We had moved house about five weeks before, and I had a bad back that I assumed was from a difficult pregnancy and the house move. The pain became so severe that I went to my GP, but she wasn’t concerned and dismissed it. I was sent home with a prescription and told to self-refer for physiotherapy.

The night before my daughter’s first birthday party, I couldn’t sleep from the pain. I had started to lose feeling on the outside of my foot. I managed to get an appointment with an osteopath the next morning, because I knew there was no way I would get through the party without some help. In hindsight, that treatment made things worse. What had been a single leg sciatica-like pain became bilateral by the time I came out, and I was on crutches.

I called a cab and by the time I got home, I had no feeling in my legs. I could still walk, but I had no sensation. It was the strangest feeling and very hard to explain. I climbed the stairs to my flat, willing myself and my legs to make it to the top. Once I was inside, we called 111. They sent an ambulance straight away. I was taken to the trauma centre at Charing Cross Hospital. I had an MRI and went for emergency surgery almost immediately. I didn’t have time to take off my clothes, never mind process what was happening.

It happened on 29th February, just before Covid and lockdown really hit. I was only in hospital for a week, despite barely being able to walk and being unable to empty my bladder independently after the surgery. It became obvious they were trying to free up beds because of Covid, but I wasn’t getting better. I had been told I would have rehab at a Spinal Injury Centre, but due to Covid I was discharged home and had to wait 13 months before I was eventually admitted to Stanmore.

I was at Stanmore for over a month, and it was an amazing experience. After being on my own for those 13 months, being made to feel that I should just go back to ‘normal’ while dealing with all the spinal cord injury issues - bowel, bladder, pain, fatigue - I didn’t want to leave. There, I finally felt seen and understood… like I did speaking to Aspire.

Aspire’s Welfare Benefits service and their advice was a lifesaver. Despite my difficulties, I am prone to positive thinking and always try to talk myself into a better position than I am actually in. That does not help, because it takes away from the day-to-day reality of living with a spinal cord injury. I work as hard as I possibly can and I’m an SIA ambassador, but behind the trips to Downing Street and the highlights, I have so much pain and fatigue.

To have the Welfare Benefits team, who know how to demonstrate the daily struggles of people in my position in the way it needs to be heard and understood by the DWP, is truly invaluable. It is especially important for people like me who have CES and can walk. Being able to walk makes things complicated, and it is often harder to access the support we need.

To lose everything, my ability to earn and provide, as well as the function of my body, is an awful lot. Adjusting to all of that and then having to make claims makes an already challenging time even more stressful.  My fatigue is one of my biggest challenges, and when I am confronted with a PIP form of 40 pages, it is massive overwhelming before I have to even start thinking about how to explain my situation. That is where the service really helped. I didn’t have to overexplain or justify myself because Aspire have the Spinal Cord Injury knowledge and work with so many people like me.

The form fills me with absolute dread and anxiety each time. To have the support of Aspire and the Welfare Benefits team when facing that process is invaluable. The service takes a huge amount of stress away. I cannot express enough how much of a difference it made when Michelle completed those forms. It feels impossible to do it when dealing with such pain and fatigue. If this service didn’t exist, if this level of support was not offered, there would be so many people who are entitled to PIP but simply cannot face it and then do not get the support they need and are entitled to.

I have always been in employment, and one of my biggest frustrations with this injury is the impact on my ability to earn. Even with all the will in the world, I struggle and have not been able to reposition myself financially. PIP helps to cover some of that gap and helps with the additional expenses I did not have prior to my injury. I cannot use public transport so I have to drive or get cabs to go anywhere.

This service is vital to people living with Spinal Cord Injury. I am so grateful for the support.

(Zoe)

Aspire would like to thank City Bridge Foundation for funding our Welfare Benefits Advice Service in London.

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