoskeletons

OK, probably you think exoskeletons are just for insects and lobsters. Are you aware that they are also for people these days? I've been exploring a new blog (of which more details next week, so you'll have to endure the suspense until then!) which has highlighted these exoskeletons, and provided a link to the website:

http://www.exoskeleton-suit.com/

Basically, the exoskeleton is an incredibly sophisticated piece of technology consisting of parts that you strap to your body, with a power supply you carry with you, and computerised controls. This amazing breakthrough is allowing paraplegics to walk again for the very first time. This has to be one of the major medical advances of the modern age. For a person suffering a SCI (spinal cord injury), this event is the most devastating thing that can happen to them - in an instant their life is totally changed when they are told their injury is permanent and they will never, never walk again. Quite apart from the total readjustment of one's life as a wheelchair user, with all the problems of accessibility, getting around, maybe changing one's job, and enduring on a daily basis the negative attitudes of able bodied people to wheelchair users, there are numerous health problems associated with these injuries, such as pressure sores which are potentially life-threatening, brittle bones, muscle atrophy, etc. etc.

With an exoskeleton, the individual can stand upright unaided, and walk with a remarkably normal-looking gait. At present they have to use crutches with the device, but this opens up the world in a way that the wheelchair never can. Just to be able to stand and look people in the eye, at their level, is a bonus in itself.

It may sound like science fiction, but several companies are already producing prototypes, and it will not be long before these hit the market. They are, of course, incredibly expensive at this stage, and until they are in full production, they will be out of the reach of most people, but the price will come down eventually, and even if they still remain the most expensive option, they will be available.

Here is a video of just one of them:

 

 

Amazing, don't you think? Check out the website for full details and videos of the others featured there.

Wheelchair Assessment Continued, and Flu

Just a quick update - I had the Wheelchair Services man on the phone today to say that he's processing a voucher for me, and I can go ahead with the Kuschall wheelchair as long as I'm happy with the 90-degree front angle - he said it won't look as aesthetically pleasing with the foot rest turned round, but I said you won't see it with my feet on it anyway! - which he agreed with. When the voucher comes, we can book an appointment with the Exeter place and go and get measured up properly.

So the wheels are rolling! All very exciting.

However... I've now gone down with flu - or at least a very bad cold - I had an appalling night with nightmares and even more disrupted sleep than usual and I'm feeling simply terrible today. Nothing to do but ride the storm and hope I get over it quickly and it doesn't settle on my windpipe like it usually does. I seem to get this every autumn and I thought I was going to escape it this year... Not so, unfortunately. So I'm languishing on the recliner with a hot water bottle nursing a headache that nothing seems to touch, achey jaw, streaming nose, the works.

Wheelchair Assessment Continued

Just a brief note today to say we've had a message to the effect that the Kuschall AirLite IS compatible with the power add-on system, so it looks pretty definite that this is the chair we'll be going for. Not sure what the next step is, but tomorrow I'm going to phone Mark at Wheelchair Services and tell him what happened yesterday, and find out what we do next.

I'm still rocking with laughter. Last night I posted on the Brainfog (M.E.) forum that there was a blow by blow account on my BOG!!!!!!!!!! What made it worse was that they were all laughing and quoting what I'd said, and until someone kindly quoted it in bold, I hadn't a clue what they were on about, because I didn't spot it originally, and I didn't spot it when quoted either!!! No hope for Foggishoshi, I'm afraid! I was ultra-foggy last night after our big adventure, so I really think SOME allowances should be made, lol!!

They are all dead jealous on Brainfog - such cool wheels! (It's called Wheelchair Envy, he he!!)

I just want to get this wheelie show on the road now!!

Wheelchair Assessment

My appointment with Wheelchair Services was this morning. This is the first time I've been properly assessed, as my existing wheelchair, my Rolls Royce, was second hand and obtained on Ebay. It's been a reasonably good fit, and very comfortable, but having put on some weight since being ill, it is now a very snug fit, and it's also showing some wear and tear - it's probably getting on for about 15 years old now - and since my condition shows no sign at present of improving (rather the reverse), I decided it was time to be properly assessed and to get a new wheelchair - Rolls Royce Mk II!

We arrived half an hour late for the appointment, because the place proved extremely difficult to find – the letter did not include a map, or any indication that the place was actually on an industrial estate. Mark, the gentleman who assessed me, discussed the various options in light of my OT’s letter; it appears that they can issue me with a voucher to the value of a rigid ultra-lightweight manual wheelchair, or a dedicated power chair, but not for a manual chair plus power add-on, which is what I want. It is going to cost quite a bit to have my existing power system transferred, but considerably cheaper than getting a new one.

The NHS has certainly improved – they are now offering a much greater range of wheelchairs, including the one I’d originally looked at at a possibility: the Quickie Helium.

However, if I received this chair from the NHS, I would not be allowed to add my power system. I could only do this if I got a voucher and bought one myself.

Mark was not sure that this was the best chair, though; for my clinical needs and to be suitable for the power add-on, he said he’d really recommend another Quickie GPV, which is what I’ve got. I’m not too keen on this though. He said he can be flexible, and will give me the most generous voucher he can. He suggested that the 90-degree angle of the front frame of the Helium might not be comfortable for long-term use, although it does look cool! The advantage is an extremely small turning circle and great manoeuvrability, and being able to get close to things.

The voucher would also cover maintenance and repairs, which is good.

Mark referred us to the Exeter Disability Centre (EDC), which is a commercial operation, supplying all sorts of mobility aids, and having in stock a wide selection of wheelchairs – they deal with them quite a lot, and the staff there are experts and can advise what is best. My hubby suggested we went straight over, and after stopping for a pub lunch, we duly turned up, and the two gentlemen there were extremely helpful, and our time there proved very useful.

