I have written about what CHARGE syndrome means as an acronym but it also has many hidden features. One of these features is anxiety OCD and other behaviour problems.
While many people look at me they see a smart intellegent girl. What some don’t see is the underneath. I have mild anxiety and OCD. I am prone to melt downs. There are triggers.
In CHARGE people say look at what is triggering it but i feel because I come across so well people dont relise. For me my triggers are pain mostly gut pain wich ive had all my life, heat, a change in routine, people telling me off or thinking they are and sometimes i just am not sure of the reason.
A melt down for me usually is yelling crying and hitting my self. The problem i have is I try to say it is a part of my disability. It is something in my body thats not right but people dont get it and tell me to stop blaming it on my disability.
To stop it from happening i try to relax. Having neuro feed back has helped alot. I start my 3rd lot of ten sessions this week we are hoping to get to a point where i wont need it. The brain will hopefuly be able to one day maintain the new pathways by itself. Other things that help are working out what may of set me off and avoiding it.
With my tummy pain it is hard to avoid but i try not to eat everyday as i get sick easy. With the heat i stay in the air con or in a cool place. Drinking cold water and swimming helps to. If a routine is going to change i need to be forewarned or someone needs to explain why. With ppl telling me off it is hard to avoid but I try to be less sensitive and be good.
I obsess and fixate on things easily to that can be hard for those around me to but I am much better now days.