25/03/2010 |
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The Recovery Room
Welcome! This page contains stories of recovery from some of Dr.Smith's patients and others. (Their names have been changed to protect their privacy)
The one that says it all (a letter received recently by David Smith accompanied by some flowers) - the text reads as follows in case it is not clear - " Dear David, no words coud ever express how grateful I am to you. You will always be in my thoughts as you are the man who gave me life back. A million thanks yous love xxx"
Gillian writes: “I am also one of the lucky ones” I became ill, and just could not get better. My doctors were wonderful, very caring and concerned, but did not know what to do, as I had many complications with my medication and allergic reactions, and so on. My sister came with me to our doctor and, whilst we were talking and trying to make sense of why I was ill all the time and not getting even slightly better but worse, my sister said to our doctor, "What about ME?"; we had looked it up on the internet and I ticked all the boxes. Thankfully our doctor said, "Well why not? I know a very good doctor and he is NHS", and right away wrote a letter for an appointment. Within two weeks we had the appointment. This wonderful man has given me back my life, he has made me understand why I have ME, and that the most important thing is to respect the illness. ME is not an illness you can fight; you have to understand it and go with it. It is quite amazing when you get to understand ME, all the ‘why's’ and ‘wherefors’, and how it is treated, as it all comes from the brain. This wonderful man (Dr Smith), has been researching ME for over 20 years. I have so much respect for him. He is fascinating to listen to and when he explains ME You can see how he cares about his patients. He explains so much so you can see and understand why you have ME. Unfortunately quite a few of his patients do not want to help themselves to get better, and expect medication will help them, but it doesn’t, and then they wonder why they are not getting better. On our first visit to Dr. Smith he explained so many things, asked many questions, and then saw a pattern, so to speak, of the ME. The main thing was to rest. At first I was told I must not watch TV, read, (which is something I love) no crosswords or word games, (something else I enjoyed) no Scrabble or card games, ( I played Bridge twice a week); all this had to stop. I should not go to the cinema or the theatre, and give up the computer lessons that I had just started; in fact anything that worked the brain. I came home and was really dumbstruck and very low because of all the things I could not do; things that were part of my life and I loved doing. How on earth was I going to cope doing nothing but rest completely all day? I was in shock! I did persevere. At first, it was very hard to get into the routine as I am not someone who sits and does nothing. I am always running around. There were never enough hours in the day for me. Dr Smith advised me to get Audio Books. I started getting the Talking Books from my library and learnt to love them. My library is fantastic; the people are so helpful. They go out of their way to get me books from other libraries, and are so caring, always asking me how I am and telling me to take it easy etc. Yes I have had a few setbacks by overdoing it a little, or doing a crossword when I should not, but I soon realise why I feel a little pain or flu like feelings, because I have not kept to the routine, and I should not have done the crossword. I am trying to prove to myself that I can, but my brain tells me I am not ready, and then I get annoyed at myself, because I should listen to Dr Smith, and not think I am up to it. But like everything else in life - you learn. I still have quite a way to go, and I will get there as I do not want to let my family and friends down. They have all been so supportive. Most of all I do not want to let Dr Smith down as I feel that I am so very fortunate to have been able to go to him. Whenever I feel a bit low I go and look at Dr Smith's notes, and they really help me. There are still many many doctors who do not believe ME exists, which is so unfortunate for people who genuinely have ME, and it is not recognised. Only other ME sufferers can understand how they feel and what they are going through. On my first visit to Dr Smith, I noticed a Club Newsletter, (Get Well Club), which is for patients and former patients of Dr Smith. It is such a great newsletter, informing you of how other ME sufferers cope, giving information of other Professors and Doctors who research ME, very informative if you need advice or assurance. They have volunteers (ME sufferers who have been through all this, and are now thankfully better), to give you help and encouragement. A truly wonderful and informative Newsletter. I am so grateful for being a patient of Dr Smith. Yes, I am one of the lucky ones. October 2007
Esther’s mother writes: Esther was treated several years ago. At that time she had been diagnosed for around 3 years but was receiving no treatment or help whatsoever. She was no longer able to attend school and was about to take her GCSE's, having been receiving 4 hours a week home tuition. She is about to graduate from the University with a B.Sc. (Building Surveying) and is aiming to return next term to commence her Masters in Facilities Management. She has achieved this on a day release basis and has been working for the past two years. Prior to acceptance at University she spent two years at a local college and obtained a National Diploma in Construction. She has travelled to Australia and New Zealand (twice), the West Indies and Canada - a trip in the car used to tire her for days. None of this would have been possible but for Dr. Smith, his treatment and the kindness and compassion that he showed towards both her and her family. She has learnt to pace herself, to prioritise her workload and social life - like Scarlett O'Hara, "Tomorrow is another day - I can't afford to think about that today". So, I will say Thank you, Thank you, Thank you………. July 2005.
