Thursday 22 May 2014

Voting...or why I'm craving fish & chips

I voted today.  There was no chance that I wasn't going to.  I've never missed an election yet; I first voted in a local council election in 1995 and have put my X in the box every time I've been invited to since.  I've voted in Parish Council elections, Local Council (city and county) elections, General elections and European elections.  I've voted by post and in person, and I've proxied for other people.

Voting is very important to me.  I was brought up knowing that my gran's mum was quite *ahem* strident about her views regarding the subjugations of women.  Annie Evans was a publican.  Annie Evans thought that if she was good enough to serve in a bar, she was good enough to drink in one, and woe betide the man who tried to tell her otherwise.

When I was younger, after we'd moved in with Gran (when I was 8), there were three generations of women in our house.  And on polling day, we'd all go together (even though I was too young to vote) to the polling station and mum and gran would do their bit, and then we'd go for fish and chips.

When I was slightly older, when it was just me and gran, we still went together.  And then came the year when I *was* old enough.  I was SO PROUD to have my polling card, and get given the ballot paper, and put my X in the box for my candidate.  I was participating in the democratic process!  And then we had fish and chips.

And then I moved out, and Gran moved into a sheltered flat.  On polling day, I went and cast my vote, and then went and walked with Gran to do hers.  And then we had fish and chips.

Time went by.  Gran moved into a home.  The first polling day she was there, I went after work (having voted on the way), and pushed her down the road in her wheelchair to the polling station.  And then we had fish and chips.

More time went by, more votes, more fish and chips.  Gran's not here any more, but I still think of her every time I put an "X" in a box.

Hopefully one day I'll have kids and grandkids of my own.  And I shall tell them of my mum, and my gran, and my great gran, and we shall go and vote.  And we'll follow it up with fish and chips.

Monday 12 May 2014

ME Awareness Day

Today I had Plans.

Not big plans.  Just plans.

I had planned to get up, prepare a shepherds pie for dinner tonight, go to the library and return some books, have a shower and write a blog post.

I got up, about four hours later than I'd imagined I would, but I just wasn't able to get out of bed when I wanted to.

I didn't have the spoons or brain power to cook straight away so I flopped onto the sofa and watched the last episode of The Crimson Field.  I can't remember what happened so I'm going to have to get it back from the Sky+ deleted bin.

I prepped the base of the shepherds pie and the veggies to go with it (sitting on a stool in the kitchen, listening to Steve Wright) and then didn't have the spoons to do anything else.  Including eat the majority of the sandwich I made.

I'm about to go for the shower now - I feel safer doing it when someone else is here (hubs is home from work now) if I'm really spoony, even though it's a walk-in shower I still worry about falling and not being able to get up or being stuck with shampoo in my hair and no energy to get it out etc.

Library will have to wait until another day; thank goodness for online renewal facility.

So...ME Awareness Day.  Yup, I'm aware of my ME, and really wish I wasn't...



Thursday 1 May 2014

HELP!

I need somebody
HELP!
Not just anybody

HELP! 
You know I need someone
HEEEEELLLLLP!

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

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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).