Value for Money

One of my carers has asked me about two things I’ve bought lately (a stocking aid and some cloth masks) and specifically how much they’ve cost. When I’ve said “about X pounds” she’s said that’s very expensive.

I’ve been thinking about that a lot since we had those two conversations. I think she’s wrong. But only because of the bigger picture.

The mask conversation was almost irrelevant. She’s told me how much she paid and said delivery was more. I didn’t pay delivery. Hers came from somewhere abroad (I forget) and took ages to come. Mine were here in a few days, from (I think) London. She wasn’t comparing like from like, even before you get to the fact that knowing it’s difficult to make a fair amount of money as a crafter, I was prepared to pay a bit more.

The stocking aid (one specifically for taking them off) was £22.40. Although I just had to look that price up and had told my carer it was “about £20” I thought that was very fair, particularly given that as soon as you put the word “disability” on anything it goes up in price and that the market for stocking aids must be a niche market within that already niche market.

But.

I’ve spent the two and half years since I started wearing compression hating having to have the carers twice a day. Hating the time I lost and the tie of always having to be home/free/awake at those set times and feeling like who I was, Emma, was getting lost in the wash of the woman with lymphoedema who needed this doing to her. It had a real negative thing for me and was part of the reason why my mental health was in such a downward spiral when I started needing compression.

Everyone who knows me and my history and my level of mobility (and the amount of problems I had when I used to wear normal socks let along compression stockings) was sure that there wouldn’t be a way of my getting them off myself. The lymphoedema nurse thought getting the stocking over my heel was going to be an issue.

Eventually coronavirus hit and the risk of my injuring myself trying to get my own stockings off was less than the risk of having the carers here twice a day so much. Very long story short: I got one in the hope I could go to once a day calls, it worked. It took some trial and error to find the easiest way to do it and it takes ages (but I’m getting quicker!) and in two and a half months I’ve probably had support to take my stockings off less than ten times.

Starting next week I am actually going to have a carer three evenings a week because applying my cream myself is still tricky and I think it needs doing better more often than the once a week or so Dad was doing it. But I don’t currently anticipate going back to having a carer here twice a day, everyday.

Should life ever go back to normal there will be no more leaving things early to be home for the carers or planning how I will manage to get my compression off if I go here. Or not going to things because I can’t work round an evening care call. Without being able to go out I’m already eating dinner when I want, sitting outside losing track of time for hours of an evening. Once the morning carer goes, my day is completely my own. I’m thrilled with that.

My carer has looked at it and seen a simple looking thing I can use to take my stockings off. But she’s missing what my being able to take my own stockings off means to me. And £22.40 strikes me as amazing value for money for something that’s changed my life.

Here’s (One) Two I made earlier

At the end of January I did a clay sculpture workshop and made a bowl with a lid and a jug. I blogged about it and posted pictures of the work in progress (along with a finished picture of a tea light holder I’d made in the same workshop a couple of months before). That was in my post “absolutely filthy”, the title of which relates to what I said later that day when my mum asked me on the phone how I was (I truly was covered in clay as was my powerchair).

Yesterday I picked up the finished objects after the tutor had fired them in her kiln,

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So I made a jug which is a bit lopsided and has blue bits decorating the top, a blue handle and a blue stripe opposite. It’s also got random blue spots where I dripped some paint on it then put more to try to make it look like it was meant to have those. I very much doubt the jug is water tight even though it has been glazed. I can see a spider web of cracks on it, I’m not sure they show in the photo though. The main body of the jug is a creamy colour which is the natural colour the clay comes out after firing. If I’m honest I don’t like it.

I also made a bowl with a lid (one of the photos shows the bowl with the kid on and the other shows them side by side). The bowl is plain, again just the cream colour the fired clay is. The lid is mostly cream but it decorated by a swirl made out of clay (painted yellow) and lines of clay coming off of it (painted red). I ended up trying to make something vaguely like a sun, I like this much more than the jug but again it’s a bit lopsided,

I think of the three projects I made between the two clay workshops I like the tea light holder I made in the first one the best because it looks better to me. But it was a much easier project to do so it’s probably not a fair comparison.