Nel writes I had been ill for approximately eighteen months before I was referred to Dr. Smith. I came down with Glandular Fever in January 2001, although looking back, I had already been experiencing the first symptoms of fatigue a few months before that. I was completing the final year of my ‘A’ Levels so stress was rife! My condition gradually deteriorated to the extent that, although I was able to complete my exams and gain the necessary grades, I had to postpone going to University. In the following months, before I had even heard of Dr. Smith, my activity declined to days of lying horizontally in front of the television and crying in desperation when it was necessary to leave the house. In July 2002, however, my luck and indeed my condition was about to improve, as I was referred to the respected expert in Essex. Dr. Smith’s recovery programme came as a great shock to me, as I had never heard of any such cure for this condition. I followed his advice and with a great deal of encouragement and support from him during the following months of hardship, of having to give up almost every thrilling aspect of one’s life, I am now fully recovered. I followed his regime for a little over a year and was discharged from his care last November. Since then I have been cementing my recovery. I returned to my (amateur) dancing classes and can now enjoy the full two hour dancing lessons. The school recently put on a charity dance event, for which I learnt several dances, ranging from tap, ballet and contemporary. It was a great success with the whole school of about a hundred dancers, (including our teacher), of ages ranging from five through to fifty, taking part. Furthermore, I now have an active social life, do a few days voluntary work within the offices of Crisis (a national charity for the homeless) and am looking forward to beginning my study of English Language and Linguistics at Sheffield University in September. Dr. Smith not only taught me how to recover from CFS: he equipped me with the invaluable knowledge of where the illness originated inside me. Therefore, I left feeling confident that it would never return. It’s been an interesting few years, for which I certainly had not planned, but with Dr. Smith’s help I now have never felt so alive! October 2004
A Cautionary Tale from Margaret Twelve years ago, I was diagnosed with CFS. People sometimes ask me if I am completely better now. I used to tell them - “Yes - and no. Yes, I am vastly improved: this week, I wrote an article, worked on a screen play, helped out at a friend’s theatre performance, attended a writer’s circle and went to a birthday party. But I can’t do what I used to be able to do” That is what I used to tell them until a thought struck me: very possibly, nobody is able to do what I used to do – and live. I am a ‘do-er.’ Before I got ill, if something needed doing, I was up doing it. If a child in the street dropped its rattle, I would be the one to rush over and pick it up. I got a huge kick out of ‘doing.’ Then I got ill. For three years, I couldn’t go out in a wheelchair unless it had a head and foot rest. Then I saw Dr Smith and began my slow but steady recovery. So if you are a do-er, remember that you may have a will of iron but you have a body of flesh and blood. Respect it. Look after it. And it will look after you. Margaret December 2003
Tony was hit very hard after a bad dose of flu and was quite unable to look after himself. Four years on he writes:- ”Earlier this year, I went on holiday with John, who is another of Dr. Smith’s former patients and who is now enjoying a normal life. He had been ill for about three years before he saw Dr Smith and has made great progress over the past four years. He is back at work and is just starting a new job with a different insurance company. He is also very active with a golf handicap of six and also swims and runs regularly. The aim of the holiday was to relax but also to do a lot of activities. We went to Italy for a week, on an all inclusive holiday, where one could go waterskiing, windsurfing, sailing, play tennis and participate in other activities including water polo, the latter being very hard work. We both had tennis coaching each day for an hour and, now, have got to get in some practice to get used to the new things we have learnt. There was also plenty of time to socialist with the other people in the resort, which was good practice for us both in getting out there and meeting new people. I had not appreciated how difficult this can be when one has spent a lot of time in one’s own company over a long period. The important thing is that one’s social skills do come back and the more practice one has, the easier it becomes. Although both of us had not done a huge amount whilst we were ill we both felt that, as characters, we had matured and had been strengthened by the experience. What the holiday has shown to me is that I can do all the things I want to do. If I get the balance right between work and play then the sky is the limit. James would concur with this. We both had a great week away. I am back in the office every day which is very dull in comparison. I am very thankful that I had the good fortune to be able to see David Smith and that by sticking to his principles one can lead a normal life again (but with a more relaxed attitude to it)! October 2003
Yvonne was referred to Dr Smith in 2001. "The good news is that, 2 years on, I am doing really well. I'm not exactly 100% back back to my old self yet (and I'm still not working), but I'm able to enjoy a full life again and I have lots of exciting plans for the future." "I've just completed a part-time teaching course to gain a qualification in teaching English as a foreign language. I'm engaged to an Italian guy and I'm finally feeling well enough to make the long awaited move to Italy. I'm hoping to leave the UK early next year - the exact timing depends on how long it will take me to get my house packed up and rented out. I'm going to be taking this at a much slower pace than I would have attempted before my CFS!! We have the wedding planned for May 2003 so I have lots to organise on that front too! It will be a busy time and a good test of my new health and what I have learnt about how to keep it!"
