About

Ok so I’m new to this whole social media, keeping up with technology, writing thing so bear with me! I’ll start with an introduction to the old me, the me I used to be, the me that I was born as. I was always a bit of a Tomboy growing up, with my brother Chris only 22 months younger than me, we used to get up to all sorts on our BMX’s and building dens. I was always very active and took part in all the events on sports day and even ran 1500m for my school. I also had a love for horses and worked at the local

10007407_10153897896520324_1200762387_n
Before I got ill

stables to get free lessons and a token wage of £5! Now although that seems like nothing, ( I mean it barely buys a lunchtime meal deal these days!) all those little insignificant £5s turn into something worth acknowledging when you save them from the age of 11 to 16! Enough to buy my own horse the day after my 16th birthday! But it was just any horse, it was Spirit! Now those of you that know me will understand that our relationship didn’t get off to the best start. I was a 16 year first time horse owner and he was an untrained 3 year old destined to be in a Tesco lasagne. But, we worked through our differences and now 11 and a half years on we have a tight bond.

 

 

15192647_10157754128635324_8639411517223326102_n
My best friend

 

After completing my National Diploma in Equine management I qualified as an instructor and worked in a Equestrian Training Centre for 3 years. I decided it was time for a change so I went freelance part time and started care work. I love this so took the plunge and started working in Orthopaedic Theatres and was accepted to do my nursing qualification. As well as working full time and bank shifts, I managed to ride 6 times a week, go to the gym and socialise regularly with my friends. Life was good……

Then one evening at work I felt very strange. I excused myself from the theatre and desperately tried to make it to the coffee room. However, I was only in the kitchen when everything went black…… The next thing I remember is waking up in my parents bed the next day. What the hell happened?? My parents explained that I had suffered a major seizure. A seizure???? What??? I’d never had a seizure before….. surely there was a mistake? I felt awful though. Mum took me to the GP and whilst sitting in the waiting room I felt that awful feeling again….. then everything was a blur. I had another seizure and was admitted to hospital for 2 weeks. In fact the next 8 months were a blur. They consisted of 163 seizures, an accumulation of months in hospital including the high dependency unit, endless tests and scans, giving up my driving license, losing my job, mum giving up her job to look after me and having to defer my nursing degree. I suffered an extremely bad seizure in January 2015 which led me to being in a coma and in intensive care. This has left me with memory loss, dyslexia and dyspraxia. How had my life changed so much?16998680_10211962446597316_9009930490289095152_n

2 weeks later I suffered another seizure requiring admission but this time I was taken to a different hospital as I was closer to that one at the time. They struggled to stabilise me for 36 hours. Then they did a test for Addison’s Disease ……. it came back positive! They pumped me full of steroids and within hours I’d felt the best I’d felt in months and was even well enough to walk to the toilet! I was discharged after a few days and called back as an outpatient to see the specialist nurse 2 days later. We all bumbled into the office thinking it was a quick bish, bash, bosh, we don’t really know what’s wrong jobby, as most of my consultations were. We couldn’t have been more wrong! 2 hours later we walked out in a daze having learnt that I had a disease where my adrenal glands didn’t work. Now these tiny blobs on top of each kidney produce over 100 hormones making them kind of essential for life. I would be on 2 types of steroids for the rest of my life which I would have to take at strange times of day, I would have to double dose if I was unwell and give an intramuscular injection ( no epipen as it’s too rare to warrant funding!) and if I didn’t ensure I had adequate steroid cover I would go into an Addison crisis which would kill me if I didn’t get to a hospital quick enough. Oh, and I’d also suffer fatigue and joint pain forever! Hmmmm……..so much for getting my old active life back? Actually, sod Addison’s! It’s not going to stop me! So I started my nursing degree that March!

So how did I get here in August 2017 having to take a break from my studies when I’m only 7 months away from qualifying? Well during that time I suffered a few Addison’s crisis mainly due to kidney infections, I got urosepsis from ecoli, a chest infection led me to stop breathing, a stomach bleed and progressive weight loss. It was all bad though, I studied whilst in hospital, my seizures stopped so I got my driving licence back, I met the most amazing group of girls, won the Ade & Ravencroft prize for overcoming adverse

17308851_10158376133395324_3923389595997589538_n
Representing patients at the Endocrine Conference

circumstances (£1,500 going into my account was a pretty nice surprise!), was a finalist for the Nursing Times ‘Most Inspirational Student of the year’ award and started my final year with my grades sitting on a first!

 

I was also referred to a leading Professor at St Bartholomew’s Hospital. He diagnosed me with something even rarer…… Polygladular Autoimmune Syndrome. This is what had caused my Addison’s disease. It also attacks other parts of your body. It’s so rare they have no way of telling where it will go next. So far it has left me with the following; Addison’s disease, Hypothyroidism, Pelvic Inflammatory Disease, Asthma, IBS, Osteopenia, Pernicious Anaemia, Vitamin deficiencies, Postural hypotension, hyperpigmentation, chronic fatigue and chronic pain. Ok so I was never going to get back to my old lifestyle but I was going to make sure that I gave it a blooming good go!

Over the last 2 years I have lost more and more weight. When I was admitted in June 2017 I weighed less than 6 stone. I’m 5’5 so that’s not a lot! I went to my placement where I felt funny so went to lay down. Next thing I’m in resus with mum! I had suffered a hypo and despite IV dextrose in dropped again to 2 so I was given lots more. I was admitted and over then day given 3 litres of fluid through a drip. In the evening I realised I hadn’t been for a wee. The nurses did a bladder scan which showed only 125mls of urine……that’s strange. All night I was monitored every hour and my sugars continued to drop despite force feeding my face with chocolate under nurses orders (torture right?!). Then in the early hours I felt something I’d never felt before. My nurse knew something was wrong straight away. She made someone stay with me watching my monitor whilst she bleeped the doctors. Then….. disaster…… everything on the monitor stopped. CPR was started straight away and thankfully I came back without having to be shocked. I spent the next month in hospital and am finally home! But I will tell the rest of my story through my blogs as memories as there are some crackers!

18056942_10155235156252436_4015032566675945212_n

Join me and Grace on our road to recovery as we battle our way through PAS, stick 2 fingers up at it and blow raspberries in its face!

20265010_10159053104010324_1017389514842583902_n