Friday, 12 December 2014

That news I promised

So, I was asked to wait a little while before letting people know about this but my name and piece have now been published on the Dying Matters website and you can go see it here.  I wasn't one of the three prize winners but am listed with the other 'highly commended' entries and if you click on it you can read my piece.

Dying Matters is a coalition of 30,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.

Back in April I responded to a request from the charity to write about the subject of putting things right - while there is still time.  The idea caught my attention and I wrote a short piece about the SAH and how it had changed me and my relationships with others.  I wasn't sure it exactly fit the brief but emailed it off and promptly forgot about it.

As I said the other day, I am dealing with a lot of family stuff recently.  I seem to be in a period of almost constant hospital appointments right now, my BP is a lot higher than it should be which makes me twitchy and I am trying to get my head around what a veggie gluten ataxia type person can actually eat.  I am exhausted 97% of the time and generally liable to be a bit grumpy.  So I must have missed the first message Dying Matters sent me about the competition and only narrowly avoided deleting the second.  It didn't just give me something to smile about it also did some good to read it again and remind myself where I've come from and all the good I have in my life.

What I must have missed when I entered the competition is the fact there will be an awards ceremony in London, details of which will be sent to me in the new year.  I am both nervous and excited about that.  I may not be one of the prize winners (and so can probably not worry too much about what I decide to wear) but it will be a totally new experience.

So anyway, go read the winners and the other highly commended pieces.  Share them, tell me what you think about them.  Dying matters because we all do it at some point and the more we accept that and talk about it, the more positive an experience all round that could be.

Thursday, 27 November 2014

Closing Time



It's been a while, I should probably bring you up to speed.  I'll go for bullet points, it's easier:

  • My dad has taken up a lot of my time, more than I have to give really.  In the last 2 days I have spent a very long time in A&E with him on two separate occasions.  That meant ending up awake for 24 hours straight from yesterday till around 7am this morning.  No, I have no idea how I am still upright either.  Technically speaking I'm only half upright because I am propped in bed.  Trying to get male carers and nurses to shower him and change his catheter every 12 weeks is proving to be a seemingly impossible task meaning that more and more was falling on me until frankly I was buried.
  • I ended up in hospital for a few days again last month because I was so run down and overwhelmed.  That was really rubbish but I guess I needed the wake up call.
  • In supervision yesterday I realised that I had given up so many things I enjoy doing, like blogging, so it's no wonder I've felt pretty miserable.  So, like the real slim shady, guess whose back?  (But possibly less prejudiced)

  • After all those MRI's where I couldn't hear the music I brought, electric zappings and stabbings to collect blood I have finally been diagnosed with Gluten Ataxia.  Basically gluten attacks my brain and not my gut.  I was expecting to be told I needed to go gluten free but not that I had a disease rather than a sensitivity.  The fact that slipping up at all can cause more damage to my brain that has nothing to do with the post NCF was a bit of a kicker.  Still, as always it seems, Sheffield is one of the best places in the world to have this diagnosis and hopefully the ataxia won't be degenerative as long as I never eat krispy kremes and tiger bread ever again.  OK it is a LOT more work than just cutting those out but the point is I might actually feel progressively better not worse.
  • I heard the new Take That song on the radio a couple of days ago and it has been stuck in my head since.  I think the top 25 most played tracks of 2014 are going to be very poppy this year.  You have been warned...
  • I have some exciting news I want to share but I can't just yet too.....  In the meantime, go check out my vegan tuckbox review.  A lot of the stuff is gluten free so if anyone wants to get me another one feel free :D

Thursday, 10 July 2014

No Music


Six weeks ago my older brother sent me a message to let me know our younger brother wanted to speak to me.  He said my dad was in hospital.

I'd not spoken to either my younger brother or my father for a couple of years.  I'd not seen my Dad in over 20 years.  I knew if he had left the house and agreed to go to hospital it must be serious.  I didn't hesitate to say baby bro could ring me and we talked like no time at all had passed but I wasn't going to rush into agreeing to see my dad.  The situation had totally blindsided me.  I had made the decision to go no contact calmly and made my peace with it.  I haven't been scared of my father for a long time.  I was the same height as him when I saw him last and was no longer physically intimidated.  In the years that have passed I have had some very long and frank conversations with him about exactly what happened during my childhood.  I have told him exactly what I think about his chosen methods of discipline, parenting and how his reaction to my disclosures of abuse made a nightmare situation much worse.

