Breast Up, Back Down

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In a previous iteration I was pretty active for a non sporty type. Like, I started swimming regularly because there was a laundry at my local pool at St George’s. A large load bought me a 40 minute swim. I don’t hate laundrettes, in fact, when I was a kid my mum was friends with the lady who worked at the laundrette and I got to see backstage, which I found entrancing. I pretty much love the back stage of any kind of an operation, and perhaps my love of it started there, in the dusty and oily back end of banks of driers.

Anyway, despite my lack of hatred, if there is a swimming pool actually attached to a laundry it would seem churlish to ignore it. So I swam there regularly. It’s a 33.3 meter pool, and I know I started off at 8 lengths. So that was 266.6 meters. The amount of lengths shot up over what turned out to be quite a short time before I bought my first washing machine and turned to my next fad, weight training.

Now I’m back in the pool. Not that pool, and neither the pool of life, but the pool of Ironmonger Row. Knowing I’d benefit from monitoring my progress I looked up the pool length and have been keeping a note of my progress. It’s a 25 meter pool, but I’ve had three nominal total body replacements since then, all those cells ageing and mainly on the wane. I’ve gone up two dress sizes and now have a much less active life. My aerobic fitness has plummeted over the past two years and I’m leery of getting fat clothes, but look awful in the stuff I’ve already got, and that’s if I can get any of it on. In reality I can theoretically wear about a fifth of my wardrobe, and that’s mostly socks.

swimsuit

 

I actually moved house deliberately to be spitting distance to a pool, but it has taken me a few weeks to get around to actually swimming. First off, I had to get a swimming costume that was realistically big, and then I had to do all the paperwork that is involved in getting a concession sorted out. And then I had to get over myself for having done it a bit wrong and being angry with the man who gave me the hard sell for the membership option.

A smart smack to the head with a misdirected ball thrown in the park gave me the perfect excuse. Ok, it smarted, but it wasn’t that, it was the way the fibro tickled the shock into a nice entrenched neck pain, followed by a fire storm down my shoulders and upper back, and then a few hours later my lower back and a kind of sciatica thing all the way down to my left foot. Pain killers be damned, this was going to have to be worked off physically, and swimming was just the badger for the job.

I have a fear of new buildings. Not ‘new’ new buildings, just any building I’ve not been in before. So there was an element of loin girding, but however they are laid out at least swimming pools generally have an internal logic which can be tentatively predictable. I wore the swimmie under my clothes and packed all the things I needed, managed to get into the changing room without having a nervous breakdown and stripped off and had an acclimatising shower. The interior of Ironmonger Row has been recently refurbished and is reassuringly posh. There were steps to get in to the pool so I didn’t have to out myself as a less able bodied type of a person, and the water was acceptably warm, so none of the embarrassment of spasming and drowning, then. Good.

All I had to do now was swim. I have to be really careful about triggering migraines and other fibro related aches and pains which can go on, like the ball thing, to tell epic tales in my body, so I reckoned on 15-20 minutes. I counted my lengths. First go round I did 50 meters, rested for five minutes, did another 50, rested, did another 50 then called it a day. I did that two days in a row, rested a day and then did 100/100/100 LIKE A DAMN BOSS!

Even when I was nominally well I had a problem with headaches, so I had a physiological strategy – breast up, back down, thus saving my neck from undue strain. This strategy is good when everyone is lane swimming PROPERLY but not everyone does, and going backwards into gaggles of chatting people is a drag, but everyone was civilised and the pool wasn’t overpopulated. I could relax. I could relax and trust life.

Over the course of my previous swimming patch I’d noticed a tendency to think while swimming, and a sense of not having refreshed my brain the way I’d refreshed my body, so, it being the days of the Louise Hay and other ‘gurus’ I decided to do affirmations. “I relax and trust life, money comes easily to me” scanned for the breast stroke, and I can’t remember what I did for back. Now I just count. Not all the time, but 10 years or so of meditation means I really don’t have to sweat ‘just swimming’ but after the first go round I noticed that it was third bunting, hoist, steps, end of pool, which was just over 8 strokes of backstroke the speed I was swimming at, so bunting 1,2,3,4,5,6,7,8 flip, stop.

