In 1996 I taught deafblind children in a residential school. Class sizes trebled, assistants reduced, paperwork became a mountain! We worked in very close contact with the children and staff, so infections spread rapidly. After the second flu virus in 10 months, I did not recover, suffering from a very painful neck and shoulder. I did not take time off until I could not stand up, and returned when I wasn’t fully better. I suggested ME a few months later when the GP tests could not find the cause and was sent to a rheumatoid arthritis consultant who, after blood tests ruling out RA, said it probably was ME.
Many hospital visits ruled out other conditions, and I also saw a dietician, who did pick up the dairy sensitivity, but not the gluten/wheat. I had counselling at the time, which helped me to cope with my changed circumstances. Returning to work for 3 weeks part-time, then full time, I survived for 18 months. The pressures at work increased. After Christmas I collapsed again.
This time I did not get back to work. It was very stressful financially, emotionally and physically. However, with counselling, CBT and group therapy –all of whom recognised then that ME was a biomedical condition – and help from family and friends, I managed to live a very restricted life, but coped on my own. Even the jobcentre, following a work experience, decided I could not work!
Fast forward 22 years. After much support from Dr.Myhill and the ME Community, I did manage to return to part-time, low paid work and also retrained as a tapestry weaver, running two successful Arts-Council funded projects. Now retired, I volunteer for the Shropshire ME Group, and Shrewsbury Flaxmill – among other interests!!
It would seem from private thyroid tests I have an auto-immune thyroid condition not recognised by the NHS. However, I continue to volunteer for ME as this can be due to so many underlying conditions and is so misunderstood. Having been around the cause for so long, I have seen people improve with many different approaches – both NHS, private and “alternative”.
My top tips would be to allow your body to heal. Get help with basic tasks and finances. Don’t avoid psychological help, providing they understand ME, and the delayed onset fatigue. At least you get to download on someone who isn’t family or friends!!!!
My background was creating very small targets for deafblind children, but with big aims. In a term we managed to get a 7 year old child who did not stand independently to stand for 10 seconds. She eventually walked. Keep a record of what you do. Remember mental and emotional tasks use energy as well. Put the timer on – for what you can do easily. Only then increase the time. Above all, keep positive. A smile goes a long way to keep friends and family!!!