How do you eat an elephant?  One bite at a time.

Previously an Intensive Care Nurse and now a talented and published writer, Headway Nottingham member, Candice, shares her own moving experience of brain injury.

Listen to Candice sharing her story on BBC Radio Nottingham (3 mins 39)

I find it quite hard to talk about things and my life how it is at the moment. It’s a tender point as I feel very alone in my day to day life and without all the abilities I used to have.

Before I had the head injury I worked as a nurse in various wards and units for almost 20 years. The last five or so years I worked in Intensive and High Care Units. I loved working in these units as the days were often adrenaline-packed, so much so that after a 12 hour shift, I couldn’t fall asleep because the adrenaline was still pumping around my body. One slip up and the patient could die. I did really well as a nurse and loved what I did.

I was able to apply myself perfectly then, giving attention to every detail... I felt important and whilst it was jolly hard work, it is a good feeling to know that there are people alive today because I have helped them.

I’ve never been one to sit still, physically or mentally, and I had always wanted to study Psychology. At the beginning of 2014, the opportunity arose for me to start studying. I jumped at it and started a BA degree in Health and Social Sciences. I took on full time study whilst working full time and I loved it.  I thought when I looked at the schedule ‘Candice, how are you going to do this?  How are you going to fit all this study in whilst you’re working so many hours?  I thought ‘well how do you eat an elephant? One bite at a time!’

If I hadn’t had the brain injury, this year I would have been doing my finals.

I was standing in my shower bath, and I slipped on the non-slip mat. The whole weight of my fall was my head smashing the side of the bath.  I lay unable to move, my body was paralysed so I couldn’t feel anything from my head down.

The sound from my head smashing the side of the bath was huge.  I heard the neighbours in the next door flat come running to see what the hell the noise was, and I cried HELP twice and I thought ‘what’s the point?  They can’t get into your flat so I need to just move’ but I couldn’t feel anything at all. I think I lost consciousness then. There were moments where I blacked out and awoke. I was probably lying there for about 15 minutes but for me it felt like two or three.

I thought ‘I’m going to die any second’.  I prayed, and I believe that a miracle happened.  I prayed and I cried out to God ‘Help me now’ and somehow I moved out of that bath. The next thing, I was standing up, and then I was in my bedroom.  I had varying diagnoses in the days and weeks afterwards including post-concussion syndrome.  I damaged the inner ear where I whacked the side of my head and to this day I have problems with that.

I couldn’t move the left side of my body well, I had injured my shoulder quite badly so I had my arm in a sling. But at that point they said ‘you’re probably not walking because you’ve got post-concussion syndrome’. They were giving ‘probablys’. I could only walk a few metres. I didn’t have anyone at home and they discharged me after just four days on very heavy medication, which I had to take alone. I couldn’t even think or walk straight, let alone look after myself. 

Over time my walking got dramatically worse so by week five or six I couldn’t walk at all, both of my legs had gone numb. 

The harder I tried to walk the harder it was to walk, and I would try and force myself like ‘you HAVE to walk Candice, you can’t lose this ability’. 

The only way I could move from one place to another was to manually move one leg in front of the other by pulling on my trousers. I literally lay on my bed for over 2 weeks unable to care for myself, with no help and with no answers as to why. I was finally readmitted for the third time and was then diagnosed with Functional Neurological Disorder. I was in hospital for 8 weeks this time which wasn’t fun.Candice shares her experience of brain injury

They tried to get me some neuro rehab but nobody would take me because of the diagnosis – they said with FND you don’t know how someone’s going to progress or if it’s going to work. To this day I haven’t had any neuro rehab, nearly four years since the injury.  I’m awaiting and perhaps I’ll get it in London this year.

When they diagnosed me they pointed me to a website to find out the signs and symptoms, and told me to join some Facebook pages, they didn’t give any prognosis they just went ‘this is it’ and there was no help. There has been no prognosis or advice for a way of living, they’ve just said ‘rest if you can’.  How can I rest?  I’m single, I don’t have family here, and I’ve got no one other than Headway supporting me.  Everything is a fight to get – from getting benefits to home care and equipment. I had a 7month struggle to get home care. I recently had to fight to stop them putting me in a nursing home.

Someone told me about Headway. 

When I was given the date for my PIP tribunal I went onto Disabled View UK, and a lady called Lorraine helped me through what I needed to prepare.  I think it was Lorraine who found Headway and I can’t thank her enough for that because this has been my saving grace.  I don’t go anywhere, not even to church anymore because they have flashing lights there now, and I have far too much anxiety to go to a different place with people I don’t know. I haven’t gone anywhere social for eight months because of the anxiety so the only time I see people, other than my carers, is on a Tuesday [at Headway]. 

I love coming here because I feel like I’m at home. When I’m not here... I’m having to try and be something that’s not easy for me at all. I’m having to force myself to still fit into society and I’m not fitting in because I’m not understanding people and they don’t understand me. It is incredibly difficult and sometimes I just want to stop trying. Now I’m learning to say ‘yes I have a brain injury please be patient.  I look normal, I can sound normal, but I might struggle with what you’re saying’. 

Charlotte, Lexxi [Staff members] and the team communicate with me in ways I can understand.  I feel like I am human being when I’m here, I feel like I have some worth.  When I’m out there I feel that I’m an outcast and that I’m no longer a valued member of society, but when I’m here I feel like I’m important. I feel like it’s okay to be not okay.

I feel like I’m normal because everyone else here struggles at a similar level to me. 

At Headway I feel supported.  I feel loved.  I feel valued. 

Headway has helped me immensely with benefit applications and various other really tough situations like losing my care package and my home. Headway has completely supported me in every avenue of my life really and to try and get that support out there… well, there isn’t any, there really isn’t. 

Creative Writing as rehabilitation at Headway NottinghamWe have lessons at Headway.  I never knew I could write poetry, I never knew I could write prose, stories, I never knew that was part of me.  To have that has made me think ‘wow, you might have whacked your head and now you can’t do a thousand other things but you can actually write’.  When Rosie will give us a task and I’ll think ‘Is she serious?  I can’t do that’ but then after some time I’ve produced something and the class goes ‘wow’, I think ‘oh, so it’s okay!’ I’ve been massively stimulated and grown as a person when I didn’t think any part of me as a person was salvageable any more.

I live for my Tuesdays – my day when I come to Headway. It really is the one thing that has kept me going and does still keep me going.

If I compare what I was like working in intensive care to how I am now, it’s two different people really. My life is completely different and it’s hard to even think about that, but when I come here and I look at everyone else and I think ‘they’re all completely different to how they were X amount of years ago, they were all something different and they’re all still here and they’re all smiling.  

I see the difficulties, the scars on their bodies and I think ‘you know what, Candice, look around. There are some here without family support, there are some here that don’t know how to read the time from a clock just like you, there are some here that can’t think straight just like you’ and I don’t feel alone.  Headway is my world.

Every 90 seconds someone in the UK is admitted to hospital with an acquired brain injury. 

It can happen to anyone at any time so it is essential that we continue to exist to rebuild lives. We must find around £1,000 a day to run our service and we are largely dependent on the friendship of our local community. 

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