Hi, just finished reading your book and love it. Very real. The part of watching the kids ride on their bikes, must have been so scary, if anyone had fallen and you were unable to do the natural instict to physically run and cuddle. Being just a single mom without the added ME has had me allow my kids independent freedom beyond their years out of pure necessity. Life gets tough for both sides here, and we do what we have to do.
Being a pharmacist in a government hospital in south africa, working with interns and other medical learners the book realy puts the overburden on these categories into clear perspective worldwide and the ability to be vigilant and caring and capable to your sick patients while staff health is expected to remain, as if we never get any form of illness. Just there on duty for the demanding customers like any other job. Being the pharmacist with my daughter having ME, and seeing how she reacted to her meds so differently to how was predicted it makes me understand your frustrations. We are in the middle and still unable to really give all the answers. So many fantastic extras i now need to start reading, thank you for this guidance, but what is clear is each ones case no matter where in the world and under what medical care has been found to assist, from start to where we are now is similar in some ways but never the same. This illness is so complex and misunderstood, especially with all the perfect blood results seen, that awareness and training simple vigilance and recognition to the facts is so important, so that even with few specialists we can at least have better referrals happening where so many are still unrecognised and missing.
I know this is for Orthostatic Tremor and there are alert cards around for essential tremor which are But maybe it is worth considering something similar to include the disabled logo too for traveling. Anyone have any thoughts?