September 2003
A visitor to the website from the Southern Hemisphere writes -
My name is Ross and I live in South Africa
.
November
Carol didn't quite make it. An 'A' grade student, Carol gained a place at Oxford to read History. During her first year she caught 'flu but kept studying. By the end of the year she could study no longer, suffering the classic symptoms of CFS. She moved out of her parents' home after finding the pressure from her workaholic father to 'keep on doing' too much to cope with. After two years of illness she was referred to Dr.Smith. Living in a top floor flat with, sometimes, noisy neighbours, Carol found it difficult to stabilise her illness and it was several months before she was able to start increasing her activities. After some considerable time she was well enough to enrol at the local college to take an 'A' level, which was eventually to be her undoing. Fired with determination to do well she spent too long trying to perfect essays and got into panics if they were not up to scratch. She found her symptoms returning with a vengeance and eventually had to give up her college course. Carol then contracted Shingles, which laid her low for several months and in between an increasing number of subsequent minor viral infections she managed to climb back up again to be able to do a voluntary daily half hour stint helping in a local infants' school. After over a year doing this and being unable to increase further the time she spent 'at work', Carol left. Her Landlord then decided he wanted to sell her flat so she moved back in with her parents. The last we heard she was working a few hours daily in a local delicatessen.
September
Cherry was fifty-eight when she became very ill. Glandular fever led to hepatitis and jaundice, eventually leaving her with ME.
"Luckily my doctor referred me to Dr. Smith
after only a few months of being ill. My first visit lasted
"At first I tried to carry on as normal until I realised I had to stop completely before I would start to get better. I was put on tablets to make me sleep at night and I started to delegate jobs. I couldn't hold a conversation, answer the telephone let alone do a days work. Eventually Dr. Smith said I could start taking Prozac - I had heard such terrible things about the drug so I was worried. Dr. Smith reassured me it could be taken in liquid form and is carefully regulated. As the Prozac was increased I was able to do more. With my ME I had a pain over my heart. Dr. Smith said 'Work until you have the pain' - that was my warning not to do too much. "Over a year I completely altered my life style and cut my workload and I responded to the treatment. "At last Dr. Smith said I could start decreasing the Prozac by two drops a month (as far as I can remember) and it was by this method one could reduce the medication by such a little that the body didn't notice. "I was still told to work until I got my pain but gradually I found I could do more. It took months to be weaned off the Prozac but I'm sure this method of medication was the reason for my successful recovery.
"I am now
October
Robert writes:
"I've just come across your website after one of my regular checks on
David Smith's Website. My daughter, Sally, suffered from ME/CFS from
the age of
"Simultaneously, the consultant paediatrician treating Sally went to one
of Dr. Smith's lectures and was keen to try the treatment. We jumped
at the chance because nothing else we'd tried had come remotely close.
Sally's consultant put her on the antidepressants and then prozac.