As long as the alternative is drowning, swimming lends itself well to an approximation of a meditative state. Swimming is neither eternalistic by nature nor nihilistic. It is radically embodied and totally existential.

When I was at school you always had to really hurry to get dressed after swimming. I really hated it. Claggy clothes and hair clinging coldly to skin, all to rush to a lesson I doubtless had no interest in anyway, and under the apparently watchful eye of our resident pervy gym teacher.

Now I am an adult and no one is the boss of me. I take my time washing and drying, resting and mindfully taking the next thing I need out of the locker and ultimately packing everything away in a sane methodical style. The building mirrors my own carefulness back to me – here is even a bank of five hair driers awaiting use in the most civilised manner just before the exit.

A couple of days later and I dial it back to 200 meters in total.

I’m back in the swim.

Good Morning, Sunshine!

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Apparently this has been the wettest winter in 200 years. I’ve certainly been migraining more or less solidly since the August Bank Holiday, and the past couple of days of sunshine have been a welcome respite.

When I surface I take a look around at what is going on and hope to God there’s nothing I need to have done, need to be doing, should have done, ought to have done…

Yesterday I did a bit of paperwork. Not very exciting, but also, pleasingly, nothing too terrifying came to light.

In homing pigeon news, you may remember I’ve been trying to swap flats for the past several months. I fancied a move to Brighton, but it is so hard to get a bite. I tried to juggle a three way swap or two, but it really wasn’t happening, so I’ve gone back to my roots (or, you know, one of my roots) with a swap to Old St.

Home again, home again… jiggity jig.

As they say in Blade Runner.

It’s good because the location has a precise set of qualities. It’s not in the crazy of Hoxton etc, but it is walking distance to it, it’s central, but being just north of City, also quiet, and AND and it’s about 100 yards to the nearest swimming pool, the famous, and infamous, Ironmonger Row baths.

It is not an utter done deal, but both my swapee and I have filled in our respective forms and handed them in to our local authorities. Now we have to wait. They will want to come round and inspect, but there’s nothing for them to see in either flat, so unless something unforeseen happens, I will be moving early/mid April.

It’s not the same as Brighton, but it’s not a bad second best. And if and when I want to turn around again I will have a good bargaining chip of a flat. I’d have thought the Tottenham Riviera would be a good swap for a person from not London who needs to live in London but doesn’t want to be in it… but it seems that’s not how it works. When people move to London they largely want central.

So be it.

But in the meantime, my plan is to get swimming and lose the astounding TEN KILOS I have put on since moving here. And recover some aerobic fitness. Aerobic fitness is kind of shit value because you have to keep it up, but living five floors up without a lift ought to do that on it’s own, so that’s a bargain right there.

Poppet, of course, won’t have the wonderland of bread to eat – the buffet laid out by the bird feeding public on the towpath – so she should become more svelte as well.

Only thing is, I want to get on with it now. I am itching to start filling boxes.

Of Beds and Bedrooms

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Being somewhat criptastic. Or spoony. Disabled? Certainly I have the dread Invisible Illness. I have spent the past couple of months in bed. I have also spent this morning, in a short window of relative wellness writing to my MP and encouraging others to do so too, on the subject of the reviled Bedroom Tax. For those who don’t know about this it’s a measure apparently designed to help families move into under occupied public housing -which seems fair, right? The way it works is by docking Housing Benefit for low income or non working people so that they can’t afford to live in their homes. This has had two main effects that I can see – first of all, claimants who have what is designated as a ‘spare room’ are pushed to move into private rented accommodation at whatever cost and inconvenience that entails only to have to claim a much higher rent for less space. The second thing is that this affects families with disabled members disproportionately, since they often have extra room for various reasons (storing equipment, quiet area for Autistic kid, bedroom for someone who might otherwise share a bedroom but can’t because of illness) and their home is often specially adapted for disabilities (ramp, grab rails, non slip flooring). I am not personally affected by this ‘bedroom tax’ but as a disabled person of some description I have been affected by other measures this Govt has taken in it’s war against the poor and disadvantaged, and I don’t like it.