When I suggested the Helium, they immediately advised against it. There have been various teething problems with this very new chair – people have been returning them in droves with bits breaking etc. Not good news. Quickie have given an assurance that these problems have been dealt with, but even so, EDC said that although it has the reputation of being the lightest chair on the market at present, Quickie seem to have sacrificed strength for lightness, and if I am thinking of adding on a power system which is pretty heavy, they could suggest several chairs which would serve the purpose a lot better.

They had several there, and of course they weren’t set up for me, so it was hard to judge what would be best; I tried this one, a Top End Ti, a titanium one from the USA:

but I was looking for something with a more minimalist frame, and it was also quite high, which would make getting my legs under tables more difficult – although there is some adjustment for this.

Finally they produced the Kuschall AirLite. Kuschall is a Swiss company and they make beautiful wheelchairs – I have a friend who got one recently, although his is a lightweight folding one with high back and push handles. He is very pleased with it. The AirLite is one of the Kuschall K series and they are substantially made but very lightweight. The K4 has a more sloping front than the AirLite – the AirLite has a 90-degree angle, which Mark at Wheelchair Services said might be uncomfortable.

However, I sat for quite a while in the Kuschall AirLite and found it extremely comfortable – the back rest needed adjustment, and when we discussed the angle of the front, they suggested turning the foot rest around, which would have the same effect as a more sloping front without sacrificing compactness, and when this was done, it was even more comfortable.

He telephoned the suppliers of my power add-on system to ascertain whether this will be a suitable wheelchair for it, but unfortunately the gentleman in question was out; however, having said that the Quickie Helium would be suitable, it looks likely that the Kuschall will be too – it fits most standard modern wheelchairs.

So it looks as if the Kuschall AirLite will be the wheelchair of choice.

As for my existing wheelchair, both gentlemen at EDC said that it was far too sloping which makes it very hard to get close to anything, something I have experienced constantly. My hubby hired a wheelchair for me from the Red Cross when mine went away having the power system fitted, which was a traditional NHS-style wheelchair whose design has changed little in over 50 years, and very different from a modern lightweight. I called it the Iron Maiden because it was extremely uncomfortable, heavy and unwieldy, and I felt completely trapped when using it. However, that’s another story!

So now we wait, pending hearing whether my power system will fit the Kuschall or not. I shall phone Mark to let him know what we’ve discussed. If we get the go-ahead, we will make an appointment with EDC and have a detailed prescription filled out, which will include full measurements, and all the required specifications and extras I require, such as back angle, footrest height, flip-down push-handles, frame colour, etc. etc. This will then be forwarded to the manufacturers and the chair will be provided, after which it will be sent away to have the power system transferred. As this will involve removing it from Rolls Royce Mk I, it looks likely that I shall be back with the Iron Maiden temporarily! Eeeeuww.

After that, however….. Catch me if you can!!!!!!!!!!!

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!

South West Disability Show

Today I went to the South West Disability Show at Westpoint, Exeter. I went last year as well. It's on a much smaller scale than Naidex, the big national one held each April at the NEC, Birmingham. Being smaller, it's easier to take on board, and there's little danger of missing anything.

As soon as I went in, someone said “I saw you last year!” This is because I'm so recognisable (once seen, never forgotten??) with my Rolls Royce wheelchair with its flowers! In fact, everywhere I went, I heard the word “flowers!” following me!

(This was taken a couple of years ago at our nephew's wedding.)

I saw several people I knew, and also met some new people. There was a super lady who was trying out a scooter - actually it was more like a boy racer motorbike! It had an evil looking front with a headlight, chrome, go-faster-stripes, and came in a snazzy dark red colour! It was her face that said it all. She had a smile that met round the back, and she zipped off in it at high speed, and the blokes on the stand said “we were told to get rid of all the scooters at the show - that one's disappeared for sure, but we were supposed to be selling them!!!” She and I then had a race, and she managed to scare a policeman! This lady had a beautiful daughter who looked after her - there was such a special bond between them that was lovely to see - a very caring, special young lady. Then came the question as to whether she could actually afford this scooter, and she said “I could always sell my husband!” - he was standing there - and I said yes, but the scooter wouldn't make you a nice cup of tea, would it!

I had a lovely chat with a couple over lunch - she was severely disabled with MS and she had a wonderful caring husband. It made me think - there are so many of us who depend on our loved ones for the support and care that we need - these are the unsung heroes of our society who care for disabled relatives day in, day out, with very little recognition, given the huge expense they are saving the nation.

The Global Leather glove man was there again, and he recognised me from last year too! We had a nice chat. I noticed a deterioration in his health since last year, and he finds many aspects of his disability to be very restricting, but he still manages to run his business. I bought a new pair of gloves to replace the ones that are now falling apart after much use! He said that some people complain that his gloves fall apart. He said if you walk long enough in shoes, they fall apart, too! Wheelchair gloves take a lot of punishment. I'd rather have gloves that eventually fall apart than hands full of blisters.

I met a lady with a prosthetic leg, and she had nail art on the toenails! Brilliant!

So many really lovely people to meet and chat with, disabled and able bodied alike.

It was a long, tiring day for me. I am now practically horizontal on the recliner, having had a cup of tea (courtesy of my wonderful hubby bless him!!!) and a sleep. It was well worth going, though, as it's an opportunity to see the latest equipment and keep up to date with what's going on.

Here's what I saw when I was leaving, as part of the display of a local firm who supply adapted vehicles. This is the very latest in ramped access vehicles, complete with the latest lightweight sporty wheelchair. (Note the nice authentic touch of the rust on the vehicle!)

Orders, anyone?