It's wonderful that we can all offer each other support on this site. Thank God for it at times, as its been my only avenue to vent my feelings honestly. After 20+ years of suffering and another night of pain, I've had enough (again!). We all say that at some time don't we?
Anyhoo a few of us are keen to raise awareness nationally and are looking to set up an Action/Steering Group to organise our campaign. It would be fantastic if you'd get involved whether a teenager or older, there's a whole spectrum of psychological and emotional effects relating to this life-destroying disease. Let's show that it affects any age, shape size and profession indiscriminately.
I do think we need to get properly organised and have a key objective to achieve. For instance, I'm extremely passionate about lobbying government to recognise this disease and help set up consistent health care across the UK, not to mention the benefit issues for those of us who struggle to hold down a career because of it. Some of the other members have some fantastic marketing ideas.
Come on ladies, let's unite and try. It'd be great if you'd email my personal address below.
My email: firstname.lastname@example.org
Sorry if I sound a bit driven this morning, I've been awake all night in pain. Feel better for that rant - thanks for reading xxx