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Cystic Fibrosis
My Life with Cystic Fibrosis
To learn more about CF, please visit CFStudy.com. Please also read my article about sport and exercise with CF. |
By way of introduction, I am Sarah Walters, aged 49. I am a qualified doctor and I have cystic fibrosis. In October 2005, I reached the grand old age of 47 still working and fit enough to do aerobics three or four times a week, as well as cycle 100 kilometres.
I qualified as a doctor in July 1985. Since qualification I completed a year working as a house officer in medicine and surgery, senior house officer jobs in geriatric medicine, intensive care and chest medicine, and registrar jobs in general and chest medicine. I then trained as a registrar and senior registrar in public health medicine in the West Midlands, becoming a senior lecturer and honorary consultant in public health medicine in February 1993. I am a Fellow of the Royal College of Physicians and a Fellow of the Faculty of Public Health. Until April 2006, I worked at the University of Birmingham, researching the way in which cystic fibrosis affects adults, children and their families, and the best way of providing medical services for people with CF. I was responsible for a taught Master's degree programme in Public Health, and the academic training of specialists in public health in the West Midlands. I also have a research interest in the way in which air pollution affects health. I have been a member of Department of Health Committees on Cystic Fibrosis and Air Pollution, and am currently a member of the Medical Advisory Committee of the CF Trust, as well as the CF Trust Database Committee and Microbiology Consortium, and was an examiner for the Faculty of Public Health until 2002. I was awarded an OBE in 2004 for Services to Medicine. In April 2006, I finally retired from work, and now undertake voluntary and honorary work for the CF Trust and University of Birmingham, as well as helping my husband, Stephen, to run a business from home. In 2007-8 I worked hard to qualify as an aerobics instructor, advanced fitness instructor, personal trainer and nordic walking instructor, and have also qualified as a BASI Level 1 ski instructor. I now work very part-time doing freelance aerobics, personal training and nordic walking classes.
DIAGNOSIS
I was not diagnosed as suffering from CF until I was ten years old. In retrospect it was an easy diagnosis to make - I suffered from repeated episodes of chest infection since I was a baby, I was underweight and had frequent tummy pains. My mother's concerns were dismissed as neurotic, but finally, having witnessed a slow deterioration in my condition despite antibiotic treatment from my GP, my mother insisted on specialist referral. The Paediatrician at the local hospital diagnosed CF almost straight away. I was referred to Dr David Lawson, who ran one of the very few CF centres that existed in 1969, at Queen Mary's Hospital for Children, Carshalton.
I am fortunate not only to be relatively mildly affected by CF, but also to have had excellent medical care from the moment of diagnosis which has no doubt contributed to my current state of good health. I carry two relatively common mutations of the CF gene, the G551D and 1898G>A.
GROWING UP WITH CF
Because of the late diagnosis I did not always know I had CF. Indeed the diagnosis came at an age when children are resentful of being labelled different from the others. I felt no different after the diagnosis was made than before it. Never before had I needed special treatment or physiotherapy. Suddenly I was told I had a condition I had never heard of before, given bottles of horrid-tasting antibiotic syrups to swallow and even worse, twice a day, I had to lean over a foam rubber wedge and be thumped on the back by my parents. And all the time I felt quite normal.
I liked school and my friends, then suddenly things such as "handicapped" and "special schools" were being muttered behind closed doors by doctors and advisers. I was horrified to learn that this was what was expected to happen to children with CF in 1969.
Fortunately my parents were resolute in the matter. They were determined that I should carry on at normal school and do as much as I could, even if I had a shorter life. The price I had to pay was to stay back a year at school. I took this as a bitter blow. I was separated from my friends, and saw it as a punishment. The only people who had stayed back a year at school in my experience were either stupid or naughty. I knew I was not stupid, so I spent many sleepless nights wondering what on earth it was that I had done wrong to deserve this!
ATTITUDES OF TEACHERS
After CF was diagnosed the attitudes of teachers towards me changed dramatically. I was really trying to do well at sports, but couldn't becuase of my chest condition. But the teachers used to scold me for being lazy and not trying. After the diagnosis, they became patronising, offering me the chance to rest. I really resented what came over as a very hypocritical attitude and I didn't want to rest - I wanted to try hard and be good at sport, I just needed a little understanding and that was lacking both before and after the diagnosis.
