Wednesday was my second session with my PA. We went to the Pump Rooms in Leamington which is a sort of combination of art gallery, museum, library, tourist information desk, cafe, and function rooms. It was interesting, but in a slightly weird way.
We were wandering around looking at all the exhibits about the history of Leamington Spa, and of course a lot of that is information about, you know, the actual Spa part of it. Some of the more experimental equipment looked downright scary, but a lot of the descriptions made the spa experience seem like a lovely way to spend a day. The Victorian visitors to the spa would drink lots of water (although apparently it didn't taste very nice), and then you'd have a soak in this and a massage with that and a steam treatment over here and then you'd go through to a cooler room and relax on a sort of sun-lounger while someone brought you a drink and a snack. The place was purpose-built and therefore extraordinarily accessible, since a big chunk of the target market would by definition be elderly or infirm and therefore being wheeled about the place. However it is also beautiful, since another important aspect of its function was to be a pleasant and relaxing environment rather than a clinical one. Afterwards, you went across the road to Jephson Gardens to enjoy the gentle recreation and surroundings.
God, it sounded like bliss, the absolute art of relaxation. Which was the weird bit. To be a disabled and kind of stressed-out (don't ask) person, sitting in an accessible hydrotherapy and relaxation facility, which is no longer in use but gets given money to produce displays and information about how fabulous it once was...
I still haven't got the hang of having a PA yet, though. The problem isn't her - she's lovely and doing really well. I just can't seem to get my head around having an employee.
For example. On Wednesday, when we got back from our outing, I was feeling pretty rough, and I wanted a cup of tea. So while my PA brought in the wheelchair, I shuffled through to the kitchen and started trying to make a cuppa. I was visibly and obviously having trouble, and my PA asked if I'd like her to do it. Full marks to her for asking rather than muscling in. But I messed up - I autoresponded with "no, no, I can manage" just like I would if a friend was there.
But my PA is not there as a friend. She's there as an employee. Helping me with the normal stuff (like tea-making) that is difficult or painful for me to attempt to do is not an additional favour that I would be unreasonably demanding of a friend who has already put themselves out for me by taking me out. It is the entire reason she is there and is what she is getting paid for. It is unfair of me as an employer to expect her to stand around like a lemon watching me struggle when she is aware that her job description is to help me so that I don't have to struggle.
I really have to try and get to grips with the whole idea. Intellectually I get it, but in a more immediate sense, it's just... I get through my life by insisting that I am capable of being independent, that I can Do Things, although they might be more difficult or take longer. In my day-to-day life I do any number of things that are stupid or reckless or painful simply because they need doing and no one else is likely to do them - like hanging up laundry or heating up food or washing up dishes - and then I fall over or spill stuff or scald myself or break something - and then I basically yell at myself to stop being such a useless pansy and get the hell on with things. But it gets worse, because then on the occasions when I am offered help, I push it away! For instance, I'm so sick of people assuming that Steve does everything for me and waits on me hand and foot, that I overcompensate in trying to make sure he doesn't do anything of the sort. It's even worse with people I don't know well. Admitting I can't do stuff and asking for help is like doing a DLA form. I hate it. It makes me feel vulnerable. It's also really irrational and I need to find a way of sorting it out.
Saturday, March 28, 2009
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7 comments:
I know what you mean though - when I first started working I found it really awkward to ask the secretaries to send faxes or do some photocopying for me and I had to keep reminding myself that this is what the company wants them to spend their time doing. It is hard but if you're acknowledging it to yourself you're halfway there. Those of us that know you in real like know how much you do for yourself, and how much effort it takes you and I'm delighted that you have a PA because you deserve her. It's just a mental adjustment but you'll get there. I'm glad you had fun at the pump rooms, I love the Turkish Bath room because all the lattice work is so pretty :)
What if you evaluate your PA in terms of spoon theory?
She's there to do the jobs that need doing, but that you resent wasting spoons on, when there are important things to save them for? :)
Regardless, being an employer is a new way of thinking. It'll take a while to get used to. Don't beat yourself up about it taking time to learn.
I imagine this is totally normal; this is only your second week after many years coping without paid help - the most important thing is that you appear to have made an excellent choice. It's really nice to hear about these trips out your having - I can imagine how great that is (and how even greater it will be as you get used to this).
I'm so sick of people assuming that Steve does everything for me and waits on me hand and foot
Weirdly enough, however obviously sick I get, people seem to assume the opposite with us. My (very old fashioned) Gran is always praising AJ for the fact he lends a hand with the housework.
I imagine people we know do make different assumptions about the division of labour between us, but this is the one I hear vocalised. Odd.
I will get there, but it's reassuring to hear that I'm not the only one who has difficulty adjusting to having an assistant (in whatever context).
With Steve, I think part of it is that when out and about, he goes beyond "gentlemanly" and into the realm of "butler", always opening doors and going to the bar and whatnot, for everybody. So some people can't quite grasp that a guy who barely allows his friends to pour their own drinks, would be able to go home and sit back quite happily while his disabled girlfriend struggles with housework. Their very reasonable assumption is that he is as solicitous of my welfare at home as he is in public, possibly more so. And in some ways he is, for example in terms of making cups of tea, or fetching my medication when I'm having a Little Moment.
Unfortunately, at the risk of propagating a male stereotype, Steve doesn't actually see things like overflowing bins or mouldy cups or mountains of unwashed clothing. So people say to me things like it must be nice having someone do everything for you or gosh, you've got him well trained! and I want to start throwing things and shouting that I would happily make all my own cuppas if it meant I could relinquish responsibility for just a couple of the household chores without it turning into a game of housework chicken that I am guaranteed to lose.
Yeah, I had similar 'adjustment issues' at first. I only use a PA in certain circumstances at work (paid for by AtW) and at home I now have a cleaner (paid for by me, via DLA).
It took me a long while to get used to the idea that I could ask them to do stuff I'd usually struggle with. What helped was exactly what you described - them offering to do something without muscling in and doing it for me, until it eventually dawned on me that it was OK to let them take that slack.
So my work PA would always carry my suitcase to my hotel room dooe and I'd say, "Thanks, goodnight". One day, he said, "I can lift it onto to shelf and unpack some of it for you if you want..."
And, instinctively, the first time, I said, "No, it's fine," and the moment I closed the door realised it would be really groovy if he could do those things, so called him back...
It just takes a bit of getting used to, not having to manage and make do.
Me too, and I have the bruises to prove it :)
Independence is a state of mind.
I know you don't know me I am a bendy person like Bendy Girl she knows who I am. I just wanted to say your comment with regard to filling in a DLA form just rang so true with me I had to post to say so. I have husband who thinks he does everything to help and yet find myself yearning for your PA, I am sure in a few weeks you will be writing to say cannot do without. Don't feel guilty you deserve it from reading through your blog. Living with EDS as I do I understand so much of the symptoms you mention. Take care and thank you for the intelligent read on a night when sleep evades me.
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