I applaud you in writing such a fantastic post. I too feel I struggle everyday with the new me . I have had to reduce my hours at work , through fatigue and just coping generally with the perils of eating slowly , or not always having access to eating something that I am able to , then following the dentist hygiene routine that I've had drummed into me , makes the most simple tasks take forever. Oh yes nearly forgot to mention the jaw exercise and mouth stretches, that seem to amuse everyone but me , can't just take time out or rest breaks when you manage a house with vulnerable adults with epilepsy , autism and learning disabilities . Then there's the sweating issue half an hour after taking the pilocarpine , and having to have a quick wash and change my clothes to look and feel presentable enough, whilst still trying to do a good job and look and act in a professional manner . People have no idea of the struggle's we continue to face several times every day . It's nice that people comment that I'm looking great but I agree gives a false view some times of what is like coping with the after effects of this horrendous disease.
That's not to say that I'm not truly thankful for my life I am and I will never take a day for granted ever again.
Thank you all for your continued support and great advice xx