MY REACTIONS
At this point, I could have given up, capitulated to my new illness and become an invalid, which is what I was expected to do. However the diagnosis of CF channelled my normal teenage rebelliousness into productive channels and I fought against the illness. I worked hard at school and came top in nearly every subject, I showed the sports teachers that not only was I as good as the rest, I was good enough to get into representative teams in rounders, hockey, netball and athletics. I also joined three choirs and learned breathing control in a far more enjoyable way than physiotherapy.
During my teens I became aware that sport and singing were far more effective than a session of physio in clearing my chest. My parents realised this an supported me in this. You may not think this unusual in an age where CF children are encouraged to do sport, but twenty years ago this was revolutionary - I was supposed to be handicapped!
With all the medication, physiotherapy and sport, I slowly became fit and well again. It was only many years later that my parents told me something very sobering. When I was 12, I was taken away from school on a caravan holiday round Scotland. This was because they had been told I was unlikely to live beyond 14 years, and they wanted me to have a good holiday before I died.
GROWING UP
By the time I was 14 I was far from dead, however. Athletics training had given me strength and muscles. I was a patrol leader in the Girl Guides, a sprinter with Mitcham Athletic Club and in the church and school choirs. I was learning to accept the limitations imposed by my illness and concentrate on the things I could do well. For example no amount of training would allow me to run more than about a mile, but I could run 100 metres faster than anyone else in the school.
Like all teenagers I wanted to go to Guide camp, go to discos and dances. My parents never stopped me from doing this, and allowed me to learn for myself that smoking, and smoky places were bad for me.
AMBITIONS AND DISAPPOINTMENTS
Ever since I was three years old I had wanted to be a doctor. That was when I found out ladies COULD be doctors! When I was about 16 my parents attended a meeting of the CF Trust in London at which an eminent doctor was speaking. Afterwards they questioned the doctor about my ambitions. They were told that it would be impossible for me to become a doctor and that it was best to dissuade me from this and consider alternatives. Other experts had the same view, and although I was bitterly disappointed we decided we had to take their advice, being a non-medical family.
That year I got 9 O'Levels,8 with grade A. I started studying for four A'Levels and decided to read Microbiology at University with the intention of ultimately researching into problems of infection in cystic fibrosis. In 1977 I obtained four A"Levels, three with grade A, and in October of the same year commenced my studies at the University of Surrey.
My health at this time was excellent. I was sporting and active. I had started playing cricket regularly with a local club and was selected for the County second XI. I was reserve for the University Ladies' Squash team, and goalkeeper for the University Ladies Soccer team. Contrary to expectations I thrived on the life away from home, revelling in the hectic student life and late nights in the Student Union.
BACK ON COURSE AGAIN
Then two things happened to change my life profoundly. The first was that I obtained a job as a medical secretary during the summer holiday, at Epsom District Hospital, working for the surgeon for whom I ultimately worked as a House Surgeon. The second was that my father developed cancer and died half way through my final year at university.
Both brought me back into prolonged contact with the caring services and in particular, with doctors. I loved my work at Epsom and spent all my holidays there. It certainly re-kindled my longing to become a doctor. The surgeon for whom I was working offered to support my application with a personal reference, and wrote to the Dean of St George's Hospital Medical School on my behalf.
During my final year at University I worked on a research project and chose to look into antibiotics used to treat Staphylococcus aureus in cystic fibrosis. I read extensively about the scientific aspects of CF for the first time. Armed with this information, I wrote directly to the deans of several medical schools asking if I would be accepted despite my CF. Some said no, some said I would have to have a medical, but St George's and Guy's both offered me a place. In October 1980, having obtained a First Class Honours Degree from Surrey University, I commenced my training at St George's.
UNIVERSITY HEALTH SERVICE
Although I had been very well away from home I did have episodes of chest infection. On one occasion I was admitted to the University sick bay. They were very kind, but neither the doctors nor nurses knew the first thing about CF. Whenever I needed repeat prescriptions I could never get to see the doctor, and was issued with a prescription for a one week course! After several weeks during which I spent most of my time getting prescriptions and taking them to the chemist, I obtained my NHS card from the University under slightly false pretences. I then went back home at the weekend to re-register with my old GP. Since there were so many students on their books they did not notice I had gone!
