Thursday, 1 May 2014


I need somebody
Not just anybody

You know I need someone

Just a little earworm to start this post, which is for Blogging Against Disablism Day 2014.


I'm a very independent person.  This is partly because I have always had to be, what with growing up with a disabled single parent (although there was lots of wider family support, at home it was Mum - who had COPD, Gran - who was a pensioner (she was 81 the year I was 18), and teenage me).  This meant that a lot of my time was spent doing stuff that teenagers don't tend to do, like carting oxygen cylinders in and out of houses and up and down stairs, helping my mum wash her hair and emptying the "commode" (bucket in the cupboard under the stairs) when necessary, doing the food shopping.  And then mum died when I was 16, so it was just me and Gran, and we just plodded along doing what needed doing between ourselves.

I've worked since I was 14.  This has never really been out of choice - in my family, you worked when you got to 14 (for Dad, in his greengrocer's shops), or you didn't have any money for nice things - but more out of this real desire for, well, food and shelter and stuff.  I've never (until recently) been able to ring anyone to say "I'm in a financial pit, help me out of it".  And more to the point, I've never wanted to.  I'm too damn proud.  I'm a bit like a swan, I put out this external image of always being in control, always coping, looking good swimming along the river, whereas underneath I'm paddling like hell just to keep myself from drowning.  And I've been in the "nearly drowning" position for...oooh, almost twenty years*.  But I've managed.  I've coped.  Because the alternative is "not coping" and that's not really much of an alternative.

However, recently, my various disabilities (ME, Fibromyalgia, and recently diagnosed** EDS as well as mental health issues that, while stable at the moment, have been really quite severe at times) have meant that I have had to learn to accept help from other people, and this has been REALLY HARD.  It's hard to go to someone and say "I can't do this by myself" - that's always been the same as failing, to me.  It's also hard, when someone is helping me, to let them do it, and not take over and do it myself.

Case in point: The lovely Monrow.  I met her at work a few years ago, and over time, she's become one of my "spare mums".  I can go to her when I need a hug, when I need someone to give me a kick up the bum, when I just need an "adult" to talk to.  She also understands chronic and fluctuating illness, having daughters with ME and family members with mental health problems.  Plus, she's just generally lovely.  So, when The Boy managed to get a job recently (*happy dance*) and I was wondering what I was going to do in terms of having someone to help me do the housework etc (because the other option was Himself going to work full time and then coming home and doing all the cooking and cleaning etc) and Monrow offered to come over to me once a week to do the stuff I couldn't do.  We agreed that she would do my washing up, clean the kitchen and bathroom, do the vacuuming and mopping, and whatever else I needed.  We've arranged it so that the food shopping gets delivered while she's here so she can help me put it away.

This works well for The Boy too, because he gets a nice clean and tidy flat, a not-entirely-spoonless*** wife, and it's someone I know and trust rather than a random cleaner.  I'm also comfortable enough with her that if I need to have a shower and something happens (I have a walk-in shower but this doesn't mean that things don't dislocate randomly; I don't shower when I'm on my own in the flat in case I fall and can't get up) then I wouldn't mind flashing her my girl-bits.

So, she turns up every week, we have a chat and a cup of tea, and she gets on with doing my stuff.  On any other day, I can sit/lie/be on the sofa all day, with the TV or radio on in the background (because of my tinnitus I can't handle silence), sometimes pottering around the internet, at other times snoozing, or reading, or just "being".  So why is it that on this day - even if I don't have enough spoons to get dressed - I can't do the same?

In advance of this post, I've been thinking about why this is.  Why is it when I'm on my own, I can do nothing, but when someone is here, I need to be doing "something", even if the only reason that that person is here is because I'm not able to do "something" by myself and they're willing to help me?  And I think I've worked that out. It's because I don't want to be seen as lazy.

Now, I will say that I'm lazy; I've always been lazy, it's not a new thing.  But, actually, it's not really laziness.  I'm just a super-efficient super-procrastinator.  If there's an easy way of doing something or a hard way, I'll do it the easy way; and there's no point doing something today if I can put it off to the last minute.  I've tried to not procrastinate, but it's just not me.

So why is it that now I don't want other people to see me as lazy?  The only thing that's different about me now versus me of, say, five years ago (apart from the husband, the weight (4 stone down) and the hairstyle) is that I'm not working**** due to my disability.

And it's got to be disablism - plus the current climate of "everyone on benefits/not working"***** is a scrounger - that means that I don't want people to see me doing nothing.

And that needs to change.

*Is it coincidence that this is almost exactly the same amount of time that I've been mum-less?  I don't think so

**I had repeated subluxations of my knees, particularly, when I was a teenager, to the point that I ended up having an arthroscopy when I was 16.  I didn't know the word "subluxation" existed until recently, but I would be at A&E probably twice a month with a knee that had "popped and locked" - my medical notes show that I was "markedly hypermobile" but that was classed as a good thing because I did LOTS of gymnastics and ballet.  I do wonder how different things would have been if (a) I hadn't done so much sport and (b) I got an EDS diagnosis back then (I also have weird teeth and strange eyes).

***I sometimes am entirely spoonless but it won't be related to my having almost killed myself doing housework.

****I still, theoretically at least, have my job.  My employers are keeping my position open and I'm being paid PHI (through an insurance company - yay for getting a job at the height of the boom!) which works out about half of my FTE salary.  If I could press a magic button and be well tomorrow, I'd be back at work like a shot.  I miss working; I miss the social side, I miss using my brain, I miss everything - even whinging lawyers who don't know what they want.

*****I don't receive ESA because of my PHI - I was on contribution based but (a) that's time-limited to a year and I'm still waiting for my assessment (it is 14.5 months since I claimed ESA) and (b) it's reduced to nil anyway because the PHI is classed as "pension income".  I also still pay income tax and NI on it, as it's paid through my employer's payroll.  I do get DLA, but I received this (at the same rate as I get now) when I managed to work full time (nearly killing myself in the process).

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