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Stories from this county…

Kent

Annabelle’s Story

annabelle

Me

My name is Annabelle Moult, I was born on the 5th August 1982, and I live with my Husband in Buckinghamshire UK.

What happened?

In 2007 on the 3rd September I woke up in the morning with a very bad headache and blurred vision (I initially thought I had a very bad vino hangover!!). The day carried on and I started to get really painful pins and needles in my legs, so I kept having scolding hot baths as this seemed to ease the pain. Danny (my Hubby) took me to see the Harmony Doctors at the Hospital, I was told I might be Anaemic and to go home and rest as I was going to the Doctors in the morning.

I went home and to bed, in the middle of the night I got up to go to the bathroom and collapsed. I realised that my legs were not doing anything and I could not move or get up, so shouted for Danny, saying something was wrong and we needed to get to the hospital. He had to pick me up off the floor and carry me to the car and into AandE.

Hospital

At the Hospital I was made to sit on a hard trolley for hours before someone saw me, by this time I was paralysed from my chest down and my vision was decreasing rapidly. The Doctors could not work out what was wrong with me. Over the upcoming days and weeks I had MRI Scans, Lumber Punctures, Plasma Exchange, so much blood taken every day all my veins collapsed. I was put on a very high dose of steroids for the first week to help bring down the swelling that was happening in the legions in my brain.

3 days after being in hospital I woke up and the world was black. I was blind.

I was initially at Stoke Mandeville hospital but it was decided I be moved to The John Radcliffe in Oxford due to the high standard of their Neurological Care. I was in hospital for nearly 6 months, they were unsure of what was wrong with me and due to how quickly my illness came on they informed my family that it did not look hopeful and I would more than likely never get better or out of there.

The JR were magnificent, I had Doctors around me all day every day trying to work out what had happened and why.

Luckily I was allowed to have someone (Danny, my Mum or a family member) with me all day every day, this enabled to keep some normality to my life, even if it was just someone getting me up and helping me to wash and dress.  I initially dropped down to 6 stone and was so frail and unstable I could not even put my own hair up or brush my teeth. But when I was finally able to do these every day tasks I had taken for granted previously, it was a real sense of achievement.

After approximately 6weeks of blindness I started to see shapes in the black, my eye sight continued to improve seeing black on black, then grey shadows and misty, and pixelated vision.

It was a miracle my eye sight was coming back but then I started to get spasms in my left arm and this became paralysed for a couple of weeks, now 3 limbs down and blindness, it was what one might say ‘an emotional roller coaster’.

After 4 or so months in the JR they had seen improvements and felt it best to send me to Stoke Mandeville Spinal Ward so that I could be taught how to live my life in a wheelchair. Having been such an active person prior to falling ill, playing hockey, rugby, horse riding, going to the gym numerous times a week, it was going to be a hard transition but something that I have adapted my life to learn to live with.

I did physio every day, wheelchair skills and general everyday activities to learn how to best live life in a wheelchair and being registered blind/severely visually impaired. I left hospital at the end of Feb 2008 at nearly 17stone (due to the steroids).

I have always tried to maintain a sense of humour and never ask ‘why me’ in my eyes why should it not be me?

Work

Within days of leaving the hospital, I had got myself back to work; after such a long time of being institutionalised in the four walls of the hospital I needed to get my brain back in gear and focusing on other things. My Company have been great in supporting me throughout my illness. They have made the offices accessible for me to get around and I have a large screen with magnifying software to ensure I can see what I am doing and working on. I left hospital at the end of Feb on a Friday and was back in work by the Monday!! Mad you may think, but it kept me sane. I was back to work 3 days a week for the first 6 months, just to ease me in, I was also very tiered all of the time, so I had to be careful that being back did not take me back to square one by relapsing. By the September I was back full time and have been ever since. Just because life has changed does not mean it has to stop,.

Friends and Family

I have found that it is vital to keep positive people around and unfortunately when times get hard you find out who your friends and family really are, I have lost friends through this and also pushed people away, but it has made those that stuck around even closer. My friends and family have been amazing and I could not have got to where I am now without their help, love and support. They really all are and have been amazing.

Diagnosis

It took 2 years before I was Diagnosed with Devics/NMO, so for that time until my diagnosis I felt like an alien, I did not know what was wrong with me, I had no idea what to do or what to read to help me understand my illness and I could not find a person in a similar situation to talk to. It was a 2-year battle and quite a lonely place to be, but once I was diagnosed it was easier to deal with and be able to have information to help understand what was going on inside of my body. I was able to start helping myself to get better.

I have tried so many different diets, I have tried physio, I have tried alternative medicines and therapies, and some of them I feel have worked, some I have had to walk away from!! But one day something will be found to ease the every day nerve pain I am in, build back the Mylein Sheath that has broken down around my nerves to stop the connection between my brain, eyes and legs. The unfortunate thing is that NMO is such a rare illness that there is not the awareness or the money for research.

They say NMO is incurable, but I say Never say never, one day my illness will go and I will see and walk again.

Karen’s Story

karenHi I’m Karen, a 40-something single mother of a 13 year old!  I was diagnosed with NMO in November 2010.

My story began in 2008 when I was diagnosed with cancer of the thymus gland.  Before this I was your average healthy person who enjoyed walking, camping, and travelling around seeing historical sites.  After the treatment, I took my parents on holiday to Wales as a thank you for the support they gave me.  However near the end of the week, I fell over and sprained my ankle.  We decided to come back to Scotland as I had difficulty in getting around.  I stayed at my parent’s house to rest my ankle.

That weekend numbness spread up to my knee so I went the local A&E department who checked me and said that they thought that I needed to rest it.

Over the next 24 hours the numbness spread up my leg to the point where I needed a stick to help getting around.

I had to go back to my house as I was having a new suite delivered.  After it was delivered I fell over and couldn’t get back up, I was rushed into A&E again, but this time I was admitted. Within the week I was paralysed, all I could move was my head and arms.  I was in total shock and bewilderment as to what had happened.  I had recovered from the cancer treatment, I hadn’t been ill, I was planning on returning to work in a few weeks.

The doctors poked, prodded & scanned me.  However they were just as bewildered as me.

I was given high dose steroids, and within a couple of days I could move my toes and then tap my foot.  At this point I was transferred to another hospital where there were specialists in Neurology.  I was again poked, prodded and scanned and still they scratched their heads as to what was wrong.

I was transferred to the Physical Rehab unit for intense Physio, and after 8 months of hard graft I walked out of there on crutches.  The doctors had put the paralysis down to damage caused by radiotherapy.

This isn’t the end of my story!  Six months after leaving hospital I ended back there again after a fall in the kitchen while cooking the tea.

Again I was poked, prodded and scanned, then transferred back to the specialists to be poked, prodded and scanned yet again!  I was given the dreaded steroids but this time movement did not return.  Finally I was given a diagnosis!  I had tested positive for the Aquaporin 4 antibody and the doctors confirmed that I have NMO spectrum disorder. What a relief to be told what I had.  I could now move on with my life and deal with the challenges ahead.

I was transferred to another Physical Rehab unit with the aim to be as independent as I could be at home.  Four months later I was home and I had my daughter back.  My parents very kindly looked after her in while I was in hospital.

I have been told that I am unlikely to walk again and I am now permanently in a wheelchair.  Each day has its own challenge, but equally it has its own achievements.  I am lucky to have a great support network, from carers to doctors to the Walton centre, as well as friends and family.

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