My time, your time

I've learnt over the last five years of managing P.As independently that it is important to establish boundaries and set up expectations from the beginning.  Having somebody involved in most of your daily tasks is never easy and means that I don't run on my time very often. I tend to make my needs happen when it's convenient for others as opposed to when I actually need things and I therefore have learnt to make all of my needs fit in to other people's schedules. This is unavoidable when it's your family and friends helping you because they have their own things to do and cannot be available exactly when you need them. Nevertheless for me, causes huge levels of frustration and at times becomes unbearable. Therefore when have a P.A, someone who is employed to meet my needs,  I see it as an opportunity to run on my time, which gives me so much freedom. It might sound silly but knowing that I can say to myself 'no I won't go to the toilet now but I can go in ten minutes if I want to' puts me in a completely different mind frame about my life. Therefore one of my rules for my P.As is that my time is my time and their time is their time. That means that when I go shopping, that is time for me to shop not for them too for example. I don't know a single person who wouldn't be particular about the way in which they had help if they were in my shoes. I think if the person is right for the job they will get you as a person and understand what's important to you. They will also have the imagination to think about the effects of having people involved in every decision you make and will respect the fact that you need things done a certain way. Luckily for me, I have an amazing group of P.As often referred to as 'team Greene'. I have learnt that having the right people is so so important. I never want to be in a situation where my P.As are merely people who help me physically. For me, having people who I can have banter with and build friendships with makes having to have help with personal care so much easier. Lots of my P.As have become life-long friends who I really love and as many of them will read this I have to say; thank you team greene for all that you do.

'Why do you bring that wheelie chair with you?'

Cerebral palsy comes with me everywhere, in every situation that I'm in it's present. Sometimes I barely notice but there are other occasions where I'd love to just leave it at the door, enter and just be myself. See it's very hard to show who you are as a person when your legs are constantly jumping or you try to speak and no sound is produced. At times, this is my reality and it's a bloody annoying one. The thing is in some ways I love having a condition that mirrors how I feel because my legs are my radar, my way of keeping my emotions in check but the downside is that I can't hide how I'm feeling because my body reveals all.  I know in my head that my level of spasms and stammering will fluctuate forever and I also know that there's not much I can do to prevent this. But it does make me feel like an idiot, that I just can't get my body to comply with what I want it to do. I'm let down by my body because it doesn't always let me be me. At the same time, I don't hate my body or my condition for that matter and it's not my nemesis. It can't be. I can't live my life battling with the effects of my disability nor do I want to. It's just not always a harmonious duo...