Hi Martin for those who don’t already know, or didn’t see on the BBC, could you describe a little about who you are and what your life was like prior to Cauda Equina Syndrome?
Hi everyone! I am a 39 year old, for whom previously life revolved around training in the gym and competing in Powerlifting. Powerlifting is a combination of three lifts where the aim is to lift the most weight possible. I had been competing for 10 years, won my first British Championships in 2009, first European Championships in 2014 and then World Championships in 2017. I was unbeaten internationally in my weight class from 2014-2017 and broke numerous British, European, and World records.
I have worked in the Fitness Industry since 2004, doing various things from sales and marketing to fitness instructing and personal training. I am now a Fitness & Wellbeing Manager and look after 20 clubs across my region.
Fitness and weight training were the centre of my world! I was proud of my achievements and full of self-confidence as a result.
I’ve seen the pictures, it looks incredibly impressive! I’m so sorry things changed for you. So when did you have Cauda Equina compression?
It happened in December 2017 just before Christmas.
Do you mind if I ask how did it happen?
It was the Saturday before Christmas, I had gone to the gym for a training session just like most days, planning on doing all my Christmas shopping afterwards. That day I was performing deadlifts (lifting a weight from the floor) when my foot slipped mid lift and I collapsed onto the floor, not being able to move or feel my legs.
Goodness, that sounds so painful. How would you describe what Cauda Equina compression feels like?
It’s hard to put into words the feeling it gives. At the time I was ignorant to what had happened, I just couldn’t move my legs and everything seemed strange. After a while my movement came back and I felt a rush of pins and needles, like if you fall asleep on your arm, from my waist down. This was accompanied by the worst pain I have ever felt.
I don’t consider myself to be ‘soft’ – I was no stranger to injury. I have torn various muscles on a number of occasions when competing, had major knee surgery, yet always managed to return to lifting, but this was pain on a whole different level. It was relentless and continued to get worse over a period of three days until it was completely unbearable.
During this time my bowels and bladder had gone into retention, so were expanding and extremely difficult to try to empty. I remember trying to stack magazines up in the bathroom to raise my knees to help with no success. My stomach was extremely bloated and this was extremely uncomfortable.
So how did it change your life?
I don’t know where to start! It has torn it to pieces in all honesty. I came out of hospital and couldn’t walk due to the loss of movement, feeling and balance in my legs. I had extremely impaired bowel and bladder function, had incontinence issues, and was unable to dress or clean myself. I felt like I was 100 years old rather than the fit and healthy 37-year old athlete I had been before it.
My partner had to help me through those first few weeks as I learned to adapt to being disabled. To begin with I think shock takes over and you just do the best you can. I had nights of breakdowns as I woke up and had lost control of my bowels or bladder. It was absolutely devastating as a man my age to have my partner care for me in that way. It felt humiliating and stripped me of my previous confidence. Add to that complete loss of sexual feeling and function and I felt a failure as man in a new relationship.
I relied on a wheelchair for a number of months to allow me to leave the house, but it allowed me to access swimming pools to learn to balance again and try to walk. From there I started using crutches and a walking stick as things progressed. I think I’m lucky to know some good physiotherapists who helped me and I had access to shallow pools and a pool hoist to get me out of my chair and into the pool through my work.
Strangely as I got back on my feet and people believed I was getting better my ability to cope actually deteriorated. The realisation that I was never going to be normal again sank in and I became more depressed and hopeless. I had counselling for a number of months to help me come to terms with things. Eventually as I started accepting life was never going to be normal again I had bouts of self harm and in November 2018 came extremely close to suicide.
Since then I continue to seek support both physically and mentally, while trying to change my expectation of what I am capable of and remain content. Possibly the hardest part of it now is the lack of understanding from other people of why I am not able to participate in social events, why I am tired all the time, why I decline invitations. Living with a hidden disability and in constant pain is both frustrating and draining.
Thank you for being so candid about your experience it’s important that people going through those issues currently understand that they are not alone. What do you think your experience with Cauda Equina Syndrome has taught you?