He listened though.  More to the point he apologised.

Three days after he was admitted a nurse rung me and asked if I would come and sit with him.  Petrified as he is of anything medical, hospitals and tests I suppose I should have been surprised it took this long for him to have an almighty anxiety attack.  So I made the decision to go and see him.  I sat in the back of the taxi staring out of the window.  I last saw him when I was 18, angry, seriously flirting with a complete breakdown and so very thin.  Now I was nearly 35, fat, limping and, I realised, calm and collected.

Having found out where his bed was I took a deep breath and walked down the ward.  He spotted me first, it took me a moment to recognise him.  The clean shaven quite stocky man I remembered had been replaced by a frail old man with an impressive mane of hair and a beard.  He has always had very blue eyes and they lit up when he saw me and tried to struggle to his feet to hug me.  We didn't have long before the ambulance arrived to transport him to the other hospital but he asked about me and my family and said over and over how good it was to see me.

Walking next to him to the ambulance he kept looking up from his wheelchair at me and grinning.  I'm not going to lie, it is nice to see someone light up just because you have walked in the room.  I said I'd come back and see him the next day.  I did and have been visiting almost daily since.  Yes it is exhausting and stressful but it has also been good to sit and argue about politics, listen to tales of his youth.  It seems important to him that I understand who he was and is as a person not just a role.

He asked me to take control of pretty much everything from his finances to figuring out where he will be rehoused too.  Yes, I did take some pleasure in pointing out that considering 'the man is the head of the household' it was funny how he wanted me to deal with everything and trusts me implicitly to do the right thing.  He had the grace to look embarrassed.

It has been confusing for my friends and in particular Chris.  They've heard nothing positive about this man, never met him and yet here he is taking up a lot of my time suddenly.  He referred to me the other day as always being a 'faithful daughter'.  I couldn't help but laugh, it was ridiculous.  Among other things I took him to court when I was 15 and blood was drawn deeply on both sides of that particular battle.  I've told him bluntly more than once what I think about his choices and removed myself physically and emotionally every time he has been less than respectful towards him.  "You are here now though" he said.  "I am more vulnerable than I've ever been and I know you won't exploit that."  He is right.  The thought never occurred to me.  More than that, I realised I am not doing this out of duty.  I think it is doing me some good.  I've never had a father before, not really.  It's weird but it's not duty.

Then, a week ago today, I had to call the GP currently overseeing his care to ask her advice because he was feeling sick.  Boo was away on a school trip and I had promised Roo a film and dinner.  So thinking it would be a quick call I rung her.  She is lovely, warm and empathetic and she told me that his blood work was very worrying in fact the level of inflammation could indicate a form of leukemia and she was doing more tests.  When I said I had nursed my grandmother through the final stages of leukemia she dropped all pretence and told me that was her major concern.  In a sort of daze I suggested we not tell my father anything till it was confirmed as his anxiety was already debilitating.  I hung up the phone, called my brother back who was with my dad and reassured them all was well cheerfully.  I emailed Chris and I went to the cinema.

For two hours, in the safety of the dark, tears rolled down my cheeks.  We were finally establishing the kind of paternal relationship I could handle, honest (mostly) and respectful and now he might die?  I told Chris, I told Lin and yesterday when I saw him face to face I told my little brother.  It was necessary to let a couple of other people in on the 'secret' partly for my own sanity and partly practically.

I saw his current GP this morning and she told me that while they would keep monitoring him because his body is still not doing things they understand, his ESR level had halved and the probability of it being leukemia was significantly reduced.  It's been a very long week and an even longer 6 weeks.

I don't have a song for this post.  I don't have a playlist of top 5 positive parenting tracks because this is all new to me.

Monday, 19 May 2014

New Music - Terry Emm

What better way to start a new week than with some new music?

