Ian’s Story

Looking back, I can see where my pain journey started.

I had worked for more than twenty years in financial services and travelled all over the world with my family. I’d started at the bottom and worked my way up to Director of the company. It was stressful and there were a lot of restructures going on, which took its toll as I’d known many of the staff for years. What I was being asked to do within my team really hurt and I think this all probably contributed to how I crashed quite dramatically in the end.

It was about fifteen years ago that I started to notice it was taking me longer to recover from colds and I was always tired. I put it down to working too hard but then I started to get anxiety attacks, which I’d never had before. At the time, I didn’t see a connection between my pain and the stress I was under. I saw it as something I just had to get through and I didn’t ask for help. I was hiding the fact that I was getting nervous even going into a small staff briefing.

No one could tell me what was wrong, which messed with my head – was I making this all up?

I got diagnosed with so many different things, which didn’t turn out to be right. I started to get really bad stomach pains and after a couple of years of investigations, I was diagnosed with Coeliac disease. This seemed to explain everything, but even after I changed my diet things didn’t improve. I started to get more and more pain in my ribcage then in my hands.

This went on for years. It made me very anxious and very down.

My wife and my children got on as best they could while I just existed.

My lowest point was about six years ago when I was housebound and needing a wheelchair to get anywhere. I’d given up work and had become effectively housebound. I’d lost my mum after a long battle with dementia, and whilst at the time I thought I’d coped well with it, looking back I don’t think I did. I went on to be diagnosed with Fibromyalgia and arthritis, as well as depression and anxiety. I was here but I wasn’t here inside. For many years I missed birthdays and holidays and school events because I stayed at home with pain. Looking back, it was totally unhelpful but at the time it felt like the right thing to do because I felt like I needed to protect myself.

At the age of 46 I had both my hips replaced.

Again, this pain was treated in isolation from all my other issues. I had the surgery which seemed to help my hip pain but nothing else. Nothing was wrapping it all together. I was just spiralling downwards – nothing seemed to be working. The medication was just piling up and not helping either. I was in constant pain and could see no way out.

It wasn’t until 2019 when attending the NHS Bath Centre for Pain Services on a 4-week residential programme that I started to see a way through all of it.

I was grieving for my old life, as well as for my mum.

One major thing I dealt with was grief. Another thing was an understanding that I could do stuff and it wouldn’t make things worse. I had been curled up in a ball knowing that every time I moved it hurt – so I stopped moving. Once I realised I could move and understood how it worked, it opened up a whole new life for me. of it.

I wanted to be a part of my family again.

While I was in Bath, they asked me what I wanted. I felt like I’d lost my role and my pride. I started to unpick what it was that I used to enjoy doing and that’s when cooking came in. I’ve always loved to cook and I’d completely lost that desire for many years. I wanted to give it a try again for my family to see me being present and having a go at something.

Something else I began to understand better were emotions. I started to understand how I was feeling but also how other people were feeling. I’d become very insular with my pain and I didn’t realise the impact this was having on my family. It was a horrible thing to wake up to, but I realised that it wasn’t just me suffering.

I’m a different me now and it’s mostly for the better.

After the pain programme, it wasn’t that my pain had suddenly got better but mentally I was so much more free. I felt able to deal with the pain rather than curling into a ball and going to sleep.

My family know what my strategies are too so my pain becomes part of everyone’s day. It connects us now, rather than being a barrier. It was really difficult, but the experience has changed me from being totally work-focused to being a husband and a dad first. I don’t describe myself as recovered ,I’m in pain today – but I’m not a sufferer. I have the same number of pain flares and frequency as before, in fact sometimes more because I’m doing more stuff, but I’m able to take a step back and look at whether what I’m doing is beneficial for me. Now when I’m more mentally agile and I’m playing with the dog or cooking food, the pain hasn’t gone away but I deal with it better.

If I was having my time again, I’d ask a lot more questions before having surgery.

I felt so fragile at the time and I just wanted someone to fix me. The surgery has helped, I have less pain in the evenings, but now I know what I know about pain, maybe I could have achieved that anyway. The same goes for medication, I’d ask more questions to understand my options. I still take some medication for pain but nowhere near as much as I used to. The more I took though, the more I needed. I went through a period of slurring my speech where I was like a zombie. My pain programme gave me the confidence to question whether my medications were really helping me.

I came down from the really strong stuff over a couple of years and my pain didn’t increase. It was a hell of a thing realising they weren’t helping me anymore. The fog lifted and I was awake all day which helped with my pain too.

I didn’t think I’d be bobbing about in the sea with my children again but I am.

I use visuals a lot. One is of a beach with four towels laid out for my wife and two daughters. A few years ago, that fourth towel would have been empty but now I’m on it! On my bad days, I visualise those four towels. We adapt on holidays now and meet in the middle if there are things I can’t do as much of. Everyone’s just so happy I’m there, including me, that we just enjoy the fact that it’s a holiday and we’re all together.

Download Ian’s story here