The End of NaNo

So it’s the end of November and Nanowrimo ends at midnight.

I’m a nano winner in that I’ve written over 50,000 words this month.

I’ve not written a book. I’ve not even written anything vaguely like a first draft of a book. Some of my friends are talking about submitting for publication pretty much straight away. They are either much better writers than I am or totally insane. Or both.

What I’ve written is a mess. It’s a variety of scenes from the idea I had. Some I planned and some I didn’t. Some work and some make me cringe just to think of them. I suspect when I look back some of the ones I thought worked probably won’t and some that made me cringe will turn out to be better than I remembered. I hope so anyway.

I’ve also come away with the feeling that the idea I had is actually for two stories rather than two arcs in the same book. And that very possibly I’m using the wrong perspective and the wrong main character. I wrote a bit using the new main character on Thursday and again yesterday and I like it a lot. It feels like better writing. But I think I’ll miss the person I thought was the main character. Which is why I’m thinking this is two stories not the one I thought it was.

More importantly being able to lose myself in my writing has helped me deal with a very difficult month with major wheelchair problems, several very sad happenings and lots of stress.

Taking part in NaNo has got me back into the habit of writing regularly once again. And it’s reawakened my love of writing. I needed that.

NaNo for me isn’t about writing a book, or finishing a book or anything like that it’s about writing and the fact it makes me do it. And tomorrow I get to go drink cocktails with a couple of very good friends (one I met through NaNo and one I got to know better through NaNo but knew before) and a bunch of new friends to celebrate that fact.

Thank You

I’m quite well known for not noticing people waving to me when I’m out and about. Or not knowing who people are when they know me.

Part of that has to do with the fact I meet so many people through things like CAB. I’m usually the only person they deal with but depending on if I’m doing appointments of gateway (10 minute triage like interviews) I might see up to 4 people in one session.

The big thing in training for CAB is confidentiality. One of the points made about it is that due to that you shouldn’t acknowledge clients outside the bureau. That’s easier than it sounds because more than likely I don’t remember them or I think “hmm I know them from somewhere…” There are obviously the odd memorable person. Regulars and such like. But the number of people I’ve met and introduced myself to who’ve then gone “I know you helped me at CAB” and I’ve not known them is huge.

One day recently I was doing some jobs in town popping from place to place.

And in one of them someone saw me and said “oh! Good Morning.” As they walked past.

I replied “Morning” and continued what I was doing.

30 seconds later they reappeared in front of me to say

“You really helped me a long time ago but I don’t think I thanked you properly.”

All of a sudden the stuff in front of me didn’t have my attention any more. I’d been only half listening expecting the usual “bizarre and probably inappropriate comment to a wheelchair user” I so often get. Not that.

I said they were welcome and asked “at CAB?” They said yes and that it’d been “years and years ago”

I’m wracking my brain but I’m getting no where on who this might be so I asked how long “years and years ago” was

It turns out years and years ago was so long ago they had to think for a minute before they could answer. And so long ago I really can’t have been advising for long when I saw them.

We talked for a few more minutes. I had to admit I didn’t remember them. They said how much of a difference I’d made, how often I’d seen them and how grateful they were. They thanked me again and left.

I thanked them and left as well.

Because that made my day.

I can’t write any more about this. Because of confidentiality. But also because even with several days of thinking later I can’t remember them.

The National Diversity Awards

So if I were to mention the name Hannah Ensor or Stickman Communications I suspect a lot of people who read this would know who I meant.

