Rose's Story
My names is Rose and I was first diagnosed with mitochondrial disease at the age of 20. I had not heard of this disease until after I had experienced an intense eight months in hospital.
I always used to get the occasional stomach ache and vomit, but every doctor had told me that it was just growing pains or that I had a slow digestive system. And sometimes I would get an odd pulsation in my eye lid. However, I never made sense of that.
It was only until I had a big night out with friends, did I realise that something was wrong. My arm began to twitch constantly at about 3am in the morning as I was walking home with a friend. I told my flatmate, then went to bed, still with a twitching arm.
The next thing I woke up with pipes and tubes down my throat in Dunedin hospital (as I was living in New Zealand at the time), and had no idea what happened. During my time in a coma, my friends and family had been warned that there may be a chance that I wouldn’t survive. I had chemicals injected into me, a nasal gastric tube, and I was on copious amounts of drugs, including epilim.
Not knowing what I had, the doctors treated me as a patient with epilepsy. Having a brother who died of mitochondrial disease, when it was unknown. He died as a result of being treated as an epilepsy patient and being on epilem, my dad knew immediately knew that I should not be on this drug. As a result of being on this drug, I went back into a coma for a few days. I spent about 3 weeks in the emergency ward, having doctors and nurses watch over me closely. My dad had a vague idea that this could be mitochondrial disease but the doctors said that there was no way that it could be because it is such a rare thing.
Whilst in the emergency ward I would wake up at certain times in the night asking the nurse where I was. Sometimes I would wake up thinking I was in a field of daisy, and another time I was curled up in a cask under a house. However, I could always see the nurse a few meters away. Some nights I wouldn’t get to sleep because I was constantly fitting. One night I woke up and was hallucinating, thinking that the bed was moving backwards and forwards. This was extremely scary for me.
I was in and out of hospital and rehab for just under three months with continuous fits and seizures. Not only that, I couldn’t walk because of my time spent in hospital so I spent my days doing physio whilst in the ward. I had finally gained back the muscles in my legs. I was walking, showering myself, and even going out on outings. This had me excited. Until one morning I woke up in hospital, ready for physio, to find that I could not walk again. Not only that, I had lost the ability to talk. I had no idea what was going on, except for the fact that that the doctors were changing my medications everyday. At this stage all I wanted to do was go back home to Australia. However, they would only let me out of hospital if I could walk with crutches.
I still could not walk, although the doctors allowed me to go back home. I arrived in Australia safely and was to have a three day EEG at Westmead hospital, before I could actually go home. I had not yet been diagnosed with mitochondrial disease, but instead with conversion sydndrome. The first night my mum stayed the night with me, whilst I had the occasional fit. The second night the doctor thought it was ok that no one had to stay over with me. However, I desperately wanted to someone to stay the night with me. Even though I asked the doctor not to take me off my medication as he had suggested, he still insisted and did exactly that.
That night lead to a series of severe epileptic fits, which I clearly remeber. The nurses had strict instructions by the doctor to give me clamazepam in case of a fit. I was fitting so much that I couldn’t even grab hold of the “call a nurse” bell, and my head kept banging against the bed bars. I would go over two minutes without breathing. I had never felt so scared in my life. The nurses kept giving me clamazepam to stop the fitting but it just made things worse. The doctor came at 2am in at morning. He was asking if I could hear him, I could hear and see everything around me but I just didn’t have the energy to move. I couldn’t even blink an eyelid or move lift a finger. I was then put into a coma for two weeks. I don’t remember waking up, but I remember the six months in hospital to rehab in extreme pain.
During my time in hospital and rehab I was stuck in a bed for many months. I, therefore, lost a lot of muscle in my body. I had to learn hot to sit up, hold my head up and even eat by myself. Now nearly a year of being out of hospital, I am on crutches, I take 17 anti-epileptic medications and 12 supplements a day. I still get quite a lot of twitching when have done a lot of walking, but I am slowly getting better. The thing that made me angry the most was that I had been wrongly diagnosed.
All I want to be able to do is to walk a reasonable distance without any twitches, and without crutches. I would like to be able sit down in public places after a long walk and not be twitching so much that it hurts my muscles.
7th March 2009