The latest single from Terry Emm fits the bill perfectly, it is out today and is a really beautiful and pop infused song.  The sun is shining so even though it is another Monday morning throw open the windows and play this loud.

As if that wasn't enough to kick start your week, I also caught up with Terry recently for a chat.

We have reviewed your work before here on Adlibbed Terry, but would you mind introducing yourself for anyone not familiar with you and your music?

Well I’m a singer-songwriter from Bedfordshire and have been playing guitar since I was 10 years old and write a variety of stuff under the genres ‘alt-folk’ and ‘pop’ and everything inbetween.

‘Starlight’ the title track of your new album is very gentle like previous singles ‘Gently’ and 'Loved and Never Lost, does the album continue in the same vein?

The bulk of the album I guess you could say is in my usual style but I feel I’ve matured slightly over time in different ways and the production sound varies with a different producer involved. However there are also a few suprises- some more upbeat guitary tracks with organs and piano, with more of a guess you’d say ‘power-pop’ vibe to them. Someone described it as a bit like Tom Petty.

I've read some pieces that compare you to the late Nick Drake, is he a conscious influence on your work?

To begin with, no. I took influence on my solo stuff mainly from people like Mark Kozelek (probably my biggest influence), Neil Halstead, Bonnie Prince Billy, Iron And Wine, John Denver, Neil Young, The Beatles. There was a whole Nick Drake renaissance and everywhere I was playing people who’d say to check him out. It wasn’t what I was expecting at first but then I got really into it and the mysticism of his death and it has influenced me a lot since. The whole story of his life and career has been in some ways a comfort to me with my own personal struggle with the music industry having also grown up in a small village and also playing music that is sensitive and not trad folk but ‘english’ in a certain way. I visited his grave and house once with a friend from University on a little trip. My friend pressed the doorbell and there was some pretty hefty dogs barking and an annoyed looking woman came out so we legged it. That was a nice and pretty amusing day.

What inspired you to become a singer and songwriter?

It was tough to keep bands together at school and as a teenager and never felt anyone else I met was truly into it as much as me, apart from one bass player who moved to America and is in some great bands out there now- then I also started listening to more singer-songwriters and introspective music, so naturally turned inwards and modeled myself on those guys (a lot of them mentioned in the previous question)

You have some gigs coming up in the next couple of months, what do you enjoy most about playing live?

I’ve started to enjoy it recently more as just ‘whatever comes out on stage, comes out’, in terms of stories I might say or things I might do inbetween songs, a bit more ‘off the cuff’, sometimes it works really well and other times you just get the eccentric people laughing about it all with you afterwards. Have enjoyed meeting a lot of people at gigs recently where I used to want to just get away from everyone straight away after I’d played and would skulk about my merch table not making much effort to sell anything. Still don’t sell much though. Haha. Think I’ve matured slightly and my playing is better- the new songs are fresh and the old ones flow out easy like water. So it’s all positive at the moment.

You can pre-order Terry's album, Starlight, here.

Monday, 12 May 2014

Distract Me!

I am having one of those days where I can't settle for long enough to actually accomplish much.  Blogger kindly told me that in the last week a few people had read this post from last year.  It includes the following:

My lovely January girls bought me a pimped up crutch because I keep dropping my stick. That is helping a lot and I am so grateful for them and the crutch. I have to keep on my feet regardless of the pain and the falls because it is around 6 months or so until my next dexa scan. If I stop walking then my bone density will not have recovered and may have even dropped further which will mean life long treatment for that and I'd rather avoid that for as long as possible.

Well it is D for Dexa Day tomorrow.  7 months ago I noted the importance of remaining mobile.  3 months ago I was awarded funded taxis to get the girls to and from school because of the pain and the falls.  At the start of last month I took delivery of a wheelchair after the pain clinic told me not to cut off my nose to spite my face.  I have told myself for the last 2 years not to worry about this result until I get it and for the most part I've managed it.  But now it is tomorrow and I need some major distracting...  For good or ill this always distracts me....

However the realisation it was one of the singles I bought the week of my 18th birthday is just frankly depressing...

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