I can’t bring myself to write a straight political post, it’s not in me. And there are plenty out there who are doing so anyway (here and in more detail here. If you are in the UK and your MP voted against repealing this punitive and pointless legislation or, maybe even worse in a way, if they were Labour and they failed to bother voting then do please write to your MP here. It’s the work of moments, really easy, and if there is ever going to be any point in voting for these lazy half wits again we need to remind them who’s actually boss. WE ARE.

The bedroom tax debate full list of Labour non-voters, all 47 of them:
Diane Abbott, MP for Hackney North and Stoke Newington
Debbie Abrahams, MP for Oldham East and Saddleworth
Bob Ainsworth, MP Coventry North East
Douglas Alexander, MP for Paisley & Renfrewshire South
Jonathan Ashworth, MP for Leicester South
Ed Balls, MP for Morley and Outwood Clp
Hugh Bayley, MP for York Central
David Blunkett, MP for Sheffield, Brightside and Hillsborough
Gordon Brown, MP for Kirkcaldy & Cowdenbeath
Chris Bryant, MP for Rhondda
Ann Coffey, MP for Stockport
Huw Irranca Davies, MP for Ogmore
Geraint Davies, MP for Swansea West
Gloria De Piero, MP for Ashfield
Jim Dobbin, MP for Heywood and Middleton
Frank Dobson, MP for Holborn and St Pancras
Brian Donohoe, MP for Central Ayrshire
Frank Doran, MP for Aberdeen North
Clive Efford, MP for Eltham
Frank Field, MP for Birkenhead
Paul Flynn, MP for Newport West
Mike Gapes, MP for Ilford South
David Hamilton, MP for Midlothian
Margaret Hodge, MP for Barking
George Howarth, MP for Knowsley
Lindsay Hoyle, MP for Chorley
Siân James, MP for Swansea East
Alan Johnson, MP for Kingston upon Hull West and Hessle
Tessa Jowell, MP for Dulwich and West Norwood
Gerald Kaufman, MP for Manchester, Gorton
David Lammy, MP for Tottenham
Ian Lucas, MP for Wrexham
Siobhain McDonagh, MP for Mitcham and Morden
Alan Meale, MP for Gateshead
Meg Munn, MP for Sheffeild, Heeley
Jim Murphy, MP for East Renfrewshire
Pamela Nash, MP for Airdrie and Shotts
Dawn Primarolo, MP for Bristol South
Joan Ruddock, MP for Lewisham, Deptoford
Anas Sarwar, MP for Glasgow Central
John Spellar, MP for Warley
Gerry Sutcliffe, MP for Bradford South
Chuka Umunna, MP for Streatham
Joan Walley, MP for Stoke-on-Trent North
Dave Watts, MP for St Helens North
Alan Whitehead, MP for Southampton, Test
Shaun Woodward, MP for Se Hellens South and Whiston

Here’s what Lib Dem MPs did on Labour’s motion to abolish the #bedroomtax

Absent

ALEXANDER, Danny, Mr
BIRTWISTLE, Gordon, Mr
BROOKE, Annette, Ms
CABLE, Vince, Mr
CLEGG, Nick
CROCKART, Mike
FEATHERSTONE, Lynne, Ms
HUPPERT, Julian, Mr
KENNEDY, Charles, Rt Hon
LAWS, David, Mr
LEECH, John, Mr
LLOYD, Stephen, Mr
MULHOLLAND, Greg, Mr
REID, Alan, Mr
SANDERS, Adrian, Mr
SWALES, Ian, Mr
TEATHER, Sarah, Ms
THORNTON, Mike, Mr
WARD, David, Mr
WILLIAMS, Mark, Mr
WILLIAMS, Roger, Mr
WRIGHT, Simon, Mr

Aye (voted with Labour)