After only
"Now
August
Barry was a busy schoolboy at the local Grammar School in October 1987. "I was in the choir, three orchestras, Captain of the school shooting team and, oh yes, studying for eleven GCSE's. In the half-term I got the flu' and struggled back to school after about three weeks, but the more I tried to catch up the worse I felt. I got a bit better over the Christmas holidays and put all my energy into my mock exams, which went surprisingly well considering my three-month absence from regular school. After that I went downhill quite badly, spending most of the day sleeping in bed and feeling absolutely awful. My condition worsened for the next two years. In this time my parents tried pretty much everything from healing to acupuncture. Most helped for a short time but the symptoms persisted. I went to Dr. Smith after being unwell for nearly three years. I followed his advice in building a personal program to slowly increase my mental and physical activities, week by week. I had a physics tutor who came in once a week and I learnt to walk again with the aid of riding lessons with Riding for the Disabled, to strengthen my wasted leg muscles. This program progressed for a year until I was ready to go back to study for my GCSE's at the local Sixth Form College (who were absolutely terrific). I only did six in the end but the next year I fulfilled the ambition I had had for a long time. Firstly, I managed to get into the Sixth Form, at last - four years too late but better late than never! Secondly, I got my Private Pilot's Licence! The Civil Aviation Authority insisted on no less than nine thorough medicals before I was allowed to fly solo. It had been my ambition to become a commercial pilot since the age of seven and I had joined the RAF as a cadet before becoming unwell. Despite everything it remained my ambition to beat my illness and to achieve my dream, although at times there did seem to be little hope. After my A Levels, I went to Cardiff University where I gained a BSc.(Hons) in Business Administration and took part in many extra-curricular activities which also included starting my own society to visit places and organising walking and canoeing trips from as far apart as Swansea to Amsterdam. Oh yes, a certain amount of going out and one or two drinks were consumed along the way! In my final year, I applied for sponsorship from a few airlines and, after some tough interviews and aptitude tests, I was offered a sponsorship by KLM (UK). This included becoming a flying instructor for two years at Biggin Hill. I have now been at Biggin Hill for the last six months and have been the busiest flying instructor for a couple of them. At present, I am on a trip to Holland, where I am writing this, but so far I have visited France, Spain, Morocco and Wales as well !! So, how did I get here? Well, I believe there are two reasons. Firstly, I had terrific support, especially from my mother, so when I needed to rest I could do so; my only commitment was to myself to get better. Secondly, I had a goal. I'd never heard of anyone getting better but I was determined not to be beaten by my lot. I aimed for a job where I didn't just need to be ok - I needed to be healthy and well and I could not afford to have a 'bad day' or a relapse. So, am I fully recovered? Yes, but I have had to learn to adjust my lifestyle wherever appropriate. The real test for me was my first term at University when I became quite unwell and I picked up every cold and virus around. I realised that I couldn't continue that like and I found my level by eating sensibly, working sensibly (well, a bit anyway) and playing sensibly. If I did go out all night I couldn't go in next morning. I had to get a good night's sleep. It is now the same at work. I do make sure that if I have had a busy week I have a quiet weekend to catch up with myself - but that's normal isn't it?!
December
Anna had been ill for ten years before being diagnosed with CFS. "For most of that time I had led a ‘normal’ life, even though I couldn’t plan ahead very much as we never knew if I would be up to it by the time the day arrived! I was very up and down – it seemed that about every six weeks I would get glandular fever symptoms (it was glandular fever that I had suffered with right at the beginning) which would clear up after one or two weeks’ rest. Then I went on holiday to Kenya and had a few vaccinations, which were required, as well as taking anti Malaria tablets. Big mistake! I didn’t feel quite right while we were away and felt much worse once we had returned to the UK. The following year was spent visiting various Doctors and feeling dreadful. I was away from work more than I was there! Finally I got to see Dr. David Smith who told me I would be up and running again within two years if I committed myself to his programme. It took a few months to get my CFS under control and I found it very frustrating limiting everything I did, but as the months unfolded we began to see an improvement. Soon I was able to take a bath every day – as long as someone helped me to wash and dry my hair. I began spending less time in bed during the day, a little longer chatting to friends, a bit more reading, a bit more music and soon a year had passed. I began to improve very rapidly then and I found it really difficult to hold myself back! Twenty paces from the front door turned into a five minute walk, soon building up to a whole twenty minutes. I began pushing my wheelchair around the shops (and loading it up with purchases – good for my self-esteem, not so good for my finances!)
