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( My Story Hannah Butterworth United Kingdom )

My name is Hannah Butterworth. I live in England. I am 25. I have M.E. (Myalgic Encephalomyelitis) and have lived with this illness on and off for the past 14 years. I have experienced this illness as a child, as a teenager and now as an adult. So as you can imagine I have a lot to say about what it’s like to have the illness over the different age groups. I am interested in other people’s experiences and thoughts and perhaps sharing advice and some knowledge. About four years ago I was admitted to the specialist unit at Oldchurch Hospital Romford London, under the care of Professor Findley. 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 confidant 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 an 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 outpatient 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 a lot 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 program 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 program in earnest. I thought at last I have something constructive to do, and I know this is going to make a big difference to my life. Unfortunately things didn't go at all like I'd expected. Having already spent most of my life so far being 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 program although I never felt any improvements. About a year or so later I meet up with Professor Findley and it was decided that I would go to Oldchurch Hospital as an Inpatient so that they could have a proper 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 consider to be "worthwhile" and with each year that passes a successful 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 asks 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 counselor and if needed you can see a dietician but I was lucky I have not got any intolerances so I never saw her’ I worked a lot with my counselor because I've found being ill extremely difficult over the years, and that is hard for me to admit, as there is such a stigma attached to having to seek this type of professional help. I thought it was just oversensitive weak people that went to therapy but I was wrong! One of the things that I find difficult is the fact that I will constantly compare my life to that of my friends. What they have achieved, but I haven't. Places they've visited, but I can’t. Goals that they've reached, but I can only dream of and so on. I never talk about being ill with anybody so when I first started having counseling it was a new experience for me. From talking to no-body I was suddenly expected to speak of nothing else and that was painful for me. I was told that I was wasting energy suppressing my emotions and that energy was badly needed elsewhere, I don't know if I believe this but I am prepared to accept that this may be the case. When I was first offered counseling I didn't want to know I refused to see her and she accepted that with grace. I thought yes I have emotional issues, but they are mine and I just can't and I won't talk about this. My OT spoke to me the next day in a harsh but fair manner and I gave in. This was and is the scariest decision that I have ever made.

My counselor was lovely and I immediately liked her, but liking her made me feel nervous because I didn't feel this was a safe relationship. I think that what counselor or therapist's offer is a synthetic "friendship". At no point is what they offer you genuine. The bottom line is no matter what happens they will only ever see you as a client, not an equal and not a friend. I stayed with my counselor on and off for about three years and more recently once a month for about a year. Over this time we talked about many things and in the end she probably understood me better than I do myself or at least would ever admit to. I saw her for the last time at the beginning of January and even now not many days’ go past when I don't wonder what she is doing or where she is. I have a tremendous amount of respect for her and she is someone who I will never forget. As a person she was immense and she has been an inspirational figure in my life. I am one year on now from when she left and some days I still miss her but I realize that I need to move on with my life and sail on to calmer waters. I see a Psychotherapist once a week, we are changing my program a little and I hope to be able to push on and start getting my life back. I still feel the stigma attached to being in therapy and few friends outside my inner circle know that I receive this kind of help. However if this were the difference between me getting better or not, then I'd be an idiot not to take this opportunity and see where it gets me. I already have enough regret in my life without looking back and thinking if only I'd...........because ultimately this sort of thinking can and will destroy you. I don’t as a rule like to think too much about the future and what it holds for me. When I think of the future I feel afraid, my biggest fear is to get better and discover that everything that I’ve dreamed of through these difficult illness years has been exactly that, a dream. I worry that I won’t ever achieve anything and that my family and friends will never be proud of me. I hope everyday that the illness hasn’t robbed me of the life I was meant to have, but somehow never got. The bottom line though is this, I don’t know what the future holds for me, I have no magic crystal ball, but I’ve got one shot at this life and if I give in to my negative thinking then I’m beaten already, and the future that I see on a black day will become my reality. So I'm going to take a deep breath, dig deep, and I'm going to fight for my future and what I deserve, I will not rest until my mission is over, and my goals have been reached.