Pictures that tell the story of my recovery from ME/CFS



twobefore_2.jpg

June 1979 - A highly unflattering photo, taken five years before onset of ME. I have overcome my blushes to include this because under my eyes there was a visible white "gap" . I have since found out that it can indicate immune problems.The first sign of ME/CFS in me was losing the feeling in my big toes (parasthesia) a year before onset. A doctor recenly told me that his first symptom was the same. After this, I reacted badly to vaccinations to go to North Africa. I already felt wearied by stress from high pressure University exams

onebefore.jpg
May 1983 - Nine months before ME onset, I had an acute virus infection which I struggled to throw off. I was surprised that I felt it was quite such a struggle as I had previously had a strong immune system. Some doctors now think that a virus infection 9 months before ME onset damages the brain and immune system and that after that one starts gradually "going downhill". On top of this I was taking low grade antibiotics for a skin problem. I became very pale over the next few months and felt vaguely "unfit", with groin pains. I thought I just needed more exercise to get fit. In fact, this "going downhill" was the "run up" to chronic illness. I had had heat exhaustion in the Sahara and numb toes from some time back (parathesia is the first sign in some people of ME). By the way,,my skin problems disappeared when I stopped eating wheat and cut out sugar.
garden.jpg

August 1984 - Three months before onset, I was beginning to feel unfit and looked very, very pale ("white as a sheet"). I was feeling drained at this point. I felt I was not fit enough to think through the stresses in my life. I was in internal stress about various things, particularly aboiut my sense that love, truth, beauty, faith and spirituality in Europe was dead (I later revised this idea) . I think at this point I needed some kind of wise "spiritual mentor". But actually, I was not coping well with stress because my body was weakening, not because I was mentally weak. I was a newly converted Christian. I did not know that one should not "jump to conclusions about what God" is doing, in a wider context. "The lesson is: never despair! You cannot see the long view. Hold on and relax."

me02.jpg

August 1985 - Nine months after onset. I cannot describe how I felt in this photo. I was in a sunken place of death, deep pain and malaise which never ceased, as in the worst kind of 'flu. My brain had terrible, unstable, drunken feelings. I had lost a stone in weight. I could not speak, relate or write properly. I spent almost all my time resting, lying down. I had panic attacks for no logical reason.. I was often dizzy and in a hot sweat, but my temperature seemed subnormal. My back was in acute muscle pain and I felt "on another planet", totally isolated and disoriented with a constant, raging, sore throat. My tongue was coated and had crevises in it (this was caused by the acute candida infection in my whole digestive tract, also causing the sore throat and much of the fatigue). I did not feel the same person. I felt 140 years old (which was the effect of illness, not age) and I envied the energy of people I knew who were 80 and travelling the world! My DNA felt damaged. Internally, I was fighting for any future. I recall feeling as ill as AIDS sufferers looked. I could not smile as the facial muscles were gravitating downwards as if invisible lead weights were suspended on them. My eyes were "dead". Who was this person? Had I died? I felt as if I was seeing the world after I had died. A terrible, terrifying experience. I now realise that the soul is separate from the brain. "I" had not died. My true self was safe in God. I sensed that if one has a personal relationship with Christ, He "survives" the illness for us and carries us through the Valley of the Shadow of Death in His loving arms, keeping our true selves safe from any diminishment or harm.

me01.jpg

August 1986 - Two years after onset I was still fighting for my life. My memory and brain still did not function properly. I had lost whole bodies of knowledge and memories. I could not write or type properly. I sang out of tune, which was a sign of brain damage and most disturbing, as I have a good musical ear. Happily, this has completely recovered. I had had a year on Nystatin to kill candida (after initial, acute "toxin die off symptoms" which nearly made me kill myself - one just lowers the dose and then carries on taking it) and then garlic which works, too, on yeast infection. I was putting myself through my intensive detox, high raw dietary regime (see recipe pages) and having private allergy treatment (which is only successful in 1 in 4 cases of ME/CFS). This was treating my wheat/food intolerances and artificially creating batches of T-suppressor cells to treat the white T cell ratio problem in my immune system (which, after a time, my own body learnt to correct itself). Dr Jonathan Kerr at Kings College London has now discovered that 16 genes affecting the white blood cells are abnormal in ME/CFS: When I had these T cell treatments every eight weeks, they had a dramatic effect on my brain and other symptoms. I went from complete collapse, unable to think or speak, to standing up and chatting, feeling I had some energy, all within half an hour. I managed to smile in this photo, but I still did not care what I wore or how I looked. I thought I had aged so much that caring would not make a difference anyway! I knew I would be better when I cared about what I put on in the morning.

