>When I went to the disability employment adviser (dea) yesterday one of the things we discussed was fatigue and the fact that I will need to build up to doing all the hours I could manage for that reason.
Background as I understand it: With CP you don’t have a limited amount of energy as in some conditions, but because your body doesn’t work the way it should it takes more energy to do things than it would a so-called “normal” person. That’s why the spoon theory works so well as a model of what it’s like to have CP despite it originally being designed for invisible illnesses I think.
I have had tests done which showed it takes me something like 4x as much energy to walk and move around than the average able-bodied person. As far as I know that applies to all tasks as well but it is definite with walking – I think it was determined when I had a Gait Analysis done. That was last done when I was around 14 or 15 (and actually i think my last full GA was before then) so I’m not sure how that information applies currently. And also if I had it done now I would question it’s validity for any number or reasons including the fact that my condition is quite variable and more importantly what is the comparison to?
Anyway my brief lecture on CP and fatigue is now over and I will return you to your regularly scheduled update (tune in tomorrow for another CP details lecture if you’re lucky!)
As I said, we (dea and me) talked about fatigue. She told me that she thought probably to start with I would find I could manage work and not much else. I will get used to it and find I can cope with more as the months go on but the key here is going to be finding a balance that allows me to have something of a life as well. One of our strategies to deal with this (other than my only going for P/T work) is going to be to try to get me in work only in my immediate locality to cut down on commute times and therefore stress levels.
Two years ago when I first left uni I met with her and it was a very difficult conversation because Mum had said to me that she thought I would only manage part time and I went to the dea saying “My mum says this and i’m not sure I agree with her.” and she then turned round and told me that “I think your mum is right, Emma”. Now I have come to realise that what they tell me is the truth (I do not, however, see any truth in certain people from CAB thinking I’m not coping w/ my hours there). So that conversation (yesterdays) wasn’t very easy to have and did make me think that maybe it will be harder than I anticipated to find a job – not many jobs that suit me in this locality. But I was prepared to discuss fatigue this time and it was OK.
She did have one fatigue related comment that I *loved* and when I told my carer tonight she thought it was great too.
For the sake of posterity ~ The comment that made me think “I love this woman, she talks my language!”
Emma: “I’ve been working on doing more around the house for myself but I’ve told my carers they’ll probably need to do more of it again when I start work.”
DEA: “Yeah, well it’s not like dust is an antique. You can just ignore it. Until such time as dust becomes an antique you don’t have to take care of it.”