FINANCIAL CRISIS
I realised that there was a strong possibility that I would not get a grant to study medicine and this was now confirmed, despite letters from St George's themselves to support my claim. Two weeks before my studies were due to start and I still had no funding. My mother could not support me. She was suffering from a relapse multiple sclerosis from which she had suffered since the age of 19. I had worked all the hours god made in the holidays to try and save £3,000 to guarantee my fees, but could not manage it. In desparation I wrote to Ron Tucker, then Director of the CF Trust, not expecting anything to come of it. To my amazement and surprise, a letter arrived just before I was due to start, offering the payment of my fees and £500 a year to live on for the five years of my course. The money came from the Joseph Levy Charitable Foundation, and it is entirely due to this that I am standing here today giving this talk.
Of course £500 a year was not much to live on even 15 years ago. I had to work every spare moment of my holidays and even had a weekend job as a nursing auxiliary at a geriatric hospital. I travelled to my studies by motor bike, and the cold affected my chest. I was wearing myself out.
But my persistence was rewarded by coming top in both first and second year exams and winning a Scholarship and Exhibition for my troubles. This eased the financial pressure, and my mother bought a new car and gave me the old one, so I could travel in comfort at the expense of having to become an instant mechanic!
MEDICAL TRAINING
The last three years at medical school are spent training on the wards, with no long holidays like the other students. I really enjoyed my clinical training. Every subject had its fascination, even Psychiatry!! I learned how to take blood, examine patients, diagnosed illnesses, deliver babies, put up drips, assist at operations for hours on end.
I knew that several things were going to count against me in the future, however. I wanted to go into hospital medicine, which was oversubscribed anyway, without the added disadvantage of being female and having CF. I knew I would have to be outstanding so people would want to employ me, and that I would have to avoid sick leave if possible.
With a little hard work and a lot of luck I qualified Bachelor of Medicine, Bachelor of Surgery in 1985, with Honours in Medicine, and prizes in Medicine, Pathology and General Practice.
WORKING AS A DOCTOR
After qualification you have to spend a year working as a hospital houseman, with six months in medicine and six months in surgery. Current publicity has highlighted how exhausting the work is, even for fit people. At that time, there was no European Working Time Directive. I had to work between 80 and 120 hours a week (there are only 168 hours in a week). You work all day, Monday to Friday, plus one night in two or three and one weekend (from Friday to Monday) on call. You are responsible for admitting emergencies from Casualty as well as all the patients of your specialty on the wards. Sometimes you can go a whole weekend without sleep. You often have to miss meals - you can't leave a cardiac arrest to go to the canteen. Visiting time, when relatives always want to speak to the doctor, usually co-incides with canteen opening hours, and we often relied on medical students to go and fetch us take-aways.
You also need to be physically fit, although there is no leisure time in which to participate in sporting activity. In a large hospital you can walk over 50 miles a week. You sometimes have to run up to half a mile to a cardiac arrest and still be in a fit state to administer resuscitation when you get there, although I have been known to have a quick whiff of oxygen myself before getting going!
There is no time to look after yourself properly - If you don't go to bed you miss both nighttime and morning doses of drugs and physiotherapy. If you start to become ill over the weekend there is no way of getting someone to cover for you. You just have to hang on until Monday, and still work flat-out. For example one weekend, while developing an illness myself, I had to deal with a cardiac arrest on one ward, a patient who collapsed on another ward and a diabetic admitted having fits due to low blood sugar, all within the space of half an hour! Of course by Monday I was very ill, but fortunately my boss recognised this and sent me home to recover.
GETTING ON WITH MY CAREER
House officer posts at that time lasted just a year, then you had to decide which area of medicine you wanted to work in and obtain senior house officer posts. The contracts for these posts last only six months, so you spend much of your spare time looking for jobs. Good SHO jobs in Medicine can attract over 200 applicants for one post. Although slightly less demanding than House Officer posts, the hours are similar with the added problem of fitting in study for postgraduate exams.
Obviously the fact that I had CF has been discussed at every interview and on occasions I am convinced that it has been a deciding factor in not getting the job. I can sympathise. With 200 candidates to choose from, they are looking for any reason to reject you. Nevertheless, I have been lucky enough to obtain excellent jobs in hospital medicine, which involved working with some of the best doctors in the country.
WORKING WITH CF
I spent six months at the Brompton Hospital as an SHO in chest medicine in 1987/88, and although I was not working on the team directly involved with the CF patients, nevertheless I looked after them when on call. It was quite sobering at times to see those less well than myself, and realise how lucky I had been, but I also enjoyed the work greatly, and I felt determined to carry on in chest medicine.