Two years have now passed since my
consultation and I am a different person. I have started working again –
part time and local. I watch a whole TV programme at once with no ill
effect. I have bought a house with my boyfriend, which we keep fairly tidy
(!) I’ve even helped with the decorating. We have bought bikes. We only
cycle for ten minutes at a time but I will soon build that up. And best of
all, I have been on a Girls’ Night Out to a pub, then on to a night-club
where I danced for a whole two hours, arrived home at
October 2002
Jane had gained a Degree in Chemistry and, in 1994, had started studying for a PhD when Chronic Fatigue struck following a virus. "I was very fortunate to meet David Smith at the end of 1995. For mosts of 1996 I lived my life with a stopwatch, gaining control over the CFS so that I could start to increase my daily activities. By January '97 I had made enough progress to be able to start working as a volunteer for my local Citizens' Advice Bureau (CAB) for two hours a week. I gradually increased my hours and, at the beginning of May '97 when the admin assistant left, I job-shared for an adviser, working initially for ten hours a week and increasing to twenty. "After a couple of months, to test how my brain power had improved, I started a computer course in the afternoons, to brush up on my skills. Once I'd finished that I started to train to be a CAB adviser and took on a City and Guilds Stage 1 in Adult Teaching. In march '98, when I had finished my adviser training and basic teaching, the CAB decided to increase my hours to thirty. By July '98 I was working for four days a week for the CAB and one day a week as a freelance IT consultant for our local National Association. In April '99 I had a promotion and now work full time as Administrator/Technical Adviser for my local CAB. In summer 2002 I have gained a Diploma in Management Studies. "I've told you all this because, when I started seeing Dr. Smith, I was only able to concentrate on the computer for ten minutes at a time and could only cycle for two and a half minutes. I am now living a normal life. The first stage of recovery was relatively slow but I hope you can see that from June '97 my recovery started to take on a much faster rate. So if you are at the bottom end of the curve trying to control your illness and slowly increase your boundaries the motto is - "Things can only get better!" September 2002
Richard was eight years old when he suffered a severe attack of tonsillitis. He recovered after a week of antibiotics but the infection returned for 24 hours. Over the next few months he experienced an increasing amount of time off school with sore throat, tummy ache, nausea, dizziness, severe physical exhaustion and nightmares which left him sweating and disorientated. Over a period of two years this worsened to the point where Richard could only manage two lessons in school for a couple of days a week. I pressed our GP for a referral to a Paediatrician, who, coincidentally, had recently been to a lecture by Dr. Smith. Dr. Smith had Richard assessed by a Psychologist to determine the damage to his cognitive function. This turned out to be quite severe. A small amount of antidepressant was prescribed. We embarked upon a programme of mental and physical activity and had the services of a Home Tutor from the local EA until, seven months later, Richard returned to school for two lessons a day. In our case, this is the point at which Richard's recovery slowed down. We later discovered that this was because he was being subjected to mental and physical bullying by his peer group. We had asked him if he wanted to change schools at the time of his return but he was quite sure he wanted to stay put. We eventually parted company somewhat acrimoniously from his prep school and sent him to a co-ed school. By this time Richard was attending school full time but his confidence had taken a hammering. He took a year to settle in his senior school and so repeated Year 9 but since that time he hasn't looked back. Richard is now twenty-six, has been to university and is now a Media Designer with a big firm of Consulting Engineers. He gets married in 2010. He has suffered no adverse effects whatsoever from taking antidepressants. We could not have reached this stage without Dr. Smith's expertise and tremendous support. We have had to fight some battles with school personnel along the way and Dr. Smith has been right behind us every time. We shall be eternally grateful to him. December 2009
Laura writes:- Christmas 1991 when I was 37 my husband, David, and I went to Ireland to a lovely country cottage and I came back with flu. I wasn't desperately ill with it but just had the usual symptoms plus massive tiredness and basically took to my bed. After a few weeks I was diagnosed by my G.P. with post viral fatigue and was sent home to rest. After about 2 months a colleague I knew slightly from work phoned 'out of the 'blue' to say 'you must contact Dr David Smith in Essex' - I think you've got ME and he got my friend better. It's important you see him sooner rather than later as you stand a better chance of complete recovery.' So I wrote to Dr Smith and saw him within a couple of weeks. The brilliant thing for me when I met him was that he told me that he could get me better provided I did everything he asked. So I did and I was significantly better in 12 months to the point where I was able to run the house and work 2 hours per week at the Citizens Advice Bureau. I took a course in the next few months to brush up my computer skills and at the end of 2 years of illness I went back to work as a temporary secretary at the University of Surrey. I worked 12 hours per week which gradually increased to 25 hours per week and then I changed jobs and had probably the best job of my working career. After 3 years I left to have a baby (I was 44 yrs old) – our son is now 8 years old and I'm looking after the house and running a bed and breakfast business. In a nutshell: Dr Smith got me better by a gradually increasing activity programme (to start with 2 minutes of activity every hour and ending with 25 minutes of activity every hour by which time we all agreed I'd cracked it) plus a course of anti-depressants for six months which sorted out the bad sleep pattern. He also provided the much needed barrier from a doubting world. For me that was incredibly important. The lack of medical information about the illness opens the door for cynicism and people feel able to bandy about the word 'work-shy' . I had the constant support of my husband and also my mother who came to live with us for the first 12 months. And so I existed in a protected bubble for 12 months and recovered. The stress of life had been removed and gave me room for recovery. It was vital to follow the activity programme 'to the letter'. Anytime I even slightly deviated from it I relapsed. I recently was asked by a friend to chat to some health support workers in the town where I live and I was appalled to learn about people who have had m.e. for 20 years. I said all that I could in support of Dr Smith's activity programme and presented myself as proof that it works. I learnt a lot about myself in those months/years of recovery and now reject the stressful life that I led before my illness and although I work hard now I am doing pretty much what I want to do and am not allowing my life to 'lead me by the nose'. 2006
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