A long while back, many of you will remember that I decided to pull a book together regarding the awful dilemma surrounding patients who get caught in 'limbo' due to perhaps having the symptoms and often actual events who are sidelined due to the seronegative nature of test results. Myself and family suffer greatly due to this, and currently so badly that this is impacting my children's education. This book will belong to all who write it with me, alongside raising money for charity, which charity or purpose will be decided at a later date. So I will go back into old posts to collect together the original people who offered to donate histories and also academic help. I am lucky to be able to attend several hospitals and one in particular is helping me now, but really patients should be listened to in a more constructive manner.
To say I am disillusioned regarding our current situation with my family would be an understatement, however I shall turn that anger into useful energy. I have many press contacts these days and also an interview with the BBC coming up in the future for a documentary. I delayed writing this, as own health and that of my children was so appalling, plus we moved house. I would now like to be back on track with this.
So please contact me if you are interested in joining in a positive writing exercise about this subject. There will be no naming and shaming of individual staff, this has to be a positive awareness raising exercise. To hopefully help in general with this tricky side of the condition and the ongoing problems we face.