At the moment (18th January 2019)

So, this was the week that was…

This week I finished listening to an audiobook that I started listening to on New Years Day.  East of the Sun by Julia Gregson was a very interesting book. I was hooked to start with and really wanted to know what happened. By the end I was fed up with it and ready to be done (but still wanting to know). It felt like it could have been seriously trimmed down.  I have been wondering however if part of the issue is that I had it in audio. The narrator was a good one but I definitely read much, much faster than I can listen in audio. And I have to admit to being surprised how many pages the print version had versus how long the audio is – I had been anticipating it was about 100 pages longer than Goodreads says it is.

I have been reading other stuff but finishing books is a slow process right now. I have actually started writing a blog about that, I’ll post it in a day or two.

Not counting this blog, I have written around 1000 words this week.

Crafts wise I finished the scarf I was working on last week and started another one. My plan is to finish that and do one more (which will finish off my stash of now discontinued Wilkos super chunky yarn) and send them off.

We have started putting together another edition of Tenants Times. I’m volunteering on this one as editor with someone else backing me up. But this will be the last one I edit as the rules state you can only do three years and then someone else has to take over for at least a year. I’m looking forward to seeing what we come up with this time. And I’m also looking forward to letting someone else take responsibility for the next one, I’ve enjoyed doing this since 2015 but it’s time for fresh blood for TT and a fresh challenge for me.

Somewhat unusually for me there’s been a lot of TV watching lately.  I’ve been watching a lot of Criminal Minds which I continue to love. I’ve also been watching the first season of Skin Wars on Netflix which is a bit of a love hate thing. I love, love, love the art but I hate the way you see so little of it. Those bits are too rushed. The new series of Call the Midwife got off to a great start and I liked the first episode of season 2 of Star Trek Discovery. But I still think that Discovery suffers a bit from being a Star Trek series and would be better as a stand alone series.

I watched a film. I basically never watch a film at home but I watched Birdbox last weekend. It took me three sittings. I liked it but as good as it was it really didn’t live up to the amount of hype I’ve heard about it. The ending was too abrupt for my liking and I had a lot of questions. I am tempted by the book but told it’s a lot darker and just as open to questioning. So perhaps not.

Care has been tricky this week. Lots of changes at the last minute (not all of which I’ve known about) due to staffing issues. And it’s always harder to deal with them coming when I’m tired like I am this week.

Dad and I went to Reading Hexagon to see Sandi Toksvig in her one woman show, National Trevor, last night.  It was good and I was really glad we went. Some very funny bits and a few bits we didn’t enjoy as much. It was definitely one of those “you had to be there” things because it’s hard to describe what happened and have it sound as good as it was.

A good week!

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.