POSTGRADUATE EXAMS
In order to progress in any specialty in Medicine, it is necessary to take further specialist exams. In Hospital Medicine, the examination is Membership of the Royal College of Physicians, taken in two parts separated by at least a year. Of course you are now working as well as studying, so they are in some ways more difficult than student exams.
In January 1987, while working a one in two rota, I passed Part I of the exam first time. In January 1988, I took Part II, and passed the first written exam. The most intimidating part of exam, a clinical test, was a month later. Unfortunately I became ill during that month, and tried to take a very difficult exam while on intravenous antibiotics through a central line. I struggled to the exam through a snowstorm and blizzard, but I was too ill to perform up to standard and I failed the exam.
In June 1988, I took the exam again and passed. Whilst other people with CF have become doctors, nobody with CF has ever become a Member of the Royal College of Physicians before. I think the moment when I received my diploma, watched by one of the doctors who has cared for me over the years, and several of my teachers from St George's was one of the proudest of my life, and despite my innate optimism it was one I never thought I would achieve.
SETBACKS AND A CHANGE IN COURSE
In 1988, I also gained a position as Medical Registrar on a rotation in the West Midlands, which included a period as a Registrar in Chest Medicine at East Birmingham Hospital. I duly started work as a medical registrar at Good Hope Hospital in Sutton Coldfield. I managed to obtain a mortgage and bought my first house. I met my first husband, Laurence, at a cricket match while we were both playing for the hospital. After years of exams, I began to enjoy music and sport again.
Unfortunately in October 1988 I had a very severe bout of 'flu followed by a bad chest infection. I was admitted to my own hospital through Casualty when I was supposed to be the medical officer on call myself!. I struggled to get back to start a new job in as a Registrar in Chest Medicine at East Birmingham Hospital, only a week late. However during that winter I spent more time in hospital than at work, and it became clear to everyone that I could no longer continue in hospital medicine and I was forced to look at alternatives.
Public Health Medicine was very appealing. Public Health doctors do not look after the drains. They act as medical advisers to the health authority, helping them to decide on priorities, to assess health needs, to investigate outbreaks of infection, to plan health promotion and health education programmes, to decide on the best ways to spend their money to purchase health care, and to research the best ways of caring for people. They also use scientific skills investigate the reasons why diseases occur by looking for links with factors in the environment or in their family background.
I was accepted onto a training scheme as a Registrar in the West Midlands, starting at Central Birmingham Health Authority and moving to different places. Here I was involved in all the work needed to implement the health service reforms and I found the job very interesting and rewarding.
During my training, I spent a time working on attachment to the University. Here I found I could use my skills in chest medicine to investigate the role of air pollution in asthma and respiratory diseases, and I became interested in an academic career. My fellow students called me "Professor" when I was at medical school, so perhaps they recognised something in me that I could not see myself. I was appointed as a Lecturer in 1992.
I had to pass another postgraduate examination, Membership of the Faculty of Public Health Medicine. This is a written examination (four separate written papers) together with the submission of two 10,000 word dissertations on research about various public health topics. I was again the first doctor with CF to pass this exam, which I did at my first attempt, almost three years earlier than expected.
In February 1993, I was promoted to Senior Lecturer in Public Health and Epidemiology and Honorary Consultant in Public Health Medicine, the first person with CF to achieve Consultant grade. I spend my time doing research, writing papers and contributing to books, and organising and teaching on courses designed to teach medical students and postgraduate students and doctors on aspects of public health.
I have undertaken a good deal of research into the effects of air pollution on health, and am now involved in a large collaborative research programme into this area, which I have developed along with three colleagues.
In 1990, 1994 and 2000 I completed three studies of the way in which CF affects adults, and the way in which their medical care has changed. I was the main author of a Clinical Standards Advisory Group report in 1992 and again in 1995, looking at variations in care for people with CF in the UK, and which led to CF being designated as a condition requiring specialist commissioning of care. We started a similar survey for patients with inflammatory bowel disease in 1994.
Also in 1994, I was involved in the development of the Master of Public Health degree programme at the University of Birmingham. From humble beginnings with 12 students, this has expanded into a large programme with many optional paths of study, a Certificate and Diploma, some modules available by distance learning, plans for a specialist MPH in Health Protection, and a very high, and growing reputation. This formed the core of my work until I retired.
