Playing – a self portrait

A mistake with a flower

A messy self portrait

Part of my bedroom – this is at the end of my bed

Bobby – my bear I’ve had since the day I was born. My dad calls him Sir Robert

Yet another self portrait this time showing my tattoo (a gecko, all in black). In Reading today an older lady told me she usually hated tattoos but she really liked mine

>Time Spent With Friends

>This evening a bunch of people who’ve done the creative writing course I did got together. There were eight us all together. Some I see regularly and others I’ve not seen for months. And one person I’d not met before but hope to again.

It was great fun. Laughter, chatting, catching up and inspiration. I found lots of inspiration in the hour and a half we spent together and might have an idea for a new project and way of writing. I’ve been writing daily this week, not much but a few sentences or a few paragraphs. I’m not sure there’s anything that will come properly from what I’ve been writing as it’s mainly chaos writing and very coherent or linked but it could link in very well with this glimmer of an idea I found tonight.

It’s a long time since I sat down with a group of writers and talked about the craft that links us all. And even longer since I got together with this group of writers. I hope we can do it again soon.

>A Few Days On

>Not quite a week since I had the botox (tomorrow will be a week) and I think my ankles may be a little looser.  This is a very good thing.  It’s about the right timescale too as the physio said it takes 7 – 10 days to kick in.  I’m not 100% sure that’s the case, I need to get a second opinion from my dad, but it’s looking good.

The first lot of casts go on on Monday.  I’m feeling a lot calmer about that now but it’s still going to be very different and possibly difficult.  I’m just hopeful I get a good result out of this.  As I’ve said to a lot of people this is going to be a long process. It shouldn’t, however, be painful which is another very good thing.

Once I’ve been on Monday I really ought to start sorting out a social services referral as when I’ve got my splints I’ll need carers to help me get them on everyday.  I want to find out what timescale is involved first (e.g. immediately after the casts come off or if there will be a delay before I see an orthotist, if indeed, I need to see an orthotist but I can’t imagine I don’t) and also if these will be day or night splints. The prospect of carers again stresses me out.

I think the problem is that Oxfordshire Social Services provision being what it is I believe it highly unlikely I’ll get anything other than 15 minutes a day to help with splints and all the other things I’ve been struggling with and just about managing and even not doing since my funding was cut in 2007 will be left.  My previous experience of agency carers is that there are a lot of niggles involved and the level of funding I’m likely to get would mean a direct payment is impossible because no one is going to work 15 mins a day.

>Beginning Treatment

>On Thursday I had my first ever injections of botox.  I received six injections of a very small dose of botox into my calves.  The hope is this will improve the position of my feet and thus my standing and transfers.  I was incredibly nervous about it (and still am) as for a lot of reasons I’ve always said I’d never have botox.  Saying yes was very scary! As a child I had a similar treatment (alcohol blocks) which left me weak and I lost function and needed calipers.

Unfortunately both the consultant and my physio feel that whilst I would benefit from botox in my quads I shouldn’t be given it as it was very likely I’d be more comfortable in my chair but also lose my ability to stand, without which I’ll be totally screwed.

My legs bled a bit after the jabs and needed plasters on for a few hours.  It stung when it went in, more on my left leg than my right but that may well be because the left leg was done second.  The rest of the day they were pretty sore but that disappeared with a dose of codeine (2x 15mg) and two paracetamol.  My legs did have a weird warm feeling for the rest of the day.  Sort of like when it’s winter and you’ve been out in the cold then come home and wrap up in big socks and under a blanket and are all toasty. However my legs weren’t warm to the touch.  Friday they were achy but the “warmth” had gone. Saturday and today they’ve been fine.

I spoke with the physio Friday morning.  The next step is that I will return to the hospital twice next week.  On the first visit I will have both feet put in non-removeable plaster casts.  As the botox takes 7 – 10 days to kick in it should be working by then and allow my feet to be manipulated into a slightly better position which is a gentle stretch.  They will be casted in that position and the cast will remain on until I return later in the week.  When I go back they’ll take the cast off when they hope my leg will stay in the improved position and that they can manipulate my foot into an even better position and then put new casts on.  The plan is to keep doing this until my feet/ankles are in a normal position – 90 degrees.  I’ve been told this shouldn’t take longer than a month but could take less.  From memory I think when I saw the physio at the beginning of the month she said my right ankle is 20 degrees out and my left, 30.  I know when I’m standing this improves and they are both 10 degrees out.