gettingbetter.jpg

October 1988 - Four years after onset, I knew I was turning a corner because I could finally smile again! The lead weights had gone from my facial muscles. The light came back to my dead, "alien" eyes. I was on the intensive high raw diet but I was still very weak, mentally and physically. I could speak again at the right speed (not like a zombie) but I was still not "myself" in terms of the old vitality. I could read quite a lot by now, without completely exhausting my brain. I could still not bear any bright lights, too much sensory stimulation, loud noises and violent films made me ill. I was starting to be able to type again, accurately, and writing many newletters for our national groups of ME patients which by now were not filled with typing errors. I am convinced that no one should sit examinations, during the acute phase of ME/CFS - yet schools make children do exams. ME/CFS is severe brain damage.. It was about this time that I ran for a bus carrying a bag of shopping. Muscle exertion can kill you in ME and I nearly died. I collapsed two hours later and could feel myelf slipping into unconsciousness. My friend Helena, a trained nurse and ME patient, was with me, and recited the 23rd Psalm over me which had a remarkable, healing effect. She has always said since "You were going at that moment". I was saved by the Bible!

sevenafter.jpg

July 1991 - I am on the right, my mother is on the left., Suddenly I looked fitter, younger and more alive. Astonishingly, the age lines had suddenly disappeared. As the face muscles regained strength. I could stand up straight again. The dreadful, wearying, unrelieved "malaise" and pain of ME had gone. I no longer felt 140 years old. My brain was still a bit "fuzzy" and I took things cautiously and carefully but I could type again and sing again in tune (though I took that easy as the breathing involved in singing is affected by ME)). I was working part-time but rested a lot at home. I had battles at work over lowered lighting and needing to face a wall as I could not bear stomulation. This photo was taken going to a country ball, seven years after ME onset. The detox, high raw diet was now showing results.

nineafter.jpg
unrelieved
June 1993 - Nine years after ME onset. Here, I was so happy about getting abroad to Rome, alone (statues behind me are of Roman Emperors). Before I went, my brain was still a bit disrupted though. I could not fly (ME gave me a fear of confined spaces) so I went by train across Europe. I felt like a child on its first adventure alone (though I had travelled the world alone, before ME). I had wondered what a hovercraft looked like? I just could not remember. My brain was slowly learning to "re-route around the damage " (much like a stroke victim), to restructure experience, reintegrate, to live again. The confidence was returning as I tested and tried new things. I had emerged from behind what had seemed like "a glass screen" in terms of relating to people. I could interact again! I was alive. This feeling of wonder has never left me: the sense of being in a beautiful, vibrant world. However, about this time I made a mistake in my diet: I started to eat dried fruit, which is packed full of sugar and yeast. Gradually, I lost the feeling in my lower legs and consulted an MS specialist. A brilliant doctor, he said, "What have you been doing recently you weren't doing before?". I knew immediately what the parethesia was: it was candida in my gut caused by the dried fruit. This too might account for the first symptom, which was loss of feeling in my big toes. That night, I took a sizeable dose of raw garlic and by the next morning the feeling had fully returned. My legs have been been fine, ever since.

damole.jpg

May 2005 - Detoxified and feeling great at last! Due to the Disbaility Disrimination Act being implemented in the workplace, disabilty officers identified my problems as being rather like dylexia and gave me a quiet room by myself with lowered lighting. I could not ahve worked in the open plan and this room was a real therapy. I was registered "disabled" at last! Due to improvements, I had been working full-time, training others since 1993 and now travelled and lived normally, even energetically. Some people say I now do more and have a more lively appetite for tackling problematic things than a normal person (life's everyday challenges seem to me no problem compared with ME!). In this photo, I had this unbelievable constant "high" which comes from relief at not being physically disrupted, in pain and with terrible, incurable malaise. I had now been on the high raw/health diet for nearly 20 years.

bergamo02.jpg
October 2006 - I had recovered enough to work in an open plan office like everyone else though I faced a wall to cut out extra visual stimulation and I was allowed to wear earphones with to block out noice or to listen to music at work. I had a high profile on carbon and on hidden disability issues, trying to really improve life in a wider community than ME/CFS. (By the way I gave up flying for environmental reasons - see photo). Being engaged in other things as well as ME, is a sign of real recovery. I still feel that every day is a special gift from God. I experience life "in technicolour" because I am not in dreadful pain, tortured and deprived. I have even made up for the years that were "stolen by ME" and feel a sense of thankfulness, greater understanding of myself and of society. ME/CFS has brightened my vision. In fact, the wisdom that ME/CFS has led me into has been worth all the pain and suffering. I value the right things, not shadows and deceptions. I know, not in theory, but on my nervous system, that Someone does faithfully walk beside you through the darkest places of troiuble, poverty and illness and that hope, faith and God's love can overcome even ME/CFS. That is a real prize - at the end of all the hard road to recovery. Fight for it with everything you have left!.

Alison Bailey Castellina
Alison Bailey Castellina

June 2013 I am now married, in our own warm and comfortable home, enjoying relaxing, quiet gardening, and a good varied diet. I have been in full time work for many years, fighting climate change and working on behalf of people with chronic illnesses at the national level. By the grace of God, I have mostly made up for "my wilderness, lost years" in terms of pension and income.