Miles on my tyres

I’ve officially had the Jive for three months now.  

And I’m pleased ro report that I didn’t come anywhere near falling out of my chair in month three so that’s an improvement on the previous two months.  I did freak people out on two occasions but I think that’s always going to be the case with this chair because of how the spider-trac suspension works – when i go up a steep ramp it shoves me really down onto my back castors and the front castors come slightly off the ground.

I did 93 miles in my chair this month and set a new record for the most miles done in a day/between charges – 9.2 miles.  I was away for a few days and won’t be commenting on the rumour that I deliberately did an extra loop around the shopping centre by where I was staying to get that extra mile.  It did surprise me how much distance I covered just getting ready for the day and going for breakfast in the hotel each morning.

I was sure that if there was going to be a month when I did over 100 miles in the chair it would be this one with the number of times I went to London.  But I’m now beginning to suspect that is a goal I won’t meet.

Auntie Emma

Last week I became an Aunt for the first time! Several of my cousins have children as do one or two friends and lot of those kids know me as Auntie Emma (something which surprised me).  But last week I became a proper Auntie.  My brother and sister in law welcomed their first child which was really exciting.

Henry David Nicholas was born Tuesday 13th October 2015 weighing 8lb 1oz.

The level of excitement in the Crees family really had to be seen to be believed. I think in the past week most of us have fallen in love with the baby but calmed down somewhat. I haven’t seen my Mum with him since the weekend but I’m not sure the same could be said for the new Granny!

We didn’t know he was a boy but I’d been saying since the day I found out Geri was pregnant that I thought it would be a boy.  Until the day he was born when I was waiting for news and the word niece kept coming to mind and making me wonder if I was wrong.

Here are some photos (clicking on any photo brings it up bigger)

HENRY 008(photo shows me holding Henry when I met him in the hospital the day after he was born. It’s taken over my shoulder and my face isn’t visible. My shoulder and arm are, I’m wearing a bright pink fleece.  Henry is asleep with his eyes closed and has lots of dark hair)

20151014_154239Ben and Geri holding Henry in the hospital. Geri is in bed and they are looking at Henry, not at the camera.

20151014_155437

Me holding Henry in the hospital. He’s tucked against my shoulder and I’m smiling. The blanket I made for him is over him and I have one of my hands on top of it helping to support him/hold it in place.

cropped blanketThis is the blanket I made for Henry.  Photo was taken in my messy lounge and the light isn’t great for the colours (cream, beige like and a midbrown) but it shows the detail. It’s being held up in front of someone but their head is cropped out.  The blanket is crocheted and is made up of 25 granny squares joined together with a thick cream boarder round the whole blanket.  For some reason I always thought granny squares were too complicated for me but when I set to learning to make them for this blanket I quickly got the hang of them and after several trial runs to get colour combos and hook sizes right I now love making them.

I have loads more photos – I swear between all the people he’s met thousands must have been taken – but a lot of them are still on my phone so I’ll leave this here.  But I reserve the right to do the excited Aunt thing and post more soon (I went to something new yesterday and was asked in advance to prepare a presentation introducing me. My slides were all photos and I put one of Henry with the blanket I made him in – snuck it in on the excuse I could talk about my crafts. But really I put another photo in for crafts and used that photo of Henry to boast about being a new aunt)>

You Know You’re a Bookworm When…

You get an email from Amazon that someone sent you a gift card.

And the message from your friend is that she was going to send flowers to say thank you but she figured reading or free spending would be more appreciated.  She didn’t need to send me something to say thank you, I didn’t expect it. Just the words were enough

I would have enjoyed having flowers. They are always a rare but nice surprise. But my friend knows me well.  I’m definitely a massive book fan and they last forever or there abouts. So I’m loving that.  Currently trying to remember when a book I’ve been looking forward to is coming out (I think it’s a week or two) and if I can wait till then to spend it. Or shall I go poking on Amazon and see what I can see?

It was a lovely surprise and made me smile.

I sometimes tell people that I don’t finish every book I start because life is too short to read bad books. Unfortunately life is also too short to read all the good books. I’m making it my goal to read as many of them as I can though! So far this year I’ve read 71. And I shall use the giftcard to buy the books that may form part of books 72 and beyond in 2014 (am aiming for 100 this year having decided that last years 140 is a feat I don’t want to aim for again).

Sarah, Thank YOU!

 

Nothing About Us Without Us

I’m trying to work my way through a series of disability specific terms and especially some disability specific concepts and define them for my blog. A sort of glossary of disability according to Emma if you will.

I’ve also been asked to contribute monthly to Bea Magazine. My first piece went up there today and happily the subject I wanted to write about for them is also something I would have written about in my disability glossary. (Although I hadn’t actually planned for it to me the next entry in my glossary). I’m sure all of my readers are now breathing a sigh of relief that they don’t have to read two lots of my drivel on the subject.

My article is Nothing About Me Without Me.

The article contains a much better explanation with detailed examples etc. And people seem to have liked it. Or at least a couple of people liked the Facebook post of the link, my Dad said it was interested and Mum said it was good (but they are obv biased).