Hannah and I have known each other since our school days. Back then I was rocking the wheelie thing but not quite as well as I do now. I was walking a lot of the time which took a lot of energy and I’d fall a lot. I didn’t hurt myself often having learnt mad falling skills. And the level of acceptance i have now (possibly better referred to as my “sod it quota”) was an unthought of dream,

Hannah was this accident prone girl who was always hurting herself in the most random ways and making us laugh. I swear I have more memories of teenage Hannah turning up to our weekly German lessons on crutches or otherwise injured than not. She denies this 😉

As teenagers often do we lost touch when school ended.

Then several years ago I was in town and someone with a really cool wheelchair was waiting in a queue next to me.

Hannah.

Turns out, she wasn’t as weirdly accident prone as we thought. She had a disability.

I see her semi regularly and sometimes we get together with another friend of ours. Its brilliant. we laugh a lot and support each other and its just great to be with old friends who understand that supermarket pharmacies are rubbish, buying bread in a bakery is NOT worthy of high praise, it is possible to have a favourite type of pain and, frankly, that applying to work part time for the fire service does kind of make sense as a plan for warding off relapses of potentially life threatening illnesses

Hannah’s awesome stickman products help bring a similar sort of education, acceptance and fun to the wider public when it comes to disability awareness. She’s been nominated for a National Diversity Award in the disability category because of this work. I think she deserves it and the more nominations she gets the more chance she has.

She doesn’t want to push it onto people too much so I’m asking here – please nominate Hannah!!

Here’s her press release:
Hannah Ensor, a cartoonist from Oxfordshire has been nominated for the Entrepreneur of Excellence (disability) award at The National Diversity Awards

The ceremony celebrates some of the excellent and inspiring achievements of positive role models and community organisations from across the UK. The awards aim to recognise nominees in their respective fields of diversity including age, disability, gender, race, faith, religion and sexual orientation.

Hannah Ensor lives with HMS/EDS (being far too bendy and falling apart) and PoTS (tap-dancing heart and appearing drunk without alcohol). For her, life with an uncooperative body is normal and the freedom of having a great set of wheels is simply marvellous.

Although initially trained as an Environmental Health Officer, her conditions deteriorated significantly in her mid 20’s and she was medically retired a few years later in 2010. Around this time, Hannah Ensor’s stickmen based approach to disability started as a way to communicate while unable to put a sentence together. It naturally grew into a business – communicating about disability with charm, humour, and unerring accuracy.

Her online shop www.stickmancommunications.co.uk stocks a whole range of her products, from stickers with her ‘Positive Disability Symbol’ design, to ‘differently normal’ wristbands, and Keyring Cards which help the user explain about their disability/how they are feeling/what they need effectively and with humour. From children’s books full of life and laughter – which just happen to include disability as normal, to cartoon gift books suitable for all ages which communicate about various aspects of life with disabilities, with humour and unerring accuracy.

Alongside the shop, Hannah’s blog, peppered with stickmen, works to raise understanding and acceptance of disability, not because she campaigns, but because she writes with openness and humour about her life in a way that is easy to relate to, and her enjoyment of life shines through.
Hannah also works closely with the Hypermobility Syndrome Association (for which she was appointed Patron for kids and teens in 2012) supporting others with her conditions and helping them make positive choices in managing it.

Some comments from her customers:
“Utterly inspiring and hilarious, she’s changing perspectives on disability in a fabulous way”
“I would never have put a universal disability logo on the car because of embarrassment but now I have this positive logo and I love it – I even have it on my kayak and I’m proud to show the world I’m positively different.”
“You have given me hope, thank you very much. I only saw dark days ahead of me but I think I should look at it differently. If I lose the use of my legs then there will be other experiences that I may never have tried. Thank you for being an inspiration with your attitude to life.”

The National Diversity Awards 2013 in association with Microsoft will be held at The Queens Hotel, Leeds on September 20th. Britain’s most inspirational people will come together to honour the rich tapestry of our nation, recognising individuals and groups from grass roots communities who have contributed to creating a more diverse and inclusive society.

