In which I want to update…

Updating my blog has been on my to do list for weeks and I actually started to write a post a few days ago. But that turned into a whinge about the reasons I’ve currently lost my love for blogging so I left it in unfinished in drafts and then deleted it this morning.

I mean this blog is for the highs and lows and it is the place to talk about how I currently feel about sharing my life online. And more about how I feel the current ecosystem of the internet is shaping that. But I don’t feel it’s the post for right now, particularly as it seems a lot of my later posts are (or could be taken as) somewhat negative.

For the last couple of months I’ve been at cornerstone writing once a week or so with various people from my writers group. Most weeks I’ve been taking my notebook and working on some journalling.

Basically writing a stream of consciousness about whatever comes to mind. It’s very useful to help work out what I’m thinking about or clear my mind of worries/concerns. It’s very interesting how I’ll start writing about one thing and over the space of twenty minutes or two pages it’ll meander through two or three subjects to end up somewhere completely different.

But today instead of viewing writing as a process and a thing to do, it’s more about writing for a product. It’s time to do something about this blog so I’ve brought my tablet with me and I’m writing this.

The reality is I started what we now call blogging back in November 2000 for a bit of fun. It was all anyone ever expected back in the days when we called them online diaries and the Internet was new and nobody had any idea how big and integrated with our lives it would become. Now everything is all about the so-called side hustle and making money. Meaning it no longer feels acceptable to just do something for the love of it.

I still get a lot from blogging and I still enjoy going back a few years and reading old entries, being reminded of what I forgot (I regret that much of my earliest years of blogging is lost but at the same time I cringe the first few entries which I do have copies of).

I think I need to rediscover blogging for me. Not for the deals, freebies, money and hundreds of followers society would say I need. But because I enjoy it and get stuff from it.

Here’s to a new beginning!

What Book Is Next On Your Reading List?

This was the bloganuary prompt for Tues 18th January 2022.

For my 13th birthday my Auntie Sheila (who was actually my Dad’s aunt and also known affectionately as The Great Aunt) gave me copies of the Emily trilogy by L.M. Montgomery – Emily of New Moon, Emily Climbs and Emily’s Quest.

I loved them and I read them several times over my teens. I’ve thought about rereading them again in recent years but although I still have the copies of Emily Climbs and Emily’s Quest that Auntie Sheila gave me, my copy of Emily of New Moon, the first book in the trilogy is lost.

I did consider an e-copy of that to get me going but it didn’t feel right so they sat on my shelf unread but occasionally thought about. I can’t remember when I last read them, I think it must be 15 or 20 years.

Just before Christmas last year I was ordering books to give to my own nephews and niece. I added copies of the Emily books to the order – it got me over the free delivery amount. And made a very nice 40th birthday present to myself.

I doubt, when she bought them for my 13th birthday, Auntie Sheila would have had any idea I’d still want to read them at 40. Although she was well into her eighties when she died and the copies of three of L.M. Montgomery’s Anne books which have dedications saying they were gifts from her own parents as a child came from her house to mine. So maybe she hoped that would be the case?

I read Emily of New Moon last week, finished it at the weekend. I’m in the middle of Emily Climbs at the moment. And my next book will be Emily’s Quest. So far I’m really enjoying them, they’re taking me longer than I planned to read but that’s a good thing.

Later in the year I plan to revisit the Anne books too. I’ll read some other stuff in between Emily and Anne. I no longer have copies I had as a child and can’t remember how I got them. I’m pretty sure they weren’t all gifts from Auntie Sheila but I suspect she introduced me to them. If it wasn’t her, it might have been my Gran who also bought me books sometimes.

Rereading books is always different to reading them for the first time. And rereading books from childhood as an adult is even more different. I do think it’s an important part of anyones reading journey. That said, there are books I’ve loved that I won’t read again in case they aren’t as good a second time.

I’m really glad I took the chance on revisiting the Emily books after so long – and even more glad that at 40 I love them like I did at 13.

The Memory Book by Rowan Coleman

So I made a conscious decision that I wasn’t going to go on NetGalley for a while.  And I was really good.  I didn’t go on it and I ignored all their emails inviting me to read books and suggesting ones I’d like.  Then at stupid o’clock last Saturday night/Sunday morning when I really should have been in bed I decided enough was enough and I’d go and see what books they had that I might be able to review.