FARRON, Tim, Mr
GEORGE, Andrew, Mr

No

BAKER, Norman, Mr
BEITH, Alan, Rt Hon
BRAKE, Tom
BROWNE, Jeremy, Mr
BRUCE, Malcolm, Rt Hon
BURSTOW, Paul, Mr
BURT, Lorely, Ms
CAMPBELL, Menzies, Rt Hon
CARMICHAEL, Alistair, Mr
DAVEY, Edward, Mr
FOSTER, Don, Mr
GILBERT, Stephen, Mr
HAMES, Duncan, Mr
HARVEY, Nick, Mr
HEATH, David, Mr
HEMMING, John, Mr
HORWOOD, Martin, Mr
HUGHES, Simon, Mr
HUNTER, Mark, Mr
LAMB, Norman, Mr
MOORE, Michael, Mr
MUNT, Tessa, Ms
PUGH, John, Mr
ROGERSON, Dan, Mr
RUSSELL, Bob, Mr
SMITH, Robert, Sir
STUNELL, Andrew, Mr
SWINSON, Jo, Ms
THURSO, John, Mr
WEBB, Steve
WILLIAMS, Stephen, Mr

Teller: Noes
Liberal Democrat WILLOTT, Jenny

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Now then. Back to the world of me and mine. What’s weird about getting a bit better is that it doesn’t necessarily make a person feel  better. When I first got ill, or should I say when I crashed so hard I could no longer ignore the multiple systems failures occurring around my body and mind, it was really very very bad. I lost all sense of who I was – I’d forged my identity through work and socializing, like many do. I wasn’t in a relationship, didn’t have my dog, was just totally incapacitated. Actually, at first I felt a bit scared, but my brain was really foggy so I didn’t really feel much at all for weeks and weeks, running into months. Also, one of my major things was some really weird stuff going on in my back which had been giving me referred pain – so, in fact, my migraines were at a peep. I was mainly a vegetable. After a few months I took a little job backstage at the Shaftesbury Theatre with the idea that if I was used to working every day over the summer I could go back to teaching that September without too much trouble. Unfortunately, because of one thing and another, a shitty doctor, a prescription med that made me go quite mental, for a start, I missed that moment, and also couldn’t continue with the theatre work either. Between inappropriate care and medication and the continuation and exacerbation of various symptoms I actually got worse. The brain fog faded somewhat, and the back pain was less incapacitating, but the migraines got worse. A lot worse. 16+ a month is the definition of chronic, and I was starting migraines during migraines, and was lucky if I got a handful of days a month not in writhing pain. This went on for several years. A few months ago I started getting Botox treatment, and it is helping a bit. What it does is make a bit of distance between trigger and pain which in turn helps the triptans to work. I am still taking as many most of the time, but I had quite decent breaks in the summer, so when the weather hit, I actually took it pretty badly. I’d got used to being able to write, and Pattern Recognition went down well at October’s Have A Word. And they asked me back for March, so I started writing a second piece. Then the pain and the brain fog and the usual crap kicked in, but I’d had this taste of being normal and I’d liked it. Some of you who know me on facebook saw that I was really beside myself on Monday, because I had a really massive unmanageable day of pain – absolutely nothing by comparison to the endless days and nights I used to get, but now I’m not used to it, and it frightens me half to death. It’s like although the medication is all about giving me a higher pain threshold I actually have a lower tolerance to it when it comes.

Nobody Died

When I first got ill I did have a friend who berated me for having time off, and who tried to persuade me that I should use this strategy or that to get back in the game, but at that time it was impossible anyway, and what I needed to do was to rest. I moved house and learned more about pain management and meditation. Eventually, having become effectively housebound I got a dog. You didn’t know I had a dog? Here’s my dog.

She likes yoghurt, and then, for desert, she likes the carton.