In line with my research interests, I was appointed a member of the Committee on the Medical Effects of Air Pollution, which I continued until 2001. I have also continued to help the CF Trust over the years, as a member of groups looking at infection control, clinical standards, clinical trials, and CF in health care professionals. I am still a member of the Research and Medical Advisory Committee, and the UK CF Database steering committee, and undertake research into the field of CF, particularly the delivery of health care.
VISITING AMERICA
In November 1993, I was lucky enough to be appointed to the Harvard School of Public Health as a Visiting Scientist in Environmental Epidemiology, and spent five weeks there investigating the relationship between air pollution and hospital admissions and deaths from respiratory disease. Here I also experienced some of the difficulties that American CF patients have obtaining medical care. I developed a 'flu like illness and an exacerbation of my chest problems while there. It took so long for my insurance company to give the go-ahead for my IV treatment that in the meantime I had got better by myself, with the help of some friendly physiotherapists.
DIVORCE and SETBACKS
Working in the West Midlands, I met my first husband, Laurence, during my first Registrar post. In 1996, out of the blue, after eight years together, after doing the Three Peaks Walk for cystic fibrosis, he walked out without explanation, and we were divorced in 1998.
This was a shattering experience, which completely destroyed my self esteem. I plunged myself into my work, and was struggling to live alone in my own little house with my three cats, Sprocket, Willoughby and Squeaker. I kept up my interest in sport. I reached a high grade at Tae Kwon Do before being forced to give up with a knee injury. I kept up with lots of other interests too - motorcycling, arts and crafts, reading, music, walking and wildlife.
Unfortunately, people with CF are not immune to things that affect non-CF people. In April 1998 I was riding my bike to a club meeting in Devon. I hate the motorways, and planned a route to miss as much motorway as possible. However I had agreed to meet two friends at a cafe just off the M5, so needed to go on the motorway for a short stretch. It was very busy because there were extensive roadworks at the Avon Bridge near Bristol. The road was narrowed to two lanes, then we were directed onto the hard shoulder. I spotted a sign for the exit to the cafe, and moved into the inside lane. The traffic slowed and stopped, with me at the back of the line.
The next thing I knew, pieces of my bike were flying past me, and I was slammed forward. A 24 ton lorry which had been following me down the motorway had not stopped, but just ploughed on into me and six cars in front of me. I hit the car in front then was knocked out to one side, and the lorry carried on hitting cars. It was obvious that my leg was broken in at least one place, and I was losing blood. The petrol tank of my bike had ruptured and was pouring petrol over me. My head was in the outside lane of traffic with wheels passing inches from my helmet. My left leg was numb and I feared spinal and nerve damage. I could not stop being a doctor - a man called Simon stopped to help. I made sure he did not move me, and that he made everybody extinguish their cigarettes. It was clear that I was not the only person seriously injured in the accident - people in the cars were not moving either. A doctor stopped and offered help - he said "I am a doctor" and I replied "so am I!". It took nearly two hours for them to extract me from the wreckage of my bike and get me to hospital. I was in a very bad way. I had broken my left leg above and below the knee, and the knee was torn open. I had also fractured my spine. I needed 5 pints of blood straight away, and spent 5 hours in the operating theatre before being transferred to Intensive Care. Over the next few days I needed two more operations and finally my leg was put back together with a metal frame called an Ilizarov frame. I was isolated in hospital miles from home, and friends were great, bringing my Mum down to visit and coming in to cheer me up.
Everything was painful. I had to lie flat because of my spine, and every movement was painful. My chest was surprisingly resilient, and apart from needing oxygen after the operations, I had no problems. But I lost a lot of weight - about 10kg in just a few weeks. After three weeks in Bristol, I was transferred to the CF team at Heartlands, and they gradually got me up and walking with crutches. Once I could look after myself, I could go home.
Initially, everything was a nightmare. I was taking seven different painkillers just to make things tolerable. I could only walk a few steps. I was exhausted and sleeping most of the day. I was so thin that I was getting pressure sores. Worst of all, my sick leave entitlement at work was running out and I had to go back or have my pay stopped. I extended my leave using up all my holiday, but it was not enough.
The effort of will it took was enormous, but I did every exercise I was told to do, every treatment that was recommended. I stopped losing weight. I gradually learned to walk with crutches, then a stick, then no stick at all. Three times a week I had physiotherapy in the gym or hydrotherapy pool. The minute I was able to sit up and talk, I started work again. I even held a meeting in my hospital room! I struggled back to work just eight weeks after the accident, although it was agreed I could do some of my work from home.