It has really opened my eyes to a number of things actually. Firstly that to get help from the medical profession you need to demand it. Secondly it has shown me how difficult life can be with restricted mobility, especially for those reliant on a wheelchair. It also taught me that the public can’t comprehend someone in a wheelchair who can still move his or her legs – not everyone is completely paralysed!
On a more positive note it has shown me how supportive people can be, you quickly learn who is there for you when facing these challenges. I had people who worked for me help me dress after I’d been in the pool, letters and gifts from people, plus countless messages of support. It also teaches you that not everyone will be there for you and to appreciate those who are.
I’m still learning as I go. I haven’t got it all figured out just yet, but I’m getting better at it. Adaptation and adjusting is a long process and I’m still trying to figure out how to move forward and have hope in my new life.
What advice would you give to others who are going through Cauda Equina compression?
Seek help and don’t take no for an answer. Any sign of red flags must be taken seriously and if needed surgery must happen immediately to increase your chance of recovery.
Secondly get as much help as possible post surgery. Do not rely on the surgeon or consultant to help you at all in coping with your new life. Ask your GP for a referral to the continence team, counsellor, a spinal physiotherapist, urologist, neurologist, and pain management clinics. You need to explore all possible solutions to any issues you have, both physically with movement, sexual function, bowels and bladder, but also mentally coping with pain, the trauma, and changing your expectation of life.
You make very good points there that I personally wish I had known too. Is there anything you wish was done differently in your care?
I wish I had been scanned and operated on the day it happened. I was sent home from accident and emergency without an MRI scan or diagnosis. That could have changed my life completely with a better chance of recovery.
Further to this I wish I had been informed how serious the consequences were. If I had then I wouldn’t have accepted my release from the hospital the first time.
Even on the second visit after being diagnosed with suspected CES I had to wait 5 ½ hours for an ambulance to transfer me to another hospital, which delayed my surgery to the next day.
It’s hard not to be angry at the care I received when I look back now knowing how critical time is when dealing with CES.
I can understand that. It’s so important that we deal with those emotions post discharge and not try to suppress them, as many of us do. This is why our residential for CES patients post diagnosis will be so useful both physiologically and physically. So can I ask what is your life like now?
My life it totally different now. I’m lucky I have the support of my partner, close friends and family. If it wasn’t for them I would have most likely not survived the last 18 months.
I lost my biggest passion in life not being able to train or lift again. It’s hard to let go of something that you built your life around and defined you as a person. My work, social life and friend circle, were all based around lifting.
I try to take life slower and not let myself get so frustrated at my lack of ability or fatigue from the pain levels. I am trying to find new hobbies and passion that I am capable of partaking in to fill the void that has been left.
You sound to have a good support network there. You do a lot of fundraising and help awareness for both Cauda Equina Syndrome and mental health, do you feel that Cauda Equina Syndrome has affected your mental health?
Yes! Possibly the hardest part of dealing with the effects of CES has been the mental side of it. Physically it’s hard, pain isn’t easy to deal with and it limits what we can do. The effect of this on the mind however is huge and more damaging. It takes a long time and a lot of work to get your head around what has happened and how much it will affect your life. I am in that process but I still have a long way to go.
Over the last two years I have experienced a vast range of emotions, strangely when I began walking again was when my mental health deteriorated the most. Possibly because people believed I was “better” because I was out of my wheelchair more, so people were congratulating me on my recovery. It was also the same time I had started to accept that I was never going to recover and be the person I once was. This made it difficult to cope with and ultimately led to me becoming very close to suicide.
I will continue to spend what time I can to help others in similar situations, either with CES or those struggling with poor mental health, as I have experienced how difficult life can be.
I can totally empathise with those feelings, I think you are incredibly brave and wonderful to share your painful experiences for the good of others.
You are an absolute inspiration to all of those who know you and we are very lucky to have you championing Cauda Equina Syndrome. Thank you.
It’s my pleasure, I don’t know how I would have coped without the support I gained from the CESA after my accident. The community saved my life, so thank you!
Martin was interviewed by our Blogger Catrina Farnell – Thanks for doing a great job Catrina!