I also acquired a boyfriend, no mean feat when you never really leave the house, and haven’t socialized live for several years. Then I moved house again. The first move was a transfer – my HA accepted I needed to move on health grounds, and I was grateful at first, but then after 8 years I found I wanted something else, and the tech for swapping within public housing had evolved. (Years ago you could swap, but you had to go to the council offices and look at lists – no pictures, no real details, just lists of people usually desperate to get out of whatever version of hell they were living in – nobody at that time moved just because they wanted to.) Now, of course, it’s all online. You can upload pictures, you can set up some limited search parameters, and you can swap not just because you  have to for work reasons, or because you hate your neighbours, but because you want a change of scene or a different kind of home or locale. It’s quite civilized really. I wanted somewhere quieter, and I got it. But what I wasn’t expecting was to totally fall through the floor physically. I became unutterably ill after the move. Maybe this is why I am so sympathetic towards people being forced out of their homes. I elected to move, the new place was better for me, I could afford the move, I had no dependants, but even so, the upshot was that I became extra ill on top of my ‘normal’ level of illness, and I had to ask my boyfriend to look after me, look after the dog, do everything, basically. After a few months of spiralling out of control with inadequate health care – zero continuity except for my neuro, and a lot of difficulty getting any comprehension of what my problems and needs were I finally thought “fuck it” and attempted suicide.

As you might imagine, this took some getting over as well. With a massive bolster of psych drugs and a bit of  attention to the physical side of things I got a bit better. I started having the Botox treatment, and began managing a small kind of sustainability of daily routine in my life. If I didn’t have financial support from my family I wouldn’t have managed any of this – and bear in mind both my parents are elderly and pensioners, so taking £500 a quarter for Botox is something that can’t go on forever, but I’m hoping a year’s uninterrupted use will have some overall effect.

So yeah. Yesterday’s vote. Very bad news. Moving house is recognized as being up there with divorce and bereavement in terms of stress, and I only had my own illness to contend with, and I didn’t have financial issues or children to deal with and I did have support. Imagine any number of permutations where you have extra stress on you and you’re being forced to move out of accommodation that does work for you into accommodation you will never be able to afford on your own, might be less easy to get to work from, you might have to have your kids change schools, you, your partner or your kids might have sickness or disability issues that can’t hope to be addressed in private accommodation and you have a glimpse of why the Bedroom Tax has got so far under my skin.

A Woman of a Certain Rage

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So much to tell you. Not that anything has happened in ‘real life’, since now is very much the winter of my discontent, as it is every year for about 9 months. This needs to be addressed at some point, it’s just not sustainable. But it can’t happen this year, I just have to stay where I am and tough it out. Ill as I am right now, I’m not as bad as I have been, and as I am, here, in my pain and unending uselessness, it amazes me I have survived it at all, year on year on year.

Whatever has happened lately has been what’s happened online.  Over on facebook I’ve become involved in a fundraising event, and made a tumblr site End Of. There’s going to be a proper website very soon, but I got the tumblr up and running within four days of the original idea, and while it is, as Terri might say, ‘quick and dirty’ people seem to like it, and it’s somewhere to collate stuff and put info for the meantime. On the facebook page I got trolled by someone who said tumblr was the Betamax of the online world. I suddenly felt terribly protective of tumblr! Poor tumblr, what have they ever done wrong?

I made this to prompt someone else into doing a ‘proper’ design, or just inspire people to make their own and share pictures of them ‘in the wild’. Only afterwards did I realise I’d done the graphic on a ‘wife beater’.

Anyway, I had to stop engaging with the crazy because s/he was clearly only going to feed off any responses. In a discussion afterwards I was describing myself as a ‘woman of a certain age’ to someone else on the team, and NEARLY wrote RAGE instead.

While I find it fairly easy not to get involved in other people’s anger issues, I’ve got my own to deal with. Again, sort of IRL and sort of not… almost from the get-go anger has been a major topic in my therapy. I say I am irritated by someone, therapist suggests I am angry. I wonder if it can be true that I am so out of touch with my feelings I need someone else to tell me what they are?

In other news, Hyperbole and a Half has been so quiet not because she’s been in a depressive impasse but because she’s been writing & drawing a book. I stupidly got my mum an e-reader last year and I’ve cut off my nose to spite my face because books were the obvious and usual gift idea for her, easy and appreciated. Now she’s gone all virtual it’s really hard to think of what to get her, so this was great festive timing on the part of H&1/2 because it’s a book you could only enjoy on an e-reader if you had full colour. And another good thing is that since my mum is phobic about the internet it will come as an entirely new thing to her. (Though, as well as favourites from her blog, there are new stories as well, so us devotees have something to read before we pack them up as Xmas presents).