But basically nothing about me without me (or nothing about us without us) is a very commonly used disability rights term to declare the fact that no decision should be made for or about a disabled person without their input. Obviously for different people and for different levels of disability the way decisions are made will vary. And some people will never be able to make a complex decision such as where they live. But they can still have a say. Even if its just whether they want their bedroom painted red or blue. And even if they can’t actually speak.

Party Memories (part one)

Small bullet point memories of my 30th birthday party.  I’ve been putting off writing this until I feel less depressed.  I do feel like things are moving forward from that point of view but they’re still bad.  It occurred to me however that I might feel better for thinking and writing about something very cheerful so here goes…

  • It was really, really good fun. I danced so much that my back hurt most of the next day.  That was totally worth it.
  • I’d really agonised over the venue because the party room and bar are on one floor and the two disabled loos are on another (right next to each other which I’m sure made sense to someone…).  There is a lift but I’d worried with the number of wheelchair users we might end up with there could be a big hassles with that. But unfortunately we couldn’t find another venue.  I think I invited seven other wheelchair users but actually the only other wheelie there was <a href=”http://stickmancommunications.blogspot.com”>Hannah</a>. So it worked really great from that point of view.
  • My birthday is actually Christmas Day so this was a very late party (due to Christmas being a rubbish time for any other form of party).  I never expected presents and if anyone asked me what I wanted I told them they didn’t need to bring me presents.  I got loads and loads of presents actually which I didn’t expect.  Some really great stuff too.
  • In terms of who was there I’ve been using the term weird to describe it.  Which probably isn’t the right one. Unexpected, probably is. Basically when I did the invites there were people I thought probably wouldn’t be able to come and others I thought for sure would come. There were also people who I thought wouldn’t stay long and others who I thought would be there until the bitter end.  But it felt like I was wrong on all of those. It was almost like if you were one of the ones I’d suspected (or in some cases they had said)  were coming for an hour or so only you stayed for way longer and one or two I’d figured would be first in last out were anything but.
  • Of my three cousins on my Mum’s side I’d been told two (plus partners) were coming but one couldn’t make it. What actually happened was the two I was expected both didn’t due to illness but the one I wasn’t expecting and his partner turned up and surprised me. Fun stuff and a very nice surprise!
  • Several other people who had said they were coming then didn’t come.  Some let me know not to expect them in advance and others didn’t. In one particular case I found out from another friend that they’d decided not to come which I was absolutely livid about (this was a few days before the party).
  • One of my besties wasn’t well and didn’t come but then popped round the following morning bringing (yet another) unexpected birthday present and an “unbirthday” card. Apparently her husband was very confused by the unbirthday bit as he didn’t know you could buy those. Somehow he missed that fact that card making is her hobby and she’d made it! She then stayed for a while to hear all about the party which was fun. I must admit when she rang however I was all “you can come so long as I don’t have to get dressed.” and I just threw some jama bottoms on while I waited for her.
  • My mum and sister made a massive chocolate marble cake in the shape of a 30.  They made two big roasting tins full of cake and cut it out freehand (using a template). 75 eggs went into the making of said cake bits of which I believe are still in my parents freezer.
  • Everyone gathered round in a big circle with me in the middle to sing happy birthday and for me to blow out the candles.  I think my brother had difficulty holding the cake for that… he certainly said it was heavy at the time.
  • They then did three cheers for me which was embarrassing but sort of fun and everyone danced to Chesney Hawkes One and Only which is my absolute favourite song.  Brilliant and the only time we had absolutely everyone dancing.

Wow actually I’ve gone into way more detail and said much more than I planned about the party. I’m really tired and I think I’ll save the rest of this for tomorrow to save writing a total dissertation in one blog entry.  Writing this has cheered me up and made me smile though… 😉

>Bits of News

>I haven’t updated about my attempts at weight loss for a couple of weeks so I’ll start with that and then see how much further I get before my desire to be in bed relatively soon wins.

Last week my mum was away so I weighed by myself.  I struggled a lot to balance on the scales and suspect the same would have been true even if she were here.  I gave up on Tuesday after 5 attempts which all ended up with ridiculously different weights.  Wednesday I tried again and managed better.  I was 17st 2lb which was 1.5lb up.

Today my mum was back and I was 17st 3lb so up another 1lb.  My balance was pretty good today.  I always stand on the scales three times because of poor balance, needing to hold a grab rail to get on the scales etc and wanting to be sure it’s right and every single time it said the same weight which is the first time it’s done that in a long time.

I think it’s definitely got to be said that I’m plateauing.  Which is fine in a way but only as long as it goes no further then I have now.  I am getting sick of this constant back and forth I’ve been doing for the last few weeks so I’ve decided to take it right back to basics this week.  Hopefully that will get things moving again.  I’d started thinking of drinking mostly water as being boring again but starting today I’m drinking that more than anything else and I must say I’d forgotten how nice that can be.

