Case: Olivia’s story
When I think back to early 2004, I was a healthy 12-year-old girl with a passion for life. I took part in many extra-curricular activities and was thoroughly enjoying my first year at secondary school. I loved being outdoors and was naturally very energetic. I was in the school netball team, often played in football matches, went swimming, attended weekly dance lessons and regularly went quad-biking on the weekends – I felt like I had unlimited energy.
It was during the summer holidays that year that I became rundown with a virus; it cleared up after a week or so. Not long after that I had a quad-bike accident, I was thrown off the vehicle at speed. The new school term started a couple of days later. By the second day, I felt too fatigued to play in the school football team and I noticed I didn’t have the strength to walk to school assembly. Simple things suddenly became a real struggle. The following morning, I was unable to get out of bed. The return to the school routine seemed to be the straw that broke the camel’s back. I was overcome with exhaustion and my body ached all over. This was September 2004 and I wouldn’t return to school again until September 2006.
My mother took me to see my GP, as well as a private consultant. After numerous and extensive blood tests all came back clear, both came to the conclusion that I was suffering from post-viral fatigue and expected me to be back at school soon. Many months later, and continuing to deteriorate, my GP diagnosed me with ME/CFS. I was told there was no cure and sent on my way feeling helpless and in absolute despair. The realisation that this was how my life was going to be was unimaginable.
Given the severity of the symptoms, I was confined to my bed. Most days I didn’t have the ability to speak, my mind felt numb and unable to form thoughts. I couldn’t lift my own spoon for breakfast. A slice of apple was too heavy for me to pick up to eat. Visual stimulation was now extremely difficult. I was no longer able to watch TV, listen to music or engage in any conversation. Listening to noise was impossible, it was a sensory overload. I was also overly sensitive to smells. There was such unrelenting pain and I had insomnia. Thinking back, I didn’t clean my own teeth for about 12 months; how could I grip the brush or raise my arm? Bathing also took a back seat; I didn’t shower for many months as the task was just too much.
In the summer of 2005, with no improvement in my symptoms whatsoever, a friend of a friend recommended the Perrin Technique to my mother as it was helping someone they knew. We booked a visit to The Perrin Clinic and despite how unbearable the trip would be for me, my mother and I knew it was essential to try and find help. At my first appointment, Dr Perrin confirmed the diagnosis of ME. In addition, he had a wealth of knowledge about the condition and was able to explain the science behind all of the complicated symptoms I was experiencing. More than that, he had answers and a treatment programme to alleviate the symptoms. There was finally hope that one day my life would return to normal; it was a huge relief to finally meet someone who fully understood the condition.
Treatment at The Perrin Clinic started off at once a week. My sister printed a daily checklist to ensure I adhered to the many elements of the treatment protocol (self-massage, rotation exercises, supplements, contrast bathing).
Slowly my symptoms started to improve, and a milestone change was going from not having enough energy to even speak, to being able to engage in conversation with my family. I could feel my personality gradually returning. My sleep began to return to normal. My cognitive function was improving: I noticed I became bored with resting.
Pacing is a crucial aspect of the Perrin Technique and even though I felt I was now able to do more, I had to be extremely careful to keep activity to an absolute minimum so as not to affect my recovery. The most important thing I learnt from Dr Perrin was the 50% rule – to do only half of what I was capable of, and that if doing something twice over will exacerbate symptoms, then doing it once is too much (this wasn’t easy to stick to, but effective!).
It was Spring 2006 and with invaluable advice from Dr Perrin, a plan was put in place for my return to education. I initially began with a visit from a home tutor, once a week, which allowed flexibility in case I became fatigued. After this went well, I was finally well enough to begin thinking about returning to school. My visits to the clinic gradually reduced as I improved, and I maintained the daily home treatment routine. In September the same year I started at school with a one-hour lesson a week, ensuring that lesson was held on the ground floor. I very gradually built this up, an hour at a time each week, and didn’t take part in any physical activity such as PE. By the New Year I was in school full-time, albeit on a reduced timetable as I took a couple less GCSEs than I had originally planned to prioritise my health.
However, it wasn’t all plain sailing, balancing school and pacing. With me now attending lessons it was important to be careful about other strains, so I asked for help carrying my bag and books between lessons. It was also arranged with the school that I was exempt from homework assignments; then I could rest after school. I restricted my social life; I wouldn’t often go out but when I did, I used a wheelchair. All of this was to ensure I kept within the ‘doing half’ rule, to avoid bringing on an onset of symptoms and undoing the progress I was making with the treatment – every little truly did help.
It was a great feeling to be back in school full-time. I was slowly able to have an increase in social activity and live life like a normal teenager. It was great to be able to spend time with my friends, building relationships that I had not been well enough to keep up with for a long time. I enjoyed simple things such as being able to chat on the phone; previously mental activity such as this would have drained me.
By July 2008, I was thrilled to have successfully sat my GCSEs and was back to quad-biking again on weekends. I still received treatment but only visited the clinic once every couple of months. It was at this time I felt confident enough in my abilities to take part in a school trip to Kenya – a four-week expedition that would include building schools, camping, climbing Mount Kenya and extensive travelling around the country. In particular, summiting Mount Kenya gave me a huge sense of relief and achievement. Afterwards I didn’t feel any ME symptoms; I was just like everyone else. I remained vigilant, however, to lessen the strain wherever possible (not carrying my own luggage, sitting out of strenuous labour, having a rest day on the mountain).
Although I had made so much progress, I did have a relapse later that same year. There was the emotional toll of my parents’ divorce combined with the stress of A levels which triggered symptoms again. I was disappointed but had improved before, using solely the Perrin Technique, so had faith that it would definitely be possible again. I decided to put my studying on hold indefinitely until I was discharged from The Perrin Clinic. It was a very difficult decision to prioritise my health rather than trying to keep up with my peers, but it was worth the sacrifice to one day be free of ME. Within six months I had recovered from the relapse and ever since then I have been symptom free.
It has been seven years since my last appointment at The Perrin Clinic, which was a huge milestone in my life. After being discharged I finally felt free to push my body to its limits without the return of any symptoms. I was so excited to be able to work full-time. I have held positions that involve long commutes, stressful environments and, at times, 24-hour shifts, all without needing any treatment whatsoever. I have been able to take holidays and do lots of travelling, finally able to live life to the full. It is the best feeling in the world. I enjoy every moment, knowing ...