I'm really sorry about your situation, no advice to offer but it seems from previous threads that the waiting process can be long and is the worst part! It does seem very unfair though that in the case of disability that having someone who is helping you can penalize you, I know it can be very hard to actually get help from government agencies, they should be thrilled that someone is doing it free of charge and not costing the government! Can your friend officially become your carer?
On a side note, do they have the power to go through emails, phone calls, SMS's etc? i have read about social networking sites such as facebook being used to gather evidence, but the other stuff (that is not public) just seems a tad too invasive!
All the best