And so my quick five minutes look before bed turned even longer when I requested All The Books.  Several I was turned down for but luckily for me Ebury approved me for a copy of The Memory Book by Rowan Coleman so I could review and blog about it.

If you’re one of the people who sometimes asks me for the name of a really really good book to read don’t bother to read the rest of this just go and buy it right now.  I loved it and read over half of it in one sitting.

The name of your first-born. The face of your lover. Your age. Your address…
What would happen if your memory of these began to fade?
Is it possible to rebuild your life? Raise a family? Fall in love again?
When Claire starts to write her Memory Book, she already knows that this scrapbook of mementoes will soon be all her daughters and husband have of her. But how can she hold on to the past when her future is slipping through her fingers…?
Original, heartwarming and uplifting, The Memory Book is perfect for fans of Jojo Moyes.

I must admit that as much as I was really excited to read this I did put off doing so.  I’d had a really stressful day on Monday when I got it and I was so tired.  And amongst all the good things I’d heard about The Memory Book I’d kept hearing that it was a real weepy.  So I figured that wasn’t the day for that book.  It’s definitely a bit of a sad one in places but I found it more bittersweet than really sad.  But then I don’t often cry at books so I’m probably not the best person to advise on whether it’ll make you cry or not.

It did make me smile and in a few places it really really made my laugh out loud. Then I wondered if I was meant to be laughing at that.  Claire has a real gallows humour thing going on in several places in the book which I liked.  It reminded me a bit of my own disability humour but with a darker line to it.

Here’s a quote I liked:

 “I turn and look at the receptionist for one last moment, and I know this is absolutely the right time for me to come out with a witty and stinging one-liner that will make her see I am not a pitiable person and not just a disease.  But nothing comes to mind, which reminds me, only too clearly, that I am both.”

That moment when someone says something and on the spot I need to say something to make them change their mind and see more than my wheelchair is one I know all too well. I don’t find it painful, just really annoying but Claire’s all to obvious pain in this situation comes accross very clearly in the book and makes her and her situation seem all the more real.

Part of me would like to read more about Claire and her family and especially about her daughters Caitlin and Esther (Recently I’ve been writing a lot and struggling to name characters. Esther isn’t a name I’d thought much about but as I was reading this book I was struck by how nice it is. It doesn’t work in what I’m writing though).  There are a few loose ends in the book and that surprised me but at the same time I don’t want to read more about them because The Memory Book was perfect as it is.

Finally I’ve decided that seeing as how I love quotes my book reviews should contain more of them.  This is one that cracked me up.

“And I wish I’d run away with a bra on: there is something far less assertive about running away knowing that your breasts are bobbing up and down and completely out of control, flapping around like a pair of kippers. But there you go.  When you’re forced to break out of prison, you don’t always have time to consider your underwear options.”

 

Surrounded by Sadness

After I wrote the things that make me happy post on Saturday I’d planned to write some more on the subject. I will write more on the subject I’m sure but tonight sees me writing about the opposite of happiness.

Because there is a hell of a lot of sadness around me lately.

I heard of the death of a friend of mine and my parents yesterday.

It was I think the sixth death I’ve heard of in the past seven weeks. Plus my Dad was saying he and my mum know of two others who have died recently.

Two distant family members. For one she was in her nineties and I think it wasn’t unexpected. The second was unexpected and frankly in shocking circumstances.
A very vague acquaintance I’d not seen in years and who probably didn’t remember me
Two people within the wider challenger sailing community, one of whom I’d met briefly once or maybe twice but mostly exchanged a few emails with. The second I don’t think I’d met or at least his name didn’t ring a bell. But he was sailing when he died and I do know the person who was on the boat with him at the time which got me a bit…
And now our family friend.

Funnily enough mum and I used to quite often see him and his wife at the arts centre. We were there three times last week and I’d commented to mum that we’d not seen them for ages and I was surprised they weren’t at the talk on the power station. Then we went to Gyles Brandreth on Saturday and we saw his wife (we know them because she was my carer when I was tiny before I went to school and they used to visit us at least every Christmas until I was well into my teens) with who I assume to be one of her granddaughters. She was telling us about her husband. How he was poorly and in hospital but it sounded like he was in good spirits. We said “send him our love” or words to that extent. And then we went into the show.