Big Brother host Brian Dowling and CBeebies presenter Cerrie Burnell will be hosting this year’s event. The awards have also gained support from a number of celebrities including Stephen Fry, Beverley Knight and Ade Adepitan – and the Likes of Paralympic champion Jody Cundy, and Journalist Amal Fashanu were amongst last year’s attendees.

The largest diversity awards ceremony of its kind has generated great sponsors such as the co-operative Group, Sky, The Open University and Price Waterhouse Coopers.

Theresa McHenry, of Microsoft UK, said ‘The National Diversity Awards are a wonderful way to recognise the extraordinary contribution of real people to our communities. It’s a delight to be able to support this fantastic celebration of local heroes.’

Amongst last year’s winners was gay rights campaigner Peter Tatchell, who scooped up The Lifetime Achiever Award; Trade Union activist Zita Holbourne who was awarded the positive role Model for Race and The Anthony Walker foundation, a charity established following the tragic murder of its namesake in a racially motivated attack.

The National Diversity Awards received an astonishing amount of nominations for last year’s event.

Paul Sesay, Chief Executive of The National Diversity Awards said, ‘if ever there was a time to celebrate and elevate the truly staggering diversity of talent the UK has to offer– it is now’

‘I know another fantastic spectacle of role models will be delivered and recognised this year’.

Nominations are now open and close July 19th 2013 – so don’t miss out on your chance to get involved!

Shortlisted nominees will be announced shortly after this date.

To nominate Hannah Ensor please visit: www.nationaldiversityawards.co.uk
Or for a nomination form please email: emma@thediversitygroup.co.uk

Gold!

“And on this banner day during the Oxfordshire Crip-Olympics 2012 the Gold medal in the standing frame event is awarded to Emma Crees.

In a breathtaking performance she wows the crowds and sets a personal best of 40 minutes standing in the frame.

A well deserved gold for the talented CPer who just a year ago was a novice in the standing frame with no expectation of ever achieving greatness.

The grin on her face when she realised just what she’d managed has to be seen to be believed. A gold medal day to never be forgotten.”

And the crowd goes wild….

♥ Emma

>Achievements #100daysofwriting #amwriting

>Today is Day 50 of 100 days of writing.

Halfway there.

If this challenge was a roller coaster we’d be just at the beginning of the downward drop. Not quite there yet but on the small level bit knowing its coming just not quite sure when.

I’ve said before and I’ll say it again I’m sure but the way I’ve been getting on with this challenge is massive for me. It really is a huge achievement, showing that I’m leaving my depression behind. Probably not completely, I doubt that’ll ever happen, but in a very noticeable way.

I’ve written a poem all about achievements to celebrate all I’ve done. I don’t think I do that often enough.

Achievements

Always striving to reach a goal
Chasing a dream, a distant wish
Hoping it’s not unrealistic
It may seem impossible
Even so don’t stop
Voices may say you won’t be able to cope
Eventually you’ll prove them wrong
Many times it will seem too hard
Enough energetic encouragement will see you through
Never mind if others aren’t encouraging
Tell yourself to keep trying, that you can
Success is surprisingly sudden, relish it but don’t stop.

♥ Emma

>You Know You Have CP When…

>…You aren’t sure that getting discharged from physio is the good thing everyone else is making it out to be.

I went back to the hospital on Wednesday and saw two physios and an orthotist. They were very pleased with the progress I’ve made with the standing frame (and so am I). I’ve been able to maintain the improved range of motion in my ankles and my feet are still looking what I consider to be wrong – they used to turn in a lot and I can’t remember a time when they didn’t. Now they are straighter (I believe my talus – one of the bones in the foot – is now in neutral position rather than rotated inwards).

I do keep looking at my feet and thinking they don’t look right. But the fact is they are right for the first time in years or maybe even ever. A friend of mine popped round on Thursday and kept commenting how good my feet and legs look now (my spasticity is better controlled and I can keep my knees bent for a few minutes now if I concentrate rather than automatically spasming and locking out straight) and saying she couldn’t stop staring at them. I was joking with her that her secret is out and that I now know she’s a leg woman and attracted to me for my legs.

