Blog
Nikki's Story
Nikki from Hove’s routine back surgery left her with a spinal cord injury that almost destroyed her life. A chance internet search led her to SIA and a community of support. Now a volunteer for SIA, Nikki hosts the Brighton community group and uses her experiences to help others.
In 2020, I underwent back surgery that was supposed to improve my sciatica but instead damaged my spinal cord, although I didn’t know it at the time. My life was destroyed with that operation. I was left with incomplete paralysis, a damaged bladder, a damaged bowel, drop foot and saddle numbness. My surgeon refused to accept anything had gone wrong with the operation and wouldn’t send me to a specialist spinal unit because he said I didn’t have spinal damage.
I’m one of the millions that get thrown out of the net. I had to fight for a wheelchair, and I mean fight. I had that fight in me because I had just recently escaped a five-year abusive relationship and recovered from anorexia. It gave me the strength to fight my way.
The surgeon disappeared and I wasn’t given any specialist physiotherapy. I was sent away with some catheters but I didn’t know what I was doing. I was left dealing with it all myself. My family tried, but unless you’ve been through it, you don’t get it. My adult children reacted in different ways, their own coping mechanisms. It was very hard for my parents to know what to do to help me, they found themselves at a loss, especially as they already saw me go through so much previously. For this to happen, it just devastated them.
In 2023 I moved to Worthing, and I got a new doctor who was really helpful and understanding. I got home, typed something into Google, and up popped SIA. How I never found SIA before, I’ve no idea, because I did so much research. I obviously didn’t put the right words in because I didn’t know I had a spinal cord injury, no one had ever explained that to me.
I was very scared about getting in contact, because I’ve been through quite traumatic stuff and my background of abuse and not being believed or heard had made me quite anxious, but also given me a determination to not give up. So I typed my name in.
I had a meeting with my local SIA Support Coordinator, and I thought ‘Oh my god, this is what I’ve been looking for’. Until then, I had never left the house by myself, but I went to my first Community Group meeting. And I was like, ‘this is home. I’ve come home to a place that I can be me without feeling weird.’
Picture: Nikki (fourth from left) at the SIA Brighton Community Group
I’ve always felt like I don’t fit. Having all this stuff going wrong, then no one helping me or understanding me. So I just felt really happy.
Ever since then, I’ve been going to the SIA Community Group in Brighton every month. If it wasn’t for SIA I wouldn’t have made friends. I would have just cocooned myself completely indoors and been so traumatised and upset and still not knowing not to do. SIA has just been amazing, without them I would be in a far worse state than I am.
SIA’s Support Coordinator told me to get my GP to refer me to Stoke Mandeville (the National Spinal Injuries Centre), which he did. They investigated further and realised I’ve got damaged nerves in my spinal cord. I get tingling down my arm and sometimes my grip isn’t very good. Stoke Mandeville have also been sorting out my drop foot, I’m going to collect my boot soon, and I’m with Stoke Mandeville now forever.
I’ve spoken to SIA’s specialist nurse, Mel, about my bladder and bowel and she made me an Essential Care Passport. When I was in hospital having my gallbladder removed, Mel contacted them to tell them how to manage me, but they did not respond. I was stuck in a bed not able to do anything and they didn’t care that I had a spinal cord injury. I could see so many changes that needed to happen. Little tweaks can make a big difference.
I want to use my experiences to help other people. I feel like all my history, the paths I went down, while they weren’t good, they were good to help me navigate life now.
I have days I’m down, tired, exhausted, in pain, but I mentally keep myself doing something so that I don’t drop the bar. Because then up comes the anorexia, and it’s really hard to balance it down. So I keep the bar at the right level. It’s either laugh or cry and I’d rather laugh.
I could see how busy SIA’s South East Support Coordinator Aleks was. I realised his job is too much for one person, trying to go to the hospitals and run the groups. I said he needs someone to run the group for him. I said I want to do it. I’m trying to ask everyone on the list what they want from it; do they want an activity? Do they want to learn about a specific topic or have people to come in and chat to them? I’ve already lined up a hydrotherapist place to come along. I’ve got lot of ideas.
SIA helps people engage in life. It’s really important to help people and also help the families too because they don’t know what they’re doing. Without SIA, we wouldn’t have anything. We wouldn’t know what to do because there’s nowhere to go. You literally are lost. It’s vital, we need it.
SIA’s Support Coordinator Aleks speaks about Nikki’s journey …
I have known Nikki for nearly 18 months, during which time she has proven herself to be a dedicated volunteer within our community group. She consistently demonstrates kindness, reliability, and a genuine commitment to supporting others. Her positive attitude and willingness to help make a valuable contribution to both the group and the wider community. Nikki has embraced her volunteer role wholeheartedly, bringing fresh energy and enthusiasm to our Sussex group, and has quickly become a valued and respected member of the team.