And afterwards I was by the merchandise table waiting to get my book signed. She came by and looked at the books. Picked one up saying she’d get it signed for her husband because he’d been meant to come to the show with her. Joined the queue behind me.

Then mid morning yesterday my phone rang.

When my mum rings in the middle of the day in the week it’s usually something wrong or some sort of specific question that needs an immediate answer, often tech support for her computer. And I could tell it wasn’t going to be one of those situations where I’m on the end of the phone trying to tell her how to find something on her laptop and getting annoyed because it’s so obvious if she’d just look properly and she’s at the other end getting even more annoyed and declaring “stupid computer!” In the tone of voice she gets when she’s about ready to chuck it out the window.

And it wasn’t.

She was ringing to tell me of a trip to Tesco, of hearing that our friend had died and a long hug in the middle of the supermarket.

Yet more sadness. Like a bolt from the blue.

I’ve been dealing with a lot of problems lately. Wheelchair issues with both my manual and powerchairs, anaemia, the hospital transport disaster last week. I’ve been feeling crap. I’m run down I think and pretty stressed.

But at the same time all I keep hearing lately is about sad things. People struggling and so many deaths. I don’t remember ever hearing of so many deaths in such a short period before. And in a way that scares me.

It’s like I’m surrounded in the periphery at least by sadness and people struggling.

Am I sad? Yes and no. I’m sad about our friend who just died. I had a drink at the arts centre at lunch with some other friends. It was weird to think he’ll never make me jump again by appearing behind me in there to say hello. I was sad to hear of the other deaths too. But most of all I’m sad for all the people around me who are struggling because of that.

So as much as I planned to sit down tonight and write my follow post about things that make me happy, I can’t. Because happiness and sadness go hand in hand. And I needed to write about that sadness first.

Project 365 – Week 1

One of my goals for this year is to complete Project 365. One photo a day, everyday, for a year. Or at least to give it a really good go. It’s something I started doing at the beginning of last year but gave up on by the 4th or thereabouts because most of my photos were on my phone which went missing and I lost them all. So this year I’m trying it again.

Here are my first week and photos

the view as i wandered home. blue sky, buildings, cars and the power station in the distance.
Day 1
I took this on my way back from the supermarket. I wanted to take something to show how blue the sky was because it felt like it hadn’t been nice like that for ages. And then I realised that on 1st January 2014 I wouldn’t have that sight. The power station is due to cease generating this year and then be knocked down. A lot of people think it blights the landscape and it probably does BUT it was also an integral part of my childhood. In part because my Dad worked there for many years but also because you can see it for many miles. When we would be coming back from holiday we’d watch out for it and want to be the first to call out “I can see the chimney pots.” The saying was always that we weren’t home until we saw them. It might seem strange but I think I will miss seeing it in the distance.

the control and charger for my powerchair.

Day 2

This is the control and charger lead for my powerchair, whilst my chair was charging. The charger wire are showing a little bit. I took this because I wanted to send it to someone but as I’m writing this I’ve just realised I never did send it. Oops.

a large Christmas tree outside in the dark, lit with blue lights

Day 3

The Christmas tree in town, lit up. Mostly because I didn’t expect it to be there still and it is kinda pretty.

dinner

Day 4
Last night’s dinner. Pancetta and roasted veg (mushrooms, potatoes, carrots and peppers) cooked in olive oil and garlic. Very yummy. I use frozen veg and small new potatoes that don’t need prepping. Plus, pancetta that comes ready cubed and garlic granules. Out of the packet, into the oven tray and onto the plate. Easy.

My TV showing the Fraggle Rock ident on the screen.

Day 5
CITV (children’s ITV) turned 30 this week. To celebrate they’re having an Old Skool weekend and showing programmes that span the whole period – mostly old shows that aren’t on any more or older episodes of current shows (I think). I watched a bit. I didn’t make a particular effort and when I looked back at the listings I missed several of my favourites but it was cool to see stuff like Funhouse again. Fraggle Rock was something I really wanted to see so I took this picture of my TV with the Fraggle Rock ident on the screen. I have to say it was a little disappointing (but I was kinda distracted at that point) but I still freaking love the theme tune!

