When it came to New Year’s eve, I stayed at home as I didn’t trust myself to go out alone, I thought that if I went outside there might be a chance I would collapse while crossing the road, or even just walking. From then on I would depend on mum or a friend to lean on.

In January 2004 I was transferred to St Luke’s in Bradford and had an appointment to see Mr Busby to see how I was doing. We went by ambulance taxi because we didn’t know where to go.

We went into Mr Busby’s room, and had a chat about how I was doing, I was still feeling a bit down about everything. He did some tests on me such as pushing my shoulder backwards, and I would try and keep in it place but my muscles were still weak and I found it difficult. He suggested I stay on 10 steroids a day until the next visit.

The next visit in early February, we had another visit to St Luke’s to see Mr Busby and I was feeling a bit happier about everything. Mr Busby noticed that. He did the usual tests and I was feeling stronger this time, so I think it was better than the last visit. He also said I could start reducing my steroids each week so I was happy about that. I wanted to be off them because I didn’t want to get side effects that can happen if you’re on them for a long time.

He also said he wanted me to have a muscle biopsy because he wanted to find out more about the condition I had. I was a bit concerned about this because it sounded scary and it would be under local anesthetic.
I had a million questions about the muscle biopsy running round my head, what would it be like? Would I have a scar? Will there be needles?

The ambulance taxi took me and my mum to St Luke’s for a pre-op visit, just to see if I was ready to have the operation, see if I had any allergies, medications etc. They weighed me and took my height and told me what they would be doing for the operation, where I would be staying etc. They said the day before the operation I had to stop taking the steroids until after it. I was a bit worried about this because you’re not supposed to stop steroids suddenly, you have to gradually reduce the dosage – but the nurse reassured me I’d be ok to stop taking them until after the operation.

A week later, the ambulance taxi took me and my mum to the hospital for the muscle biopsy. We found the ward I was having it on, and the nurses did all the usual tests; I was used to all this by now.

They put a hospital bracelet on my wrist and I was shown to my bed. The surgeon who was doing the muscle biopsy came round to see me and explained what he was going to do. He asked me which leg I wanted the biopsy on, and I said my left. He drew some arrows on my leg with a purple marker pen where he would do it, I felt very silly with arrows on my leg. I thought it would only be a small cut and he would take some muscle out and send it off to the lab.

I said bye to mum and went into theatre, the nurse put a cloth cover between me and the surgeon so that I didn’t see what he was doing. I was trying hard to stay still. It helped that the nurse talked to me through it all, asking me questions about my family and my studies. I felt pulling sensations in my leg but no pain, it was a strange experience.

After 15 minutes in theatre, they bandaged my leg up and sent me back to the ward where I had a long sleep. The nurse said I could go home if I wanted, or I could stay in hospital until the following morning. I decided to go home because I felt I’d be more comfortable there, but I was still worried about the pain so the nurse suggested I get some Calpol medicine to help.

I was glad to get home and get comfortable on the settee, I took some Calpol and it brought much needed relief and took away the pain of my bandaged leg for a few hours.

A week later, I had the staples out by the nurse at my local surgery. I remembered the nurse there because she’d taken the stitches out for my cochlear implant. She showed me her nifty gadget of getting the staples out, and was painless.

I was kind of proud of the scar, it may have been painful but it reminded me that I was brave and I got through it. If I could get through that I could get through anything.

Through the next few months, we paid a visit to Mr Busby; he’d been in contact with a hospital in Newcastle and wanted me to see a doctor there as he was the best specialist in the UK.

We kept getting phone calls from Newcastle to see if I could have a biopsy there when I had already had one at Bradford. There was a lot of confusion about the biopsy and where the results were going; I was so worried I had to have another biopsy because the last one was a traumatic time for me. It all turned out well in the end though, and I didn’t have to have another biopsy, they had enough muscle to send to Newcastle to be tested. I was very relieved to know that.

I went up to see the specialist at Newcastle to shed some light on the condition the doctors thought I had. My dad took the day off work to take us there, it took 2 ½ hours and I got to see the Angel of the North on the way there. It was hard finding the hospital; we went by St James’s Football ground and saw a few sights on the way there.
The nurse called us in, I met the doctor and we all had a chat about what had happened so far. He asked us some questions about the family history and whether this had happened before, which it hadn’t. The doctor felt it wasn’t genetically related because my brother was completely healthy but he took some blood from me and my mum to do some tests along with the muscle from the muscle biopsy. I had an ECG to check my heart was working as it should, and it was.

As the months went on, I felt myself getting stronger and was enjoying my college course. We had a call from Newcastle to say hat they wanted us to come back up there to discuss the results of the blood tests and muscle biopsy. I couldn’t see why we had to go all the way back up to Newcastle when they could tell us the results over the phone but apparently it was too complicated to explain over the phone.

In November 2004 when I was 19, my parents and I went back up to Newcastle to get the results. The doctor explained that I had a condition called “Mitrochrial Multiple DNA Deletions” and that it was the main reason I went deaf. The mictrochrial is responsible for providing energy so the condition meant that I would be short of energy at times, and need lots of sleep.

The doctor also told me that it could be responsible for my weight loss over the years because my swallowing muscles were weak. He told me that I could have as much chocolate as I wanted because chocolate is good for energy, the main thing was to eat small portions of food but often. He was surprised to see the condition in someone so young because it normally starts showing when you are older. It was like fitting the missing pieces of the puzzle, the deafness and the body weight was all connected. We had a reason for why all of this happened to me so we were all happy about that. Although there was no cure for the condition, they would transfer me back to St Luke’s and keep an eye on me as I grew up. I felt happier about everything now, as we drove home back to Huddersfield.

I hoped that things wouldn’t get any worse, for the time being I was fine and as long as I get enough sleep, I was full of energy.

I went to see a dietician at my local surgery to get help to put the weight back on that I lost from being in hospital. I needed to put a stone back on; it wasn’t going to be easy! The dietician gave me advice on how to get the best out of the food I eat. I still have nutrition drinks too.

I enjoy college but I’ve lost a lot of confidence due to what I went through. I hope to regain it. I developed OCD (Obsessive Compulsive Disorder) of washing my hands and checking things were clean. I washed my hands so much they were red, and blistered sometimes. I had good days and bad days, but it got on my nerves so much that my mum and I went to the G.P to see what could be done to stop it. We think it developed from the time I had in Intensive care because everything was so clean. I think I associated the cleanliness with the infection, and I didn’t want to get another infection in my left ear and lose my Cochlear Implant. I am so terrified of losing my cochlea, which would mean I’d never hear again. That is my worst nightmare.

I went to see a counselor to talk about the OCD. It was hard to talk about it without getting upset because I just wanted to stop it, but it would take six months on a waiting list before I could get the help. Until then, I had to get on with life. I really appreciate my family and friends for helping me through everything. I’m looking forward to my 20th birthday and hope that my OCD will get better in time. I hope to finish my college course and continue my education.

To be continued...