It was a nightmare. I needed help to do everything, but of course there is no help for young people at home - only the elderly. A friend took me shopping. I hired a gardener. My cleaner came in more frequently to help out. My Mum cooked meals for me. I sold my beautiful sports car and bought a much more practical automatic car so I could drive with my good leg, and get to work. I even put my lovely house up for sale, knowing I could no longer manage it.
But, I struggled on and by eighteen months after the accident, I had made a very good recovery. I could walk without a stick, and was working full-time. I was still in a lot of pain, but it is diminishing as the years go by. I am getting out and about with friends, and most of all, I can see the light at the end of the tunnel. I recovered as fast, if not faster, than most people without CF. I think my experience with dealing with CF over the years has helped give me the determination to get over this injury, and back to work.
Most of all, I am determined not to be put off riding motorbikes. The accident was bad, but it was bad for the people in cars, they were badly injured too. Why should a lorry driver who didn't pay attention rob me of one of my major interests and source of pleasure? A year after the accident, I got back on my motorbike, and for years rode it to work every day. Eventually I managed to get back to doing a lot of sport. I was determined not let this ruin my life. Bad luck should not rob me of my life, or my fitness, or of the contribution I still have to make.
BETTER NEWS
This accident wasn't the end. After I had made a real effort to get fit, I was wondering how I would ever meet anybody else with whom I could share my life. I was either working, at the gym, or sleeping! Although I was an active member of motorcycle clubs and had an active social life, the right person never seemed to come along.
Then at the end of 1999, I was idly flicking through the pages of the local free newspaper when my eye fell upon a personal ad. The guy who'd written it seemed so charming, and lovely. I felt I had nothing to lose so I replied. I met Stephen, a software engineer from Tamworth, for a meal, and we spent the Millennium Eve together. Over the next couple of years we became closer and closer and eventually I sold my house and moved to Tamworth to live with him. On my birthday in 2001, he asked me to marry him, and in April 2003, we got married at the Belfry and had a honeymoon in Mauritius.
A FULL LIFE
We are now very happily married indeed, living together in our little house and enjoying our cats, and our common interests. And we've got another sports car - this time a nice little MR2!
Aside from work, we are both interested in motorcycling. We are members of two motorcycle clubs (Ixion and Quick Quacks - a UK based motorcycle club for doctors that I help to run), and we both enjoy motorcycle touring and track days. In 2003 we studied levels 1 and 2 of the California Superbike School, and in 2002, we both completed NVQ Level 3 in advanced motorcycle riding with a police instructor. You can't get too many skills, and I think both courses have been extremely valuable.
We have recently had a house extension built, and a pond, and we spend a lot of time decorating the house and getting the garden into shape. We love car rallying in our 30-plus year old Mini Cooper S. Stephen has taught me how to do welding, and we both love tinkering with things in the garage. I also love painting, drawing, embroidery, and anything else artistic. I still play the piano.
We both enjoy keeping fit, and sport has always been central to my life, and treatment of my CF. We both enjoy step aerobics, attending several classes each week. I also do weight training (general weights and BodyPUMP), and kickboxing. I also do a huge amount of cycling, riding 20-30 miles three or four times a week, and occasionally doing 40, 50 or 60 mile rides. We love walking in the local countryside, skiing, inline skating and just about everything active really. Our winters are taken up with skiing, which we both love.
Stephen is extremely supportive of me, and doesn't think less of me because of my CF. He helps whenever I need it, and backs off when I want to be independent. He has learned to mix up IV's and mix up my nebulisers, and gently nags me to do my treatment.
COPING WITH WORK
I have always tended to work too hard to compensate for having CF. Now performance management means you are held to account for reaching certain objectives in a set time period, I try and reach my objectives as quickly as possible in case I need to take time off sick. I feel vulnerable because when people are seeking to cut staff, the first people to be considered are those with a poor sick leave or poor performance record. I also feel very guilty if colleagues are put under pressure to cope with my work when I am off sick.
However I tend to do more work than I need to. If you achieve your objectives in 6 months, you have to do something for the rest of the year! I try and get back to work too soon after being ill, and drive myself too hard, and the cumulative effects of this lead to exhaustion. One year I had to have two months off to recover from what should have been a minor illness because of the cumulative effects of stress and chronic exhaustion.