>Looking Back – and then briefly forward

>I wrote my first ever blog entry almost 11 years ago.  A couple of days ago I started playing with the “you might also like” feature on this blog and started reading some of my older entries (which go back to March 2006 on her as my Wheelchair Princess archives are also here).  And then yesterday I went back even earlier and was reading stuff from 2003/2004.  This evening I went all the way back to the very beginning 8th November 2000. And it really hooked me in.

It’s really interesting going back all those years and seeing what I was up too then.  My style back then seems to have been much more “what I was up to” than it is now.  Possibly part of that has to do with it being a diary rather than a blog.  Diaries and blogs were different things you see (totally not sure what the difference was though other than blogs having multiple entries to a page and diaries just having one).  In many ways I think I miss that style, I should make more of an effort to write about things I’m doing rather than just thoughts and book reviews.

I’d implied certain things and now I have no idea what they were “a certain person is annoying me again” that sort of thing. And at times I have an idea who it probably was but at others I’m clueless.  Plus I was much less aware of internet and personal safety – some of the comments I made about my friends with their names are completely inappropriate. Jeez I’d never write that stuff now. And at one point I named both the very small village where my Gran and Grandad lived and the town I live in.  The name of the hall at uni I lived in is used liberally too.

The other thing that it made me realise was just how long I’ve had depression.  I was diagnosed in Feb 2003 and I’ve always said that I was depressed for most of a year before that to a greater or lesser degree (things came to ahead in late 2002 but it took until Feb 03 for my friends to talk me into getting help).  Reading entries from early 2001 however I make numerous references to being depressed and struggling emotionally so perhaps it’s been even longer than I remembered.  I’m not sure how I feel about that

Several of my earlier years of blogging are lost and I’ve said before that in some ways thats a good thing because those entries make me cringe.  But actually tonight even my very first blog entry didn’t make me cringe.  It did however make me think I should do something to save all those entries just in case.

It’s very interesting looking back like that – I could do with going to bed relatively soon or I’d probably still be doing it right now.  As well as looking back however it’s got me looking forward.  In five or ten years time will I be looking back at this entry and the others I’ve written this year remembering and wondering?  I think my current blog entries wouldn’t be such a good memory aide and the feelings and memories wouldn’t be so vivid.  I think I need to change that.

>Disassemble

>My powerchair was picked up this morning to be taken to the workshop.  They’re going to take it to pieces and try and work out what’s going on.  Something was mentioned this morning about hooking it up to a computer or some such but I don’t know anything about that.  I don’t know how long it’ll be gone because it depends if it needs parts (which we think it probably will) and I’ve also asked them to replace the tyres while they have it.  Even more expense but better to do it all in one hit.

One of my favourite films as a child was Short Circuit.  There’s a totally ace scene it in where Johnny Five realises that disassemble means dead and gets really worked up yelling “no disassemble Johnny Five!”  I tried to find a You Tube clip but couldn’t.  And last week I used the word “dissemble” in an e-mail to describe what they plan to do to my chair.

The guy who picked my chair up this morning said it would probably be tomorrow before they start to look at it.

I’ve got this vision of my chair in a workshop by itself quaking going “disassemble… dead… disassemble… dead. NO DISASSEMBLE Jazzy 1121!!”

>Memories

>I’ve had this on my facebook page for a few days and I’ve been loving the memories people have left (if you’re on my facebook and haven’t commented please do so!).  So as some of my friends read this but aren’t on facebook I thought I’d post it here too.

Think fast!

Leave one memory that you and I had together. It doesn’t matter if you knew me a little or a lot, anything you remember! Don’t send a message, leave a comment on here. Next, re-post this intro in your notes and see how many people leave a memory about you. This could be scary!

>A Review of 2007 In Survey Form

>

A Review of 2007 In Survey Form

 

1. What did you do in 2007 that you’d never done before?

Got a tattoo. Learned to knit. Helped to run training for new people at work. Saw Daniel Radcliffe naked.

