7th Sept 2017 I had my first emergency surgery after being paralysed waist down from a herniated disc. This didn’t improve things much, so 5 days later I had another surgery, this time to remove the blood clot compressing the cauda equina again, in the same spot. The result was that I could just about bend my knees and barely lift a straight leg off the bed, both left and right were the same.
I remember trying to stand and fainting, being showered and fainting twice and coming round half in the corridor and half in the shower room with seven people around me as I’d been unresponsive for quite some time.
I spent 3 weeks in that hospital, and it seemed like hell
I was provided a wheelchair and started to come to terms with spending 10 minutes planning how I was going to get it into position and transfer into it.
I was soon transferred to a rehab facility where I spent a further 12 weeks. It should have been 6 but time assessing me, checking the sores I’d developed on my thighs, then numerous pains and a bad infection, all resulted in delays to the start of the program.
I consider myself extremely lucky to have had this time in rehab as I know not everyone does. I had regular physiotherapy, hydrotherapy, occupational therapy on how to cope at home, wheelchair skills training, use of an active user wheelchair and patient education on anatomy of the spine, diet, driving again and help to return to work
Mentally it was difficult and there was all that time to think about everything. I became very self-focused, depressed and angry at times to the point that I don’t know how my very supportive wife, Emma, and the rest of my family put up with it.
Finances also became a worry as I knew my salary would reduce the longer I was off sick and that my sick pay would eventually stop, although my employer had permanent disability insurance that could have kept me on 60% salary. However, being the main earner and contemplating that reduction to 60% just added to the worry and it made me determined to get back to work before that happened.
I’d been told about Access To Work and how they helped fund adaptations in the workplace.
I left rehab on 20th Dec, with a wheelchair, only able to walk 10m with a walking frame, still in a lot of pain, not sleeping well, catheterising, the list goes on…
After a month of being house bound and not able to use the wheelchair in the house or outside(I live on a hill and the pavements aren’t great), I talked to work about returning at the end of Jan on a phased return, they suggested starting with an hour, a couple of days a week if I wanted. I had worked in various roles within the company for nearly 27 years and my colleagues were also my friends. It was an office role in Procurement but have since moved to Production Planning.
I had visited there whilst still in rehab with the Occupational Therapist to look at what adaptations might be needed. As it was mainly open plan and there was a ramp to the front door and a disabled toilet there wasn’t much that needed changing. I was allocated a parking space next to the door, a key code was put on the toilet and I had a sit to stand desk (as part of a complete office refurb, so not just me).
Having contacted Access To Work, they explained what I needed to do to apply for transport funding. This enabled me to get taxi’s to and from work and they covered the cost minus what it would have cost me to drive my own car there.
Time passed surprisingly quickly, and I found that at the end of Jan I still wasn’t ready, mentally or physically so I delayed the return by two weeks, during which time I prepared myself better. I had decided to do a full week at 4hrs a day.
My first day back at work did feel strange. You wonder if people will treat you differently and think you can’t do things because you now have wheels but then there was also the worry of being expected to do too much and in my mind not knowing if I could handle it. The factory manager broke the ice by coming over to my desk and announcing to everyone “Paul’s here, it’s good to have him back but don’t treat him any better than you would have done before”. We all had a laugh and I got on with catching up on 6 months missed work. I didn’t get extra special treatment, I worked back my time for weekly, and then twice weekly, physiotherapy appointments. I increased my hours gradually each week to 5, 6, 7hrs and on week 6 went to full 8hr days.
Once I had a car with hand controls to drive, it made life easier and meant I could be more flexible. I also pushed myself to do a couple of supplier visits by myself, one being 250 miles away and was my first trip anywhere on my own since surgery. I wanted to prove I could still be independent.
Even when laying in bed in hospital I always thought I would carry on life as normal with just finding different ways to accommodate the disability. What I hadn’t counted on was the numerous pains every day, the sitting on a ball sensation, burning nerve pain particularly in my feet, muscle spasms, other general aches and on top of all that add chronic fatigue and poor sleep.
One of my beliefs is that distraction is sometimes the best pain relief and work is certainly a distraction. There has only been a couple of times when the muscle spasms have worn me out to the point I’ve had to leave an hour or so early. I expected that I would be having lots of sick days and become a liability but I’ve found just the opposite. I’d always had a very good sickness record, no days off in 7 years but then 6 months off with CES. In the 30 months I’ve been back I’ve had a week off when a bad lower back muscle spasm scared the life out of me and sent anxiety through the roof and 1 day off with a 24hr bug.
Fitting gym sessions around work was difficult and has become impossible lately due to fatigue. I would go to the gym at 6am for an hour then go to work but would find that by the time I got home I was often straight off to bed, another poor night’s sleep and do it all again.
There’s a balance you have to find and I don’t think I’m quite there yet. I do feel that the combination of work and fatigue has held back my physical recovery but on the plus side I still have daily interaction with friends/colleagues. The next step to me finding the correct balance(for now), after consultation with my Pain Management Clinic and their Occupational Health, is that they are recommending I work from home to give me a better quality of life. Strangely the current COVID-19 situation has now seen me working from home for the last 6 months, I can see positive physical and mental benefits and work hasn’t suffered. I had my 49th birthday in rehab, that was nearly 3 years ago. I count myself incredibly lucky to have been able to return to work and that it isn’t a physical role. It’s by no means easy but I will persevere every day to be the person I was before.” – Paul Bickley
Paul, We think you are inspirational and thank you so much for sharing your story – it is humbling and inspiring. Good luck for the future – Love Cauda Equina Champions Charity x