When I first became ill I wasn't sure what was wrong with me, I was having blood test after blood test and they all came back negative for everything that I was tested for. Some days it got to the point where I was wondering if there was actually anything physically wrong with me. Then one day I saw my GP and he said that he thought I could be suffering with something called ME, I thought great at last I have a name for this and I can start to recover. Little did I know that this was only the start of a very long journey for me.
I was lucky my Dad had medical insurance that he had taken out when he first started working for BT. Using this I had a difficult decision to make. Did I want to see someone who I had heard was the best but they would only pay out once or did I want to see someone they chose for me and I could see them whenever it was required. I decided that I wanted the best. I was referred to a Neurologist Professor Findley, and although there was a long waiting list I was confident that I had made the correct decision.
My appointment day arrived and my Mum,Dad and I got in the car and drove up to London. As I had gone private we drove up to a very plush looking house and the meeting began. I still remember how I felt that day. Worried because I didn't know what was going to be said, anxious because I dislike talking about being ill and discussing things that I consider to be personal and private, and upset because I have found being ill a tremendous strain not just physically but emotionally too.
He wanted me to come in to Oldchurch Hospital as a inpatient for six weeks but I wasn't keen. I was 17 and a small time country girl and the idea of spending that amount of time away from my family and friends sounded like the worst suggestion that I'd ever heard. So we all agreed that I would start off as an out patient and see how things went. I was assigned an OT(occupational therapist) and we worked together to make a lifestyle management programme. This included splitting my day in to sections of rest and activity, establishing baselines(how long you can do something for) and how we where going to improve on them. As you can imagine this was alot of information to be getting on with and my head was crammed full with good intentions and enthusiasm for this new way of life. I was certain that If I followed this programme then everything would be fine, and my life would go back to normal and it would be as If I'd never been ill. Simple as that. I was heading for a big fall, one that I just didn't see coming. The next day I started the programme in ernest. I thought at last I have something constructive to do, and I know this is going to make a big difference to my life. Unfortunatly things didn't go at all like I'd expected. Having already spent most of my life so far beening told when to get up, when to go to bed and what time I had to be home for I suddenly found myself pushed back in the same situations which I had disliked so much as a child. I struggled on with the programme although I never felt any improvements. About a year or so later I meet up with Professer Findley and It was decided that I would go to Oldchurch Hospital as an Inpatient so that they could have a propper look at me. I wasn't exactly thrilled as I didn't want to be away from everything that I had grown used to but I knew that this was possibly my last chance of a recovery. Since I have been ill I've constantly worried that my life is standing still while my age is still growing. I've always been a deeply ambious person so this illness has hit me hard because there is a part of me that is concerned that I will never make anything of my life, I won't ever achieve anything that I concider to be "worthwhile" and with each year that passes a sucessful career seems ever more distant and unlikely.
I arrived late Sunday evening to find a tiny ward with only six beds, each bed was surrounded by the outdated curtains that only hospitals can provide and it was deathly quiet. The best way I can think of to describe it is that it's was like watching the television with the sound off. My parent's left for home and I felt totally alone. I look up to see a lady trying to get the first glimpse of the new patient. She ask's me a question and we begin chatting and instantly I feel much happier. To this day we are still friends and keep in touch. During my stay I underwent many tests. These included full blood tests, a MRI scan, EEG (a brain scan that measures electrical activity in the brain) and an ECG. As before I was given an OT and together we worked on goals and how I was going to reach them, how negative thinking can impair your recovery, how I feel about being ill and how to live with a chronic long-term illness. You also work with a counsellor and If needed you can see a dietician but I was lucky I have not got any intolerances so I never saw her.
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