 

2. Did you keep your new years’ resolutions, and will you make more for next year?

I had goals I was working towards – some I met and others I’m still working on.  Still others were unsuccessful.  I will set new goals for next year as I do frequently – reevaluating my life and situation.

 

 

3. Did anyone close to you give birth?

No

 

4. Did anyone close to you die?

Yes, my good friend and “older brother” Stevie died on 12th May (which also happens to be my mum’s birthday.  When I knew he was very ill and may die I lit candles and was simply praying for him.  But all I could pray was “not another death” and also think of this survey and pray that I could have year when I could answer no to this question.

 

5. What countries did you visit?

Ireland and Scotland (in June on my JST trip)

 

6. What would you like to have in 2008 that you lacked in 2007?

If I can I’d like to come off or reduce some of my medication but I refuse to beat myself up if it doesn’t happen.

 

 

7. What date from 2007 will remain etched upon your memory, and why?

21st July – Harry Potter and the Deathly Hallows released

12th May – Stevie died

13th April, got my tat.

 

8. What was your biggest achievement of the year?

The fact that as of this writing I only have to take my medication tomorrow and I won’t have missed a single dose this year.  For the girl who spent most of last year chosing not to take the damn tablets because she “couldn’t be bothered” or had better things to do or it was just too much like hard work that’s pretty damn amazing.

 

 

9. What was your biggest failure?

 Not standing up for myself more.

 

 

10. Did you suffer illness or injury?

I actually think this year was pretty healthy for me; I had three spells of in bed for a few days illnesses and my spasticity levels are currently outrageously ridiculous BUT I only had two course of Abx and I didn’t miss a single dose of medication!

 

11. What was the best thing you bought?

New Matress and New dryer. The Jazzy also ought to have a mention here too.

 

12. Whose behaviour merited celebration?

Too many to mention

 

 

13. Whose behaviour made you appalled and depressed?

Local government services – both in the way they treated me personally and with what I’ve seen through CAB.   Oh and the medical purser on my JST voyage.

 

 

14. Where did most of your money go?

My holiday

 

 

15. What did you get really, really, really excited about?

Going to see KIM!!! We’d lost touch and hadn’t seen each other for three or four years.

 

16. What song will always remind you of 2007?

I really can’t think of one.

 

17. Compared to this time last year, are you:

i. happier or sadder? Happier

ii. thinner or fatter? Thinner

iii. richer or poorer? In real terms, probably poorer but I will say richer

18. What do you wish you’d done more of?

Spending time with people; swimming.

 

19. What do you wish you’d done less of?

Obsessing about things and getting stressed and depressed about them.

 

20. How will you be spending Christmas?

At my parents house

22. Did you fall in love in 2007?

No, love is overrated

23. How many one-night stands?

None

24. What was your favourite TV programme?

Grey’s Anatomy

25. Do you hate anyone now that you didn’t hate this time last year?

I have very different opinions of a few people but I wouldn’t go as far as saying I hate them, it’s too strong of a word.

 

26. What was the best book you read?

I had thought it would be Harry Potter and the Deathly Hallows.  But whilst that was a good book and I did love it.  In some ways it was full of cliches and disappointing.  So, probably Pride and Prejudice.  A close second would be the book I’m reading now but as I’ve yet to finish it, it doesn’t count.

 

27. What was your greatest musical discovery?

Voltaire, probably.

 

28. What did you want and get?

Lots of things – I’ve been making things happen for myself this year.

 

30. What was your favourite film of this year?

I didn’t go to the cinema once so probably Simpsons Movie which we watched on DVD on my birthday.

31. What did you do on your birthday, and how old were you?

Had dinner at my parents house, played a game of Articulate and watched the simpsons movie. We went to see Starlight Express (tix were my birthday present) a few days later. I turned 26!

32. What one thing would have made your year immeasurably more satisfying?

Nothing really.  I know that I couldn’t have undone the thing I hated most and I never can – so I refuse to obsess about it.  Especially because if it was undone I would never have learned certain lessons and wouldn’t even have realised the significance of it.

 

33. How would you describe your personal fashion concept in 2007?

Clothes that don’t fit because they are either too big or too small!

