“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!

The drugs don’t work… or do they…?

After the surgery I was put on various different medications.  I was popping pills like nobodies business!  It seemed that every time I saw the doctor he prescribed either more tablets of higher dosages.  When I was referred to the pain clinic the dosages went up even higher.  At the peak I was taking:

• Gabapentin (2400mg a day)
• Tramadol (400mg a day)
• Diclofenac Sodium (150mg a day)
• Amitriptyline (100mg a day)
• And good old faithful Paracetamol(!) (4000mg a day)

At it’s height, the level of pain relief I was on received acclaim from medical professionals whenever I told them the drugs and the dosage it was met with (firstly) disbelief and then, when they realised I wasn’t joking, shock.  I’m no medic but at first when I swallowed the tablets I was kind of worried about it.  At some times when the drugs were going up I had to take up to 18 tablets at a time, I prided myself on doing this all in one go…

…I’m a man, I have to make it a challenge!

All joking aside this level of pain management came at a cost.  The side effects were unreal, when I read the side effect info in the tablet boxes I was able to say “…got that; got that; got that…” It was not unlike collecting the football cards I used to trade on the playground at school – although I wasn’t saying “…need that; need that; need that…”!  The effects of the drugs helped manage the pain, although I would still have pain every day (and still do) but the side effects were shutting me down.  The biggest culprit was and, to a lesser extent now, is the Gabapentin.  The drug was formulated to treat Epilepsy and does it by suppressing all the nerves in your body, including the brain – which is why it is so effective for treating Epileptics.  However this meant that I was unable to interact fully when things were going on.  I would forget what I was saying when mid sentence and when in group conversation by the time I had processed what someone was saying and thought about a response the conversation had moved on and I had missed my opportunity.  This was utterly frustrating and meant that I gave up trying to be involved in conversations.  It felt like I was mentally walking through tar, it was hard work and I wasn’t getting anywhere quickly.  Added to this the effects from the tablets were unreal, some of the side effects I had included;

…drowsiness, tiredness, dizziness, headache, anxiety, memory problems, diarrhoea, constipation (!), dry mouth, weight gain and (get this) back or joint pain – unbelievable, I was taking the bloody things to get rid of back pain not to have more! (I don’t say this to impress, I’m putting this info here to help tell the story).

One of the biggest issues I had with the tablets was memory loss.  When the doses change I have the tendency to completely forget something that is said or that happens.  It’s quite useful if I don’t want to do the washing up, more challenging when I miss appointments for important scans or when in the workplace.

There is also a massive issue if I ever forget to take a dose or run out completely.  Withdrawal from some of these tablets is incredible, i ache all over, my lungs feel like lead weights, my head spins and I am unable to concentrate on anything.

The struggle with drugs is one that I have done battle with over the years. 4 years ago I decided that enough was enough, my quality of life was poor and I still had pain.  I spoke to my GP and we decided that I would try to reduce the medication I was taking.  I was scared at this prospect, I depended on these pills to keep pain at bay and choosing to reduce the medication filled me with anxiety.  However, I had made up my mind so I started to reduce the tablets.  I started with the Gabapentin, slowly we reduced the drugs, over the course of a month I had reduced the medication by 100mg, and I noticed a difference straight away.  2 days after beginning the process someone commented that it was like Jonny was back in the room.  This was all the encouragement I needed, so I persevered and reduced the tablets.  The side effects came to challenge but I wasn’t backing down.  I had become a slave to these little white pills and I was determined to reduce them as far as I possibly could.

Now, 4 years on, I have reduced the medication by over half. My daily doses are;

• Gabapentin (900mg a day)
• Tramadol (200mg a day)
• Diclofenac Sodium (0mg a day)
• Amitriptyline (100mg a day)
• Paracetamol (2000mg a day)

I have more pain but I’d have that rather than live the half-life I lived for nearly 4 years.  It’s a battle and I have to deal with pain daily but I don’t want people thinking that I am anything special for dealing with it, after all, it’s all relative.  Yesterday I had pain and today I have pain and this is how it has been for the past 8 years.  Some people deal with different shit each day they have no food, shelter, love and they are on my doorstep as well as in other parts of this world. I’m fortunate compared to them and I want to love and support them in the same way I have been helped.  I am also lucky because I have amazing, positive and generous people all around me, the support and love I have had and still have humbles me every day.

I’m nothing special, feel free to remind me of that if I ever forget!