This process is known as serial casting

Once the casts come off I will get some form of splints to wear – specifically I will have AFOs (ankle-foot orthotics) but on the phone I forgot to ask if they will be night or day ones. I’m not sure what my preference is.  Getting splints will mean that I almost definitely have to have care input to get them on and off.

Oh and the other thing that was agreed was if I have no response to the botox in 2 weeks I’m to increase my baclofen slowly to 60mg (currently taking 40)

It’s going to be a long road, I just hope it’s worth it.

>You Know…

>…you have extreme symptoms when you go through them with your consultant and he stops you, checks he’s heard you right and when you confirm he has his response is “Jesus.”

Was running through my meds with the consultant at the hospital when he asked about the mefenamic acid.  I told him it’s for my periods and what they were like before I started it.

Jesus is probably about right, come to think of it.  They were pretty bad (skipping a month and then having a heavy 17 day long period was my worst ever) looking back.  Mefenamic Acid is working well though to keep the bleeding at slightly more normal levels.

The hospital appointment went well I think… but that’s the topic for another blog entry.

>In Which I Am Apprehensive About An Upcoming Appointment

>I’m back at the hospital tomorrow. Only I don’t really know what for.  I rang them on Monday about various things and the receptionist referred to my appt as being at X time with the physio.  But I was under the impression that my appt was 15 minutes later than that and in the clinic with a consultant (although I believe this clinic has physios and consultants working together, I was under the impression I was going as they need me to see the consultant).

At the end of the day none of it really matter but… I was already a bit apprehensive about the appointment due to some of the stuff that’s going to be discussed (which could mean big changes for me which are never easy) and now I have what ifs going round and round in my head.  I’m told by they physio the new meds they might want to give me are sedating. Reading on the Scope website suggests one of the possible treatments is painful to administer – and I don’t know for definite but based on stuff that was said I think they might want to do it then and there if they think I’m a candidate.  And something that was discussed when I saw the physio is a treatment I swore I’d never have but am now thinking I’ll try if they suggest it.

And then there’s the fact that the transport people despite having picked me up two weeks ago from here had a question about where I should be picked up from. Here.  Or my parents old house which I moved out of 10, nearly 11 years ago, they moved out of 7 or 8 years ago and at which I never had hospital transport.  And which isn’t my most recent previous address by a long shot.  And how did they get the answer to that question? By ringing my parents and speaking to my Dad.  So much for confidentiality.

So basically I’ve just turned into a big ball of stress and it’s not fun.  Nor is depression which makes these things so much worse.

I do know it’ll all turn out all right in the end but… I wish I could skip to the end like fast forwarding through a DVD!

>Meds and Such Like

>I think it’s safe to say that at the very least I need to go and chat to my GP about my depression.  I’m much better than I was when my antidepressant was changed to Sertraline but I’m still struggling a lot at times.  That said I don’t necessarily think I need it tweaking again but I’m not sure and I need to keep an eye on these things.

And when I went to the physio she was talking about the possibility of changing my muscle relaxants.  Either an increase of my baclofen or taking something else (which said could be instead of or in addition to the baclofen).  I’m back there on Thursday to chat these things through.  That was quite interesting though because I’d not heard of one of the mentioned meds being used for spasticity and I know of loads of people who take it.  And she also queried whether I was taking anti-depressants for depression or spasticity as apparently some anti-depressants can be used for spasiticity as they relax you.  I’d never heard that before but it’s an idea I’m quite interested in.  If I don’t come back without a drastic increase in my baclofen or an extra prescription I’ll be very surprised.

The physio has also referred me back to wheelchair services as she says I either need this chair adapting or a new one as it’s totally unsuitable and she thinks part of the cause of my pain.  Wheelchair Services however are saying I have to go back on the waiting list which has an average wait of 18 weeks.

She also advised me to go back to social services and asked to be reassessed for care needs, specifically for help with socks and shoes.  I’ve not done that yet.

A few other things were mentioned as possibilities so I came back with lots to think about which is part of the reason I’ve been so quiet on this blog.

Oh and she told me I should be leaving my wheelchair in a different position (equivalent to where it would be for a lateral/slide board transfer) when I’m standing and transferring.  Getting the hang of that is not proving easy at the moment!

>Brief check in

>I’ve got lots going on and lots to think about and I’m feeling rather frazzled just thinking about how busy next week looks like it’s going to be.  I’m fine but I don’t want to blog about all the stuff I have to think about at the moment (mostly because of one person who might be reading this).  I’ll be back tomorrow with more of an update but for now a few bits:

I liked the new Torchwood but thought it wasn’t dark or sexy enough.  I think I probably need to rewatch Children of Earth however because I felt a bit like I’d missed something…  It’s certainly a very interesting premise and I just hope spacing it over 10 episodes isn’t going to make it drag at all.