Actressy friend, Clare Cathcart is going to be in this play which is so exciting. It’s on for ages and it’s in London so I can probably go to see it, even though there aren’t matinees, so I will have to time myself well to manage it, AND it’s been directed by Kathy Burke who is a total genius. I miss her being on telly, but she says she likes directing better, which is fair enough.

Mind you, my friend Ian is having a house warming tonight, and I’m blogging right now to distract myself from quite severe pain, so even though it’s quite near and I really want to go, the chances are against it.

Again. Need to get myself out of this country for these months in the future.

MASSIVE EFFING BORKDOM.

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Quickly, before I go, here’s a tumblr collection I made the other day for you elaine4queen.tumblr.com/day/2013/10/30

Il cane innocente, Il giovane Montalbano, e mi sento male

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In ‘my life as a Hanna Barbera cartoon, the dog known as Ms Roberta “Poppet” Bobs stole my sausages the other day while I was answering the door.

piccolo cane innocente

Other dogs have a good line in looking guilty even if it’s just that they are skilled actors, but Pops just looked at the plate in my hand, hypnotised by her own pleasure, while I was telling her off, transparently thinking “Those were good, are there any more?”

She understands when it is in her interest to do so. Ten used to talk about perambulating the animal, but I think she’s sussed that one out, so it’s lucky I’ve become entrenched in The Young Montalbano so now we have a spot of Italian to spice up our linguistic feints.

I have tried watching Montalbano before, with The Snack Thief which I found slow and boring, and not about sausages at all. Whether it is the young handsome actor in the prequel or to do with the writing or the directing I don’t know, but whatever the reason or cunning combination thereof, I am really enjoying this series. I now believe I should be living in Sicily, and a quick glance at the weather forecasts tell me that I am right.

What is less appealing is that the town which plays Vigàta is apparently notorious for crimes against dogs, and for there being a lot of street dogs, for want of a pound. I saw a picture when I looked it up for daydreaming purposes which would curdle your blood. So, mixed reviews, there.

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In other not unrelated news, I have been abed for a lot of the week. Ten’s been away so I’ve had to do what I’ve had to do, but I’ve rather run aground and today he is doing everything and I am most grateful. While I am unfaithful to him with Salvo he is dealing with the piccolo cane and the shopping and so on. I am so very sluggish and have been absolutely tanking the triptans. I only hope that today’s turn of the full moon sees off this current malaise, because I’m at a terribly low ebb, unable to get on with the writing project, and generally feeling crappy. So, sorry for lack of posts, but this is the reality of life in the hermitage right now.

What is nice is that Ellis has invited me to Have A Word again in March. Lets hope that I am well enough to write something by then… There’s another thing on, in April, again in Brighton, which is probably going to be called END OF, perhaps with some other words appended. It was only cooked up a couple of nights ago by Julie Burchill, and is going to be a fund raiser for a domestic violence charity. The spots are only 3-5 minutes, and I think perhaps it’s not for me, but I am glad to be in on it, it’s a great project. However, I also intend to get up to Scotland in the in just springtime, and I dare say I will need to be realistic about the wellness to travel ratio that I can cope with outside of the high days of June – August. I really do need to work out how to get somewhere warmer for a bit.

Flip Flop Tan, A Visit to Epping Forest, and The Imminent Scaffolding

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I wish I could like autumn more. I mean, I do like it in theory, but my body doesn’t. I’d come off preventative pain killers and was doing really well til the weather hit, and then I realized that wasn’t going to happen. If I could work out how to manage it financially I’d look into moving somewhere where the weather was basically UK summer most of the time, then I might even be able to work. I was stunned at how well I was when I was in Spain, earlier.

proudly prehensile… and a flip flop tan, to boot!

Also, I am saying a sad goodbye to this year’s ‘tan’. I do know that most people wouldn’t count this as a tan as such, but if you compare the blue lines where my flip flops have been to the regular flesh colour on the rest of my feet I think you’ll agree that I’ve done well. I’d just carry on wearing flip flops if I could, but even on a hot day there’s dew on the grass in the morning, and what I have discovered with my summer of the flip flop is that it’s not the cold that’ll get you, it’s damp. Any amount of moisture makes flip flop wearing untenable. I even wore my flip flops to Epping forest the other day without major incident, though they are not ideal off road footwear.