In 2001 I reduced my working hours to three days a week, maintaining my responsibility for the Master's degree, but reducing my research activity. This helped enormously, and my health improved quite significantly given the extra time I had to keep fit. However in 2005, I became seriously ill again, and having spent a lot of time in hospital following two bouts of pneumonia when I was coughing up blood, we all decided that it would be better for me to take ill health retirement from work. Indeed, although I tried to return for a period of time, it was not possible for me to catch up the work I had missed, and I just became ill again. I finally retired on 1st April 2006. Since I am now 49 years old, and had intended to retire at the age of 50 anyway, I think I have done quite well to keep going as long as I did. I still do work on an honorary basis for the University, but now it is all much more under my control.
Since retirement my health has improved immeasureably, and I have increased the amount of sport and exercise training I have been able to do. This year I completed a 100 kilometre bicycle ride, and find I can ride with a group of fit and healthy people without holding them up too much. I have also completed a half-marathon. Stephen and I now both work part time, so we can share more time together and concentrate on building up our new joint business venture (manufacture and sale of security products). Reducing the time I take to commute to work, and reducing exposure to virus infections on buses and trains has also helped my health, and in general I require only 1 or 2 courses of IV a year. My FEV1 is still 70% predicted, even at the age of 49.
My health is normally good, and I can keep up with Stephen in most of our sporting activities - he's better at skiing than me, but I can ride my motorbike a bit quicker than him! I doubt that many 49 year old women without CF could do an hour of Tae-Kwon-Do training, or swim a mile non-stop, or do an hour of kickboxing or power-step, or ride 100 kilometres on their bicycle. I try to spend 8-12 hours a week keeping fit.
Because of my longstanding interest in sport and fitness, I had always wanted to train to be an aerobics instructor. I finally realised this dream in 2007, when I qualified in Exercise to Music and Step. This gave me a taste for more, and I really felt driven to help others find health and fitness through exercise, as I have done, particularly those with chronic ill health. I enrolled on a Personal Trainer diploma course, and have now qualified as an advanced fitness instructor and personal trainer, with special qualifications in older adults, ante/post natal, and GP referral. Along the way I have also qualified as a spinning/studio cycling instructor, Boxercise instructor, Nordic Walking instructor, and have completed the first stage of training as a BodySTEP instructor too. These are demanding jobs for fit people! I work a few hours a week, with the advantage that my work now helps as part of my own treatment, by keeping me fit, and because I am freelance, I can control how much work I do. I do a few hours in the gym with clients who have medical conditions, have a few personal training clients, and run nordic walking classes locally. I also teach two Step classes each week. I get a great deal of pleasure seeing people with illnesses or very poor health start to take control and achieve better health and fitness through exercise and activity. Passing on my experience is one way I can continue to contribute.
In May 2008 I also took the first step towards being a ski instructor - passing the BASI Level 1 course at Tamworth Snowdome. In due course I want to take my Level 2 qualification, and help people learn to ski at the Snowdome.
Sadly in February 2007, my Mum died of kidney cancer, aged 77.
THE FUTURE
It is difficult to know what the future will hold. It is sometimes difficult to plan for a future that as a teenager I was always told I would not have. It is hard to think about investing for your retirement when people still give you the impression that you will not live long enough to have a retirement. At least now I am reaping the rewards of this investment.
There are always new challenges, and new goals. I will certainly not rest until people with CF in this country have access to the best care for their condition, whatever their age, and wherever they live.
IF YOU DON'T TRY.....
Certainly I have enjoyed my share of success, although not without some heartache. I have been lucky to be quite mildly affected by CF, which has allowed me to pursue my goals, and achieve what I have. I have also had great support all the way from people connected with CF and the CF Trust. Indeed, I have always dedicated my life to everyone with CF, and their families, and feel that they should share in my good fortune because they have all been so supportive.
But I don't believe what I have done is particularly exceptional, although it may be different. Many people with CF have achieved academic success, sporting success, and are living full and productive lives with jobs and families of their own. These prospects are increasing thanks to advances in medical treatment. My message to people with CF and their families is this: whatever you want to achieve, be it simple or grand, you will not achieve if you do not try. If you do not succeed, you will have the satisfaction of trying, and have gained by the experience. I hope that, above all, I will be remembered as someone who tried.