And I absolutely loved Harry Potter and The Deathly Hallows part 2.  There was a second showing about 40 mins after we came out.  I gave serious consideration to go to grab my prescription as planned then getting a sandwich and going back for a second viewing but I didn’t.

I’m on google+ if anyone wants to add me.  Emma Crees.

>Ask Me Anything

>Haven’t done one of these in a while so I figured it might be fun to do one now. Plus I just thought of a question I’d love to ask another blogger but for the fact it’s off topic to their blog and irrelevant.  That got me thinking that maybe people had things they wanted to ask me but never had…

Ask me whatever you want and I’ll answer in an upcoming blog entry (so long as I’m comfortable doing so, although I don’t expect that to be a problem).

And seeing as one of my last entries was about going to see the neuro physio I’ll save myself from those questions and tell you now.  It went well and the physio seems great.  No real answers but lots to think about and I’m still processing, researching etc.  Hospital transport was, as always, a really great thing but a very long job!

>What About The Boy by Stephen Gallup

>A few months ago I had an e-mail from Stephen asking if I wanted to review his soon to be self published book (it’s out in September).  You can read more about the book on Stephen’s blog  or find it on Amazon.

Here’s the text on the back:

Nobody knew what hurt little Joseph, and no one was offering a way to help him. He cried most of the time, and thrashed about as if in pain. He wasn’t learning how to crawl, talk, or interact normally. Doctors told his parents to seek counseling, because nothing could help their son, and the quality of their own lives was at risk. Refusal to accept that advice changed their lives forever. WHAT ABOUT THE BOY? A Father’s Pledge to His Disabled Son chronicles a family’s rejection of hopelessness and their commitment to the pursuit of normalcy.

The day this book arrived a friend was here and we both looked at it and agreed I would either love it or hate it.  In reality it had both good and bad bits and I can’t say I loved it or hated it.  It was interesting and definitely has a way of drawing you into events and holding your attention.  Towards the end I did begin to be very frustrated by the book however as the author shared some views the total opposite of what I agree with and which I found shocking.

The other thing my friend and I were discussing looking at the book was the title – What About The Boy?  I took that to mean that it was about a fight with medical staff etc to see Joseph for who he was and to give him the chance to be a little boy – to do fun things and have more in his life than just various different therapies.  However I hated the use of The Boy in it and thought What About Joseph would have been a better title.  Because, just like me and everyone other person disabled or otherwise, Joseph deserves to have who he is recognised – using The Boy struck me as a touch of depersonalisation. My initial ideas based on the title proved not to be quite right. Unsurprising, I’m sure you’ll agree.

Apart from a few stylistic errors this was quite well written.  To be fair, what I consider errors or inappropriate wording might not have been but instead been the difference between English and American – such as the use of the term “hurt children” to refer to kids with disabilities. In England that would be pretty much unacceptable in that context as it’s not a social model term.  But it’s my understanding that America is much more medical model based so maybe it’s acceptable there.

I find myself somewhat wary of recommending this book because some of the practices Joseph’s parents tried in efforts to help him strike me as naive and at times downright dangerous.  Joseph’s parents showed a lot of people the alternative therapy they’d been shown how to do – including some doctors.  I was very surprised that 1) Joseph didn’t end up injured at any time because of it and 2) nothing happened when they showed the doctors other than them being told to stop wasting their money and time.  But… that said there’s nothing to say that didn’t happen and just didn’t make it into the book.

NOTE: I am deliberately not mentioning any of the therapies used because I don’t condone them as a whole (a few sort of make sense but not when applied in the extreme) and don’t want people coming to my blog looking for info on them.

On the whole I would say this is a very interesting read and it kept me involved the entire time. The love for Joseph shines through the book and the level of dedication shown to him is to be applauded.  I’d say to read this if you want to gain an idea of what it can be like to be a disabled person and especially to be the parent of a disabled child.  I wouldn’t recommend this book if you’re looking to it for treatment options simply because as I said above I personally don’t condone the treatments – although I don’t know enough about them – and all such decisions should be based on more than just anecdotal evidence.

I’m glad I read this book because it made me think a lot and consider a viewpoint very different to what I believe in.  I’ll probably check back on Steve, Joseph and the rest of the family from time to time on their blog because the book made you care what happened to them.

I plan to see if my mum wants to read the book because I’d be interested in her take.  I’d also love to hear what other disabled people and parents of disabled kids think of it.