Anyway, back to the physio – my posture has improved which I believe should slowly help with pain. And my legs appear stronger meaning my standing transfers are better. I still have to use my arms to do it and always will not least because I have rubbish standing balance. BUT I am now using my legs more to push myself up in conjunction with pulling with my arms rather than just grabbing hold of something and pulling myself up – which had resulted in me pulling a grab rail off the wall at least twice.

The orthotist said that I would get no benefit from splints or another type of orthotics that I’m not getting from using the standing frame. I was very pleased by that! I’m actually quite enjoying the standing.

So I’ve been discharged from physio but will see the consultant before Christmas and there should be a physio in that clinic. I am a little apprehensive about being discharged but figure it’ll be ok. The interesting thing about it is that people keep commenting “well done” or “congratulations” when I share my progress and I think it’s a weird thing to say – because I can’t see that anything big or amazing has come from this long, hard process. Then again as I sit here writing this I’m beginning to realise just what it is I’ve achieved – with the help of various physios and all the other people who have supported me. It might be me that’s benefitting and my legs which show these small improvements but I couldn’t have done it alone.

>A complete list of the items I have completed on my 2nd 101 in 1001 list

>Today being day 1001 I’ve just sat down and worked out what’s completed.  I’ve completed 54 goals this time round which is slightly better than the first list which I completed 51 goals from.  Several I was very close to completing (more this time than last time I think) but didn’t get there.  Whilst I never aim to complete the entire list I do hope to better it with my third list (which I am very excited about).

Here are the goals I’ve completed

1. Read Jane Eyre by Charlotte Bronte
2 Read the first Swallows and Amazons book and the rest if they’re any good
3 Read War and Peace
4 Complete Thing a Day one year
6 Make a serious attempt at learning to Crochet
9 Complete NaBloPoMo
12 Go to bed before midnight every night for a month
13 Buy a new more appropriate life jacket
17 Take a crafty course at the arts centre
18 Enter some creative writing competitions
26 Read 250 new to me books during the 1001 days
28 Make a serious and continued effort to become A Writer
29 Go to see We Will Rock You
30 Join a Stitch n Bitch type group
31 Take meds everyday for six months
33 Read 100 books in a year
34 Spend at least one day a month away from the computer for a year
35 Spend at least one day a week away from the computer for a month
36 Try to have one day a week where I don’t eat in front of the computer for three months.
39 Go shopping at hobbycraft
40 Make more time for crafts
41 Drink more water
43 Sort the black hole known as “under the bed”
44 Reorganise all of the flat and possibly get some parts decorated.
45 Get blinds for my bedroom and possibly the lounge
46 Investigate getting a cleaner rather than carers
48 Get emotional/bored eating under better control
49 Find out from mum exactly how much stuff she has of mine from pre uni, get it back and sort it out
50 Have a go at mosaic making
51 Have a go at weaving
52 Read Catch 22
53 Stop stressing about finances so much.
55 at the end of the 1001 days donate £1 to charity for every goal not met
56 at the end of the 1001 days treat myself to something special. Budget – the number of goals met x £2 each
57 Start a memory/keepsake box
58 Go three weeks without eating chocolate or drinking coke
66 reconnect/get back in touch with old friends
72 create/buy notecards with some of my photos
75 go on a random day out
79 make more of an effort to recycle
80 Buy fewer new books (use the library, charity shops and borrow them from people instead)
81 come up with a funky and appropriate bag which can live on my powerchair safely and securely
82 make more of an effort to actually walk
83 sort my sofa out so I can use it more
84 Lose some weight
85 Buy new cloth pads
86 paint my nails more often
87 spend an entire day in my pyjamas
88 write about my school days
94 buy new bedding
96 visit the Ashmolean
98 remember and mark people’s birthdays
100 research family history/genalogy
101 on day 1001 publish a new 101 in 1001 list

>Oxford Regatta 2011

>This past weekend was the Challenger English Championships 2011.  And as it was held at Oxford which is my “home” sailing club I was able to go.

