I was injured on 20^th August 1986, at the age of 21, when I was thrown off the back of my boyfriend’s motorbike when a car pulled out on us and I sustained an unstable fracture dislocation at T12/L1.

My injury had a huge impact on my life, particularly at the start, as being treated in a General Hospital, I had no peer support or patient education and no support was available for my family.  The nursing staff were not trained in the needs of Spinal Cord Injury and therefore could not advise me or indeed give me the nursing care that I would have received in a Spinal Injury Centre (SIC).  I was discharged five and a half weeks later without proper follow up or advice on things such as skin care, bowel and bladder care or pain management, all of which I would have learnt in an SIC.  I was gradually able to walk slowly with aids and had some neurological damage to bladder and bowels. All of which did affect my confidence and I found it hard to accept what had happened. 

Over time I did go on to work, marry and have four wonderful sons.  I kept up with swimming and walking as much as I could but about six years ago, my walking deteriorated so I went onto the internet to see if there was any information about ageing with a spinal cord injury and I was amazed to find that there were organisations that existed to help and support spinal injured people.  After talking to Aspire, Back Up and SIA, I  was advised to contact my GP and ask to be referred to a Spinal Injury Centre which I duly did and finally had rehabilitation and patient education, 30 years after my original accident!  I am now under lifetime care of Oswestry and this has given me the confidence to try so much more and know that so many things are possible, just maybe done in a different way.  I have gone onto do things such as abseiling, outdoor swimming, triathlon and now work for Aspire as an Independent Living Advisor (ILA). Spinal Cord Injury has changed my life, and for a long time made me feel less of a person and although I made as much of my life as I could, now knowing there is the support out there has given me the confidence to do so much more of what I want to do.

I have been an ILA for a year now. I love meeting people and every day is different.  Not having any support or knowledge after my spinal cord injury, I know how invaluable this can be to newly injured patients and sometimes just having someone there to chat to who understands a little bit of what you are going through.  It’s always a lovely feeling to think that you may have helped someone in some small way.  During lockdown I have really missed the social interaction, routine and using my brain!

Due to the restrictions imposed on the Spinal Injury Centres by Covid-19, I was furloughed from my role as an Independent Living Advisor and have spent the last few months at home.  I self-isolated for 12 weeks as I also work in a school and so was considered high risk.  This was frustrating as I was in the process of buying a more suitable property and that has been put on hold for a little while.  It has also been challenging, as I am a shuffling ‘walker’ and use a walking frame around the house.  Because I am spending more time at home, and as the house is not particularly wheelchair friendly, it has caused me a lot more pain due to using the walker more than the chair.

I have managed to keep busy with baking, marzipan modelling, reading and have also taken up drawing and painting.  I am fortunate that I have been able to continue to exercise at home too.  I have definitely spent more time talking to my friends (rather than texting) but I am very much looking forward to lockdown being over!  Obviously, it is an uncertain time but to get back to some normality and being able to get out and about will have a positive effect on both my mental and physical health.  I am so looking forward to meeting friends and family, visiting National Trust properties, going out for meals and moving forward with the plans that I had put on hold.

I have recently returned to work remotely, which has been great but very different as I cannot go into Oswestry.  This has meant talking to patients vie email or telephone calls and we have also tried video calling too.  It has been an interesting time as I have had to look at other ways of connecting with patients now that I am no longer able to see them face to face.  Talking through Microsoft Teams remotely is good, and it’s also about looking at ways of letting patients know we are here and finding new ways of engaging with them.

The conversations I am having now are different to those previously; most people talk about the routine in hospital and Covid, although for the newly injured who have not had experience of a Spinal Injury Centre before they may not notice how different it is.  Once engaging with the patients, I am finding they still want to talk about the usual queries, benefits, PIP, housing, adaptations, compensation, etc.  I think there will be some patients who will have been in and discharged and never got to meet us and know about our services.  Some may have a bit of knowledge from leaflets, etc. but may not contact us, where as if we are in there, they can put a face to a name and we can build up a rapport and remind them we are here at any time during their SCI life and not just while they are in hospital.

I am really looking forward to the day when I can go into the Centre and connect with people face-to-face again. 

Independent Living

Living with Spinal Cord Injury

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