 

34. What kept you sane?

Knitting, Reading

 

35. Which celebrity/public figure did you fancy the most?

Gordon Ramsay (is slightly ashamed of that answer)

 

36. What political issue stirred you the most?

Ashley X/Katie Thorpe/Charlotte Wyatt (although we here very little about her now) – right to life, eugenics and medical treatment with disabilities in short.  As a small side note, this is the 4th year I’ve done this quiz and at least the 3rd when Charlotte Wyatt has been the issue that stirred me most (or part of it)

 

37. Who did you miss?

Stevie. Nanny, Gran and to a lesser extent my two Grandad’s.

38. Who was the best new person you met?

I refuse to name names as I don’t like this question. I know who they are however and it’s someone I met last year but got to know properly and truly call a friend this year.  Or actually there are two people that could be and it’s kind of both.

39. Tell us a valuable life lesson you learned in 2007:

Do or do not, there is no “try”

40. Quote a song lyric that sums up your year:

Well I’m not crazy
I’m just a little unwell
I know right now you can’t tell
But stay a while and maybe then you’ll see a different side of me
I’m not crazy
I’m just a little impaired
I know right now you don’t care
But soon enough you’re gonna think of me and how I used to be

~ Matchbox Twenty – Unwell.  Because it’s where I was and kind of where I still am.  Also because I’m leaving that behind and that deserves to be acknowledged.

Or because things are a lot better and this more accurately sums up where I am now:

You can spend your whole life building something from nothing
One storm can come and blow it all away
Build it anyway
You can chase a dream that seems so out of
reach and you know it might not ever come your way
Dream it anyway

~Anyway, Martina McBride

>Family Relationships

>Kathryn is hosting the next Disability Blog Carnival and has suggested the topic of “Family”. These are my thoughts on family and disability.

I’ve always been disabled and so I can’t comment on that aspect of the interaction between the two (acquiring a disability, I mean).

What I can tell you is that my sister is seven years younger than me and we have a brother who is slap bang in the middle of us. Which meant there were times when I was in my chair and she was in the buggy. Explaining to a four year old why he is the only one who has to walk is not easy. So I can remember a time when we were in a DIY store. I was being pushed in my chair (I didn’t get an actual chair I could self-propel until I was 9 or so) and Sophie was being pushed in the buggy. And Ben was screaming and throwing a tantrum because he had to walk and it wasn’t fair.

I can tell you that I used to wear night splints and that I have many memories of one going on me and one onto Ben because he wanted the attention too. When he’d fall asleep my parents would gently take his off and put it onto me. Heaven help them if they woke him up – because after all I got to wear mine all night.

And then there were the times when I would throw a fit because I wouldn’t be allowed to do something Ben or Sophie were and I was the oldest and it just wasn’t fair!! I think the worst was when I was 13 and had to have it explained to me that CP was forever.

Occasionally still I feel a little pang when they do things like I cannot. Like today sat in my sister’s car listening to loud music as she drove I thought how much I would love to drive. But that’s just one of those things were we always want what others have. I remember when I first got my previous powerchair. It was the first time I had one and I showed Soph how to drive it and then we went down the quiet little cul de sac I lived on at that time – me in my manual and her in the powerchair. She loved it and was laughing and asking if they sold those things to able-bodied people because she’d really quite like one. She did also try to take it up a huge curb and got it stuck but thats another story…

I get on well with my parents too. I would say that my CP does make things a little tense between me, them and my brother and sister too at times. But equally I know that everyone has reasons why they don’t always get on great with their family and if it wasn’t my CP and my care needs making us all frustrated and snapish it would be something else – and often it is something else. This just comes back to my tendency to blame everything bad on my disability, as I’ve discussed before.

I could write a lot more about my relationship with my family – particularly with my parents but there is a lot of background to it which would take more time than I have to explain. I have a show to watch in fifteen minutes and somethings are more important that blogging no matter how much I love it!

And with the things I am thinking of in particular I have found many people have misunderstood without knowing that background. Because those things are so opposite to the normal perception of the little crippled girl who lives with her parents and relies on them etc etc people assume that my parents are uncaring and we don’t get on. Nothing could be farther from the truth. We love each other and we get on well but they broke the stereotypes because they wanted what was best for all of us – and it was that.