So, this week a very important ‘era’ came to an end in our house. My PA whom I’ve mentioned before as being particularly unreliable for many months, suddenly sent me some rather cryptic and somewhat dramatic texts about needing to leave and get out. Nothing to do with our family, but her own, and that is all the detail I had. It was a very surreal few hours whilst trying to work out what was happening, but once it was decided and I had the information I needed for myself (whether she’d be back at work here or not), it was suddenly like a massive heap of stress had been lifted from my shoulders and from our lives. Having a PA is similar I guess to having a PA work for you in a big business, sorting your photocopying, arranging refreshments for meetings, setting up rooms for conferences. If that person starts to become more of a hindrance in not turning up, and frankly their attitude is at times a little unsavoury, you can address these issues, leave the stresses of that situation at the office and go home to relax and be separate from it. Now imagine that this is your daily life in your own home, the person not turning up is who you rely on, not for administrative duties but for ordinary things everyone does… getting food for your daughter, or helping you on and off the toilet in a supermarket, or putting your hair up so you actually look at little less hedgerow that morning. It then becomes impossible to leave anything and go home to relax, you are at home and that is where the stresses in your life begin and are sustained. Think of it like this – your arms and legs have taken a ‘not today, sorry’ attitude this morning. Now what can you do for yourself today? What problems does this cause you, what shred of independence do you still have?
I have a very caring and supportive partner yes, but he needs to be able to work full time, earn a half-decent wage so that we can own our own home, provide for our girls together and be the normal family we’d quite like to be. It’s never going to be normal, but I’ve gone on about that before and don’t want to bore you all again (not yet anyway).
I can’t explain it. I don’t want my life, our lives, to revolve around my disability; my ‘needs’ (shudder, again); what is difficult; what is possible for me to do.
But bloody hell, it consumes us.
Independence is something everyone desires, but that not everyone can have. Relying on people for things that everyone else can just do, sucks. So when that other person regularly says “sorry I can’t come in today, I’ve got the sniffles”, one can get quite pissed off. The important thing I must mention here is that of course, if someone is genuinely ill, too ill to come in and effectively ‘be my hands’ for the day, then I have no argument or problem with a person needing to take some time off to recover. We all get ill from time to time, but there comes a point where monthly (or more) bouts of ‘dodgy belly’, ‘headache’, ‘backache’, ‘food poisoning from last night’s takeaway’… gets a little tedious, and dare I say it, a little suspicious. So each morning this happens, is the start of a day where I have to disrupt other people’s days, be that my partner or my best friend who has a family of her own to care for. Of course I’m never left to cope alone, and there has always been ways around these issues with those closest to me. But being highly dependent on people never feels more stark, than when I have to get other people to fill in that gap. I want my partner or my best friend or my mum – to just fulfill those essential roles in my life, without the added job title of ‘surrogate PA’.
It’s not a desirable way to be, or a kind of life and lifestyle to envy, and the number of times I need reassurance of being allowed to do normal things (have a partner, have babies, have a job, house etc) is and will be, infinite.
Goodness, this is getting a bit deep.
The unreliability was just one ingredient in a very mixed pot of issues with this situation and I don’t need that. I can provide enough problems for myself without others contributing! Luckily for us, my new and improved PAs have stepped in and are helping make my life a little easier. Some people may ask “why the heck didn’t you address this issue earlier?” but the reality is we did, many times, to no avail.
I guess what I’m trying to make clear in all of this…actually I have no idea how to make plausible sense of these issues. I just hope in 20+ years I have worked out how to not have a problem with, erm, being the problem.