Where I’m Up To…

Hi there again, thanks for checking in with me.

Probably not got a lot to say other than another update with where I am up to and a brief taste of where I plan to be in the near future…

This week I am having a break from the reduction process, mainly because I want to enjoy the upcoming ‘Wed-Fest’ over this bank holiday weekend in Scotland.  So, as far as the reduction goes, I am currently at 50% with the Amitriptyline and at 33% with my Gabapentin reductions.  With no increase of pain and massive sense of my head space being cleared and having freedom from fogginess!  All I can say is how much I now value clarity of mind – I can’t really believe how I had been living and operating without the clarity I have now, and I still have a long way to go with my reductions.  I haven’t even thought about reducing the Tramadol yet so whatever effect hat is having on my body I will surley notice when that reduction process is underway.

My plan for the future is coming into view now.  I am looking to the end of August (9 years since the first operation) as the point where I hope to be clear of all medication and back to as close to ‘full strength’ as possible.  I start physiotherapy on Wednesday so that will help me with starting the journey of re-strengthening the muscles in my back and building my fitness levels back up.  I hope that this time frame is not too ambitious but I do believe that if you don’t set a target there’s nothing to aim for and that motivation is a challenging thing to find for a vague goal!!!

All in all, I have surpassed many of the goals I had set by a long way.  The only thing that has been more difficult than planned is the withdrawal process.  This massive challenge I have had to face has also halted my physical recovery somewhat as, when I am struggling through the symptoms, my energy levels are no where near enough to be up and about and building my stamina and fitness back up.

So the medication reduction journey will be continued as of next Tuesday, and the plan is that I will, hopefully, be off all my neuropathic medication by the end of May.  I can’t wait for that.  My doctor has given me a sick note for work that will run out on the 23rd May.  Hopefully that will be when I can restart work but that is not guaranteed, it’s all dependant on how I get on with the drug reduction process.

Fun times ahead!  I’ve got to say that joining Love Film was well worth it as the opportunity to watch movies when I’m feeling particularly rough is very much appreciated!

Till the next time – have fun and enjoy life, I will certainly be trying to that without any withdrawals!!!

A Quick Update

Ok, 6 days since the last update and not much has happened regarding the upcoming surgery. Kirsty, the N.S. secretary has been off ill for a couple of days (meaning there was a further delay) but has told me that she will call me as soon as she has typed up the notes from the N.S. – so we’re still waiting, getting good at it now!

In other News, I’m not in work today due to increased pain overnight that hasn’t shifted. This is draining and I’m hopeful that it have shifted by tomorrow. Any positive thoughts/prayers welcome for this!

Thanks for following this blog – it means a huge amount to us that so many people are concerned enough to follow the journey we are on.

“Hi Ho – off to work I go…”

Well the first paid job I undertook, after 3 years of wilderness, was working as a learning mentor for a FE college in Leeds.  There were a number of young people who were coming to the college on placement from schools as they were behaviourally challenged and the schools were after babysitters for them.

I could only do part time work, 25 hours a week, and this hasn’t changed to this day, however I only did this job for one school term and then an opportunity I couldn’t resist came along…

Before I was signed off work I had started working for one of 3 or 4 multi-agency teams, based in school clusters.  The teams worked in one local high school and their cluster of ‘feeder’ primaries.  The one I was working for before the kerfuffle of pain and tumour was in the south of Leeds and now an opportunity presented itself and I was able to join the team in the west.  I started working alongside the sorts of young people that had been sent to the college placements with some incredibly talented, resourceful and caring colleagues.  At that time on the team we had a; Social Worker, Mental Health Professional (CAMHS), Youth Worker, School Exclusion Cover Team for both Primary and Secondary schools), Learning Mentor and others I have forgotten.  The work we were able to do ranged from case to case and we were able to support vulnerable young people and their families as they went through the struggle of schooling when facing incredible social and domestic challenges.

We worked with the kids that teachers understandably wanted out of their class as they lacked some the basic social and academic skills required to engage with learning.  A common student case we worked with would have been;

Jimmy – Year 10 (14/15 years old).

Reading age:

7 years

Domestic life:

• No father (in jail for domestic violence which Jimmy witnessed)
• Mother is a drug addict
• 4 siblings (from different fathers)
• older sister (16 years old) pregnant
• older brother permanently excluded from school
• 2 younger siblings.

School Life;

Excluded for fighting with other students, verbally abusing teachers, over sexualised and inappropriate behaviour, says he doesn’t care what happens to him.

Aspirations:

Either non-existent or Drug Dealer

Agencies involved:

• Social Care
• Youth Offending Team involved

This really isn’t an exaggeration, yes this might have been one of the more complex cases but we would regularly be working with children living in these situations.

Completely challenging but a real privilege to be able to support in some small way.

Within the first week of this job I was put on a training course telling me how to deliver a Parenting Course!

“…me, teaching Parenting? I don’t even have kids, how could I do that…?”

Nevertheless I did the training and started to deliver within the first month of being there. Flip this was a challenge! The closest thing to parenting I had ever done was looking after a dog and babysitting my niece and nephew for one weekend!  However the beauty of this course was that I didn’t teach parenting, we structured discussion and activities to either draw parenting principles out or look at psychological evidence for particular approaches and the look at how they could be applied in the context of the families we were working with.  Unbelievably it worked!  The parents would mostly come back week after week telling stories of success and, unless there had been external influences, barriers that could be overcome through brainstorming strategies to help achieve the next small step to success.

This was incredible, an amazing privilege and I was able to apply the same basic principles to the way I worked with young people.  For example Jimmy (described above) would come to a group of about 8 other challenging students in his year group and me and an incredible Youth Worker called Jane and do some work for us when they would refuse in any other setting.  By using simple things like specific praise when he did anything right, ignoring some of his unwanted behaviours that other teachers couldn’t ignore (e.g. one kid would come any lesson and ‘eff’ and ‘jeff’  about not doing any work and, as soon as he looked like he was going to engage with some work, we would praise his positive behaviour massively.

“Jimmy, I really appreciate that you have picked your pen up, you’re the first person ready to start and that shows me that you respect me and that makes me happy!” (believe it or not this was also coupled with a ‘Sponge Bob Square Pants’ sticker!)

After a while I noticed that my outlook on life had changed, I forgot that my pain controlled who I was and made sure that the pain and the drugs were controlled by my decisions and, as tough as it was, I was back, maybe I was 60% back, but that was 59% better than it was.  Working , with all the challenges I had to overcome, had made me remember who I was and my identity was now defined by the positive things in my life and that was the start of looking for a better future!