Her worst symptoms include absolutely chronic fatigue, she does have a wheelchair but can survive some days by using crutches from mid day onwards and sleeping in the afternoon, she also has a car specifically geared towards disabled drivers.
(The family say that most of the young people her age (22) that attend Breakspear, are in wheelchairs, and a few are bed ridden a lot of the time)
She has developed Hypermobility in all of her joints, and rheumatoid arthritis appears to be creeping in. She also recently had a spat of passing out which was due to low levels of oxygen in her bloodstream.
Its heartbreaking, she used to love horse riding and surfing when younger, but can no longer even contemplate doing them.
The family own a huge building with a proportion let out as holiday lets. She desperately wants to contribute to the running of the place, but on changeover days she has to drink at least a litre of coke cola in order to do 2 hours cleaning! It then takes her 2 days to recover.
With the amount of antibiotics she takes and for so long, she watches her diet like a hawk (apart from the necessary cola) raw fresh foods, no yeast, wheat, or sugar, tea or coffee..
Its a huge huge battle for the family, and Breakspear cannot predict how it will end, i have to say the leading (American) expert battles against the NHS on a regular basis.. anyone who has this disease and is not diagnosed in the early stages, and cannot afford private fees is pretty much buggered from what i gather.
Sorry to sound like a doom monger, but i've watched this family fight for years, and their DDs health and therefore quality of life disintegrate, while the NHS system has fobbed them off .. and i'm absolutely gobsmacked.