Multitasky Ian (feat Cam)

No, Poppet.

After my flurry of visits abroad I’d got rather mired in the Tottenham Riviera, and it was great to be asked on a day out to Epping with my friends Ian and Al and Al’s little boy, Cameron. Ian did the driving, and we arrived at the bit where the bikers congregate. I would have liked to have taken some pictures, but, well, bikers. Friendly enough but lets not push it. There’s a little cabin where fried food and hot brown beverages calling themselves ‘tea’ and ‘coffee’ are sold. These are seriously muck, but the bacon sarnies are just the job at fortifying you for a woodland walk. Poppet had a fantastic time eating horse poo and wallowing in stinky water and running about like an idiot. Cameron had his BMX bike with him, so we could walk quite far without Al having to carry him, which has been a feature of our walks thus far. For the past few years Al has actually had to carry both Cam and a bike a fair bit, so it’d just as well he’s a gym bunny.

Al and Ian are the people I see most, and do feature in my “should I move?” scenarios. I’ve been all over the place with the home swapping thing this summer, and I’ve had to wind it down now. Partly because it was taking up too much of my head room, and partly because time is passing, and my window of relative wellness is becoming smaller as we move towards the winter, and November is the scheduled time for the scaffolding to go up, probably for several months, while we get new windows and roofs and they replace our heating systems. This should effectively trash what decor there is here, and so between the unsightliness of the scaff and the likely wreckage indoors I can only see the keenest person looking past all that. So rather than field inquiries over the next while I’ve left the profile hanging with just central Brighton as a preferred swap. It’d take me away from easy striking distance from Al and Ian, but nearly everyone wants to visit Brighton, and of my friends who have bought, most have two bed flats, so I can visit THAT LONDON as they call it, and also reconnect with my Brighton friends. Anyway, we mustn’t hold our breaths, since I’ve rarely had a bite from a Brightonian.

In the meantime, Have A Word is coming closer and closer. I’ve done a bit of writing but must do more. It’s mainly about picking blackberries, but then, what else is there to write about? Hardly anything. Blackberries it is.

30 Things Meme – Invisible Illness Week (Small Life)

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It’s coming up to Invisible Illness Week so here’s my response to the 30 things questionnaire you just clicked through to (well, if you didn’t it’s there anyway, just like the tree that fell in the forest).

just like that

1. The illness I live with is: fibromyalgia and chronic migraine. Some say chicken, some say egg, either way, it’s bodily pain, exhaustion, insomnia, anxiety and severe headaches, lots and lots of headaches.

2. I was diagnosed with it in the year: Not sure. about 8 years ago. Never sure about dates and things. I am supposed to keep a record of all sorts of things, but in reality I am too ill to manage that sort of paperwork.

3. But I had symptoms since: Probably birth. Colic is now seen as a precursor of and a kind of migraine, ‘growing pains’ are now seen as a sign of fibromyalgia. I also suffered headaches as a kid, was put to bed with an asprin and dismissed as ‘attention seeking’. If pain really got you attention, I think I’d have noticed by now, and from my pre-crash experience (about 10 years ago now) I know that there are better and more effective ways to get noticed.

4. The biggest adjustment I’ve had to make is: Having very few choices about anything – from what to eat to where I can go or what I can wear or who I can spend time with. At the moment I am struggling with the fact that I can’t, and haven’t been able to for some time, decorate my home or even put pictures up.

5. Most people assume: I’m ok, I suppose. And that nothing they can do can help and that whatever I am doing is what I want to be doing, and however I have things or do things is how I want them. I remember a visitor being surprised at how few pictures I had up. Rather than ask me why, as a formerly active visual artist and someone who has a huge collection of images in frames, I might not have them on walls, she regaled me with tales of her own decor preferences and activities.

6. The hardest part about mornings are: Mornings are the best time of the day for me but I know that all the spoons will be used up by the time I have eaten and bathed, and if I do do something, go to an appointment, do a task, then I will be paying not just the rest of that day but for several days hence. So I suppose the hardest thing about mornings is knowing that even if I feel okay for a little while it won’t be for long, and I have to get through the day somehow  – and having done so I won’t be any further forward with anything.

