Change, both big and small seriously affects me.
This is both change to my regular routines, which I discussed in yesterdays blog and change to things which have become planned, say if a day out is planned and then gets cancelled or elements of it change.
I basically cannot cope with change.
Depending on the day, the situation, where I am etc, will depend on my exterior reaction to change. In yesterdays blog about routine I talked about having to buy 2x500ml bottles of light ribena, if that can’t happen my routine is changed. This means I panic, I’ve known myself to be in the shop and just stare at the shelf where the light ribena usually is and panic, not knowing what to do, not knowing where to go. It feels like I am there for hours, in reality it is probably up to about 20-30 minutes. My anxiety goes through the roof and I cannot function for the rest of the day. Maybe for those who change isn’t an issue this may seem like an over reaction, for me it is not. My routines are my safety net, they mean I know what I am doing. When my routine changes I suddenly can’t cope, my brain cannot process the change and I am stuck panicking in a world where I don’t understand it anyway. My routines are my little bit of something to hang onto, take it away and I am completely lost.
If others are with me, it can help a little as they can help to get me to somewhere else where I may be able to get what my routine needs. When going for a curry once with my partner, we were sat in a restaurant we hadn’t visited before, had ordered drinks, but they didn’t do a korma on the menu. My partner asked if they could do one and they couldn’t. I was becoming very distressed, rocking back and forth, crying, becoming withdrawn and hitting my forehead. I didn’t want to leave as I felt so guilty as we had ordered drinks, but my partner explained and we were ok to go and we found some where else and I got a veggie korma. With my partner being there he was able to guide me through the world and it was slightly easier to deal with. Not easy, but every so slightly less difficult.
Maybe for you having the same meal every time I go to a restaurant is boring, well for me it is the difference between safety, comfort, less anxiety and severe distress.
So please don’t call me boring or lame or predictable for my routines. Please never hassle me to try something different (yes that has happened, and eventually I agreed, because I couldn’t cope with the bullying, but it was hell) If I feel comfortable I *may* at very rare times try something new, or have something different I may have had before, but that needs to be done in my own time.
I do understand that sometimes plans you have made with me change, emergencies happen. If you change a plan with me and I become distressed, it is *not* because I am angry or annoyed or upset with you, it is because something has changed and my brain cannot cope or process it. Give me time and space and I will be ok. Ask if there is anything you can do, but don’t be offended if the answer is nothing, or if I don’t want a hug or any contact. Often my sensory issues become worse when in a meltdown or shutdown state.
To me the world is a bloody scary place, where not only do I not fit, but I don’t understand it. I often describe interaction, communication etc as follows: others have a manual, a guide book on the world, how it works, non verbal communication (facial expressions, body language etc) sarcasm, and just generally how to understand other people. I never got given this manual and if someone tries to explain parts of the manual to me, it is in a foreign language that I cannot understand. I try desperately to understand parts, but when I ‘test’ them in the real world I am regularly told I am rude, wrong or stupid. So these routines are some ways that I have of coping, that I know if I go to a certain place for food I know what to say to order it.
Please don’t try and change them, or call them or me boring due to them. I’d rather eat the same meal everytime I go some where, which I know I will enjoy, than have a meltdown or end up shutting down.