Walking in the wind

I am a dog owner (see picture below) and this particular dog brings many joys to my life.

Walking in the wind and rain isn’t one of them.

I’m sure you understand that.  Today was one of those walks, we put it off hoping the wind would ease and the rain clouds empty.  Alas they didn’t so we togged up in thermals, layers and waterproofs and took him.

As we walked round the park there was little point in trying to converse, we had to put our heads down and face the wind.  I regretted going to the gym for the first time in 3 weeks after about 3 minutes of leaving the car.  Rain lashed down, vicious and biting winds slowed us and we struggled round.

It reminded me of my life’s journey these last few years, particularly these past few weeks where I have struggled with much more serious pain in my back.  Sometimes there is little point trying to talk about it, I just have to put my head down and face it.

It’s not easy when pain dominates your life, I have learned in the past 8 years to diminish it’s effect on me and I got to a point where I could pretty well ignore it.  Even though I have pain every day I was able to not let it affect me, like the proverbial water on a ducks back.  The past week particularly has been the worst I have had for a long while, being woken in the night flinching with pain shockwaves in my back and having times throughout the day where I am effectively paralysed with pain are never good times but that’s the reality I’m currently living with.  Somedays are worse than others but this past week has been draining.

I have booked to see my GP on Friday as the pain has worsened so dramatically over the Christmas break, I’m hesitantly  considering increasing my medication.  This would feel like a backward step, maybe a necessary one but backward nonetheless.  I have worked so hard in the past 4 years to reduce my medication so to increase it goes against that flow.  This is not a decision I take lightly, side effects would reappear to some extent and my mind could become more clouded and dull, “…is it worth it?” is the million dollar question!

I’ll say it again, I don’t write posts like these to get any sort of pity or to impress anyone.  I write this to be honest with you.  All too often we don’t tell people how we really feel.

My stock response to the ‘how are you?’ question used to be “OK thanks, how are you?”

Often that was’t the truth and I didn’t really want you to answer honestly as that would have been awkward, especially if you’d said

“…life’s a bit shitty at the moment, thanks for asking!”

I write these posts for myself, just to vent a little and get it out of my system.  Honesty can be a tough experience but can be incredibly valuable.  A bit like walking in the wind.  One of our best friends recently went out and enjoyed some stormy weather in Malham and found it incredibly liberating.  That’s just such a prophetic image to me, letting the storm batter and beat you and just being able to stand there and enjoy it.  There’s a lot of treasure to be found when we face the storm and push through the different barriers it presents.

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!