My writing continues to go well as my last update shows (I think!).  When my creative writing restarted a few weeks ago (this week will be week 4) we had to give a short term and a long term writing goal.  Short term was for the length of the course and long term the next year or so.  We told those to the person next to us and they introduced us to the class.  I can’t remember my long term goal and the person I was sat next to wasn’t there last week to ask.  But my short term goal was to get an article published.  It was a pretty amazing feeling sat there last Thursday realising that it was only week three and I’d already achieved that goal.  I absolutely cannot wait for the magazine to come out and to see it.

I’m reading a library book at the moment and then the next one I’ve got is one I was sent to review.  It’s an advance reader copy of a new paranormal romance which is coming out in November I think.  That will be something very different for me, paranormal romance is a genre I’ve avoided ever since I tried to read Twilight (which I hated and gave up on after two chapters).  It’s very much not something I would have chosen for myself but I’ll give it a go – after all I have been trying to broaden my horizons over the last few months (some what unsuccessfully it feels like).

>A Good Things List

>When I originally wrote my Good Things List it was after three weeks without coke or chocolate.  As it’s now been more than 100 days it’s time for an update!

  • Previously I’ve had a tendency towards high blood pressure.  Today it was 128/80 or totally normal
  • Blood draws should be easier as I get thinner. Being I’m a terrible stick that’s a good thing.
  • At the beginning of the year my lifejacket straps were as big as we could adjust them.  I’ve had to tighten them a couple of times this year!
  • My measurements have changed downwards slightly.
  • My BMI has gone from 46 something to 42 something according to the nurse.
  • I bought a t shirt in a size smaller on Tuesday as they didn’t have my usual size. It’s a little tight but it’s wearable.  And it’s really cool.
  • Being down from a 26 to a 22.
  • I have gained a little weight here and there but the general trend is downwards and I’m at my lowest of this journey now.
  • I haven’t gone back above 18 stone since I hit the 17s

>50 days!

>Today is day 50 since I’ve had any coke or chocolate.  It was one of my 101 in 1001 goals to go without for three weeks.  I think currently I’m aiming for two months without but part of me is wondering if 100 days would be an achievable goal.  That would be a long term one though, I think short term two months and then ten weeks will be the goals. Short term goals on the way to long term ones are most achievable I think, and most satisfying.

For perspective I was drinking something like a litre of full fat coke everyday and eating a big bar (100g+) of something, usually galaxy.  I was managing to lose weight by cutting it down and trying to have a day or two every week where I didn’t have it.  And trying to increase that.  But it really wasn’t working.

Because the truth of the matter is I was addicted to them both.  Especially the coke.  I would get bad headaches if I didn’t have very much.  Really bad.  I suspect that has to do with the caffeine.  Given that I drink neither tea or coffee that means I’ve now been caffeine free for 7 weeks.  And surprisingly enough I didn’t really have any headaches when I first came off of it.  Which I’ve pretty much always had when I tried before and had put me off doing it a bit.  I suppose that’s part of doing it at the right time.  There’s definitely something to be said.for that.

And when I say no chocolate I don’t just mean bars of chocolate.  No hot chocolate, no chocolate biscuits, no chocolate cake, no chocolate chip muffins.  If it has anything to do with chocolate it’s had nothing to do with me.

If I worked this out right and I’m pretty sure I did, of the 17lb I have lost, 11lb of those have gone since I gave up coke and chocolate.  Looks like I need to update my good things list!

>Going Great

>One of these days I will get here to blog with enough time to write something properly.  I really will.  In fact I hope it’ll be tomorrow.  But it’s not tonight.

I weighed this morning and I was down 2lb!  Sooo pleased with that as I was convinced I’d show another gain due to yesterday’s particularly bad eating and the fact I’ve snacked a bit more this past week.  Down 12 and a half overall so that’s last weeks gain gone again and a little bit more

But I think really I have been snacking more but still less than I would have done back in the days when I was eating chocolate all the time and drinking coke.  It wasn’t unheard of for me to get to the end of a day and realise I’d had nothing to drink but coke all day and then quickly drink a small bit of water to “make it better”.  And now it’s been over a month since I’ve had either.  It’s definitely got a lot easier but I’m not sure I’d say it’s easy as such.

I am wearing brand new linen three quarter lengths from Evans in a size 22.  At the beginning of the year I was wearing a size 26 in their trousers. It’s all very yay!

Also two others things I’ve noticed

  1. I have more definition in my face.  Not much but some.  Feels a bit like my chin is a bit pointy again.  In a good way.
  2. My feet are less swollen.  My being in a chair all the time means the blood pools in my feet and they swell a bit (or a lot if I’m honest).  But not as much any more.
So it’s pretty much going good.  Add in four months with no missed meds and it’s going great, in fact.

>A Good Things List

>Good things about having given up chocolate and coke and not having had any for almost three weeks.

  • Being told repeatedly by different people that the skin on my face looks a lot clearer and finally seeing what everyone means today.
  • My eyes are brighter.
  • When I went to the nurse this afternoon her jaw practically dropped when I told her.
  • I’ve lost a lot of weight over these few weeks (over 5lb)
  • I still have disgusting feet but now it’s mostly just my nails and not my skin as well.
  • Getting lots of encouragement from different people.
  • Realising that I was addicted to Coke and Chocolate but it is something I can totally overcome.