I went up Friday to help get things ready but it ended up with my Dad helping out and me sitting in the club house chatting to other sailors who I only see at these regattas.  One of them gave me some really useful tips on racing skills so that was good and cleared up something I’d been confused about.  Also, gossip and catching up is always good.

Saturday started with the traditional pre-regatta bacon and sausage sarnie.  After the briefing I was told it was suitable weather for me to go out (the fleet was going but it’s up to the individual helm whether they go and the weather wasn’t great) so got ready.  We got me ready and on the water but unfortunately didn’t get far (we were only on the water about 2 minutes) when one of the safety crews came over and having already had to deal with two broken boats due to conditions told me that it wasn’t suitable for me and I should go in.  As that was someone who is knowledgable about the type of boat I sail and knows my limits, my buddy and I basically went “if he says we go in, we go in.”  Conditions had changed and those of us sailing with a buddy wouldn’t manage in what they’d got too.  Challengers are great because you can sail single handed or with someone on the side if you need it but technically they aren’t designed to have the buddy so that was it.  I sail alone most weeks but in the regattas take a buddy for support and confidence.

Sadly the conditions hadn’t improved after lunch so I didn’t get out then either.  I did enjoy my traditional regatta lunch of sausage chips and beans though and spent a pleasant afternoon chatting to people, reading and going for what for me is a long wheel.  I didn’t enjoy the bit when I was 2 minutes away from being back inside and there was torrential rain leading to me being a bit soggy!  When I later heard that during that storm the wind had gusted up to 37 MPH I was exceedingly glad I’d stayed on dry land.  More than glad.

I’d been told that there was more hope I’d be able to get out but that it was still going to be gusty so it wasn’t guaranteed.  But it all worked out!

Two races in the morning back to back and I managed to do both of those.  That’s only the third time I’ve managed to do that.  I wasn’t in the best position in the boat but it all worked out.  We seemed to manage the course really well.  As always I got lapped by the single sailors but I seemed to be much nearer the end of the course when they were half way round their next lap so that was better.

Following another plate of the traditional sausage chips and beans and a change of clothes it was back on the water for the afternoon.  We managed to get me in a much better position in the boat and fix the sail so it wasn’t as flappy.  Things seemed much improved all round.  The first race went well and I really enjoyed it.

 I was tired though and kept having short bursts of clonus which due to the position my ankle was in were painful (unusual as clonus doesn’t usually hurt but my ankle was in a v.weird position for me.).  I really wanted to try the 4th race but on grounds of being able to transfer and move the next day and recognising that this is my first year where I can physically do 3 races a day I decided discretion was the better part of valour.

I was a little bit worried by doing so I’d messed up my position in the rankings.  And it was close but I beat my next closest opponent by 1 point and came first in the Bronze Fleet.  Meaning that by some fluke I am the Challenger Class Association’s Bronze Fleet English Champion 2011.  Not something I could have predicted but I’m really pleased and proud.

 This is the trophy that the champion wins every year and then gets passed on the next year.  It’s made of wood and has a barometer in the middle of it with various brass plaques on it. At the top is the logo of the Challenger Class Association and at the bottom it says what the trophy is.  The other plaques have people’s names on, their home sailing club and when they one.  I’ll need to get myself one of those added.  It’s a bit of a funny shape and I’m wondering if that’s because it’s supposed to look like a sail.  I might ask.

This is the trophy that I get to keep.  It’s blue and originally I thought it was made of perspex but actually I now think it’s glass.  It has a medal engraved on it and in the middle of that is a silver inlay with the logo of Oxford Sailing Club.  Underneath is a bronze plaque, on the left of that it says 1st and then next to it it says Challenger Bronze Farmoor 2011 over 4 lines.