7. My favorite medical TV show is: None. I don’t like medical shows. People may think that I am interested in ailments, I’m not. I like murders and comedies.

8. A gadget I couldn’t live without is: My heated blanket.

9. The hardest part about nights are: That if I am awake I will be in pain, and that the night will feel even more endless than the day.

10. Each day I take _approx 10 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried a lot of things. I always listen when people tell me about treatments, because sometimes there might be something that actually helps, but mostly I just feel even more misunderstood and isolated – going to appointments of any sort involves travel and probably being extra ill for several days afterwards, and alternative treatments are costly too, so unless you are going to drive me to the appointment every week and pay for it too, then probably save your breath.

12. If I had to choose between an invisible illness or visible I would choose: Visible. I’d like to have Stigmata, something nice and visual. I used to get nose bleeds a lot, and the level of sympathy was off the scale – DUDES!  Nosebleeds don’t actually hurt!

13. Regarding working and career: I miss working, and I miss financial independence. I miss creating something in the world. I miss the social contact. I miss being an expert at something. I miss having a vocation, an actual reason to get out of bed in the morning.

14. People would be surprised to know: How angry and upset I get – I feel I daren’t express myself a lot of the time, I have few enough friends as it is without alienating them. I know it’s not anyone’s fault that I am unwell, but I do feel like I have to be on my best behaviour all the time – I even try to be bright and breezy on the internet for fear of bumming people out. I only write as much misery as I dare, but I feel much more. And that sense of having to be well behaved is a bit of a burden. Sometimes I do write ‘I feel crap’ on facebook, and I love it that people ‘like’ or say ‘aw’ – it’s amazing how much that helps.

15. The hardest thing to accept about my new reality has been: How little it really matters, and how little there is I can do about it.

16. Something I never thought I could do with my illness that I did was: be of any use to anyone else ever. I love it when I can help someone with something. Especially when it involves something I know or am good at and can still do (not much, admittedly).

17. The commercials about my illness: don’t exist in the UK, thankfully.  I remember saying to a psychiatrist ‘will I be able to do that yoga pose if I take that drug’ – the ad was on the side of a tissue box. What rot. I imagine drug commercials are a lot like sanitary products ads, full of people who are busy doing cartwheels on the beach. I’m glad I am spared seeing them. Mind you, the anger might be quite aerobic.

18. Something I really miss doing since I was diagnosed is: Making plans that have any chance of coming to fruition.

19. It was really hard to have to give up: yoga.

20. A new hobby I have taken up since my diagnosis is: blogging. It can be done from bed, it can be any length, and it needn’t be done at all. No one is let down if I don’t blog for weeks. It doesn’t take materials or much in the way of physical action, all I have to be well enough for to do it is to handle the screen time and string a sentence together, and even then I don’t have to do it all at once.

21. If I could have one day of feeling normal again I would: go swimming.

22. My illness has taught me: compassion.

23. Want to know a secret? One thing people say that gets under my skin is: “Why don’t you get a taxi?” I have never been a big fan of taxi rides, the converations are tiring, and even being in a car in silence with someone I don’t know is tiring. They are too expensive, and they WILL give me travel sickness. If I am not going somewhere because it’s ‘too far’ I’ve already weighed up the logistics.

24. But I love it when people: find a way to include me.

25. My favorite motto, scripture, quote that gets me through tough times is: There isn’t one. No platitude from any quarter can help. Ten and Poppet and the internet people, they help, but sayings and quotes just piss me off.

26. When someone is diagnosed I’d like to tell them: you are entitled to your feelings.  

27. Something that has surprised me about living with an illness is: “I never imagined that so many days would ultimately  make such a small life.”
— Franz Kafka, from “Diaries”

28. The nicest thing someone did for me when I wasn’t feeling well was: Be there. Also, it’s helpful when someone offers me something specific – when you are in pain and maybe your brain isn’t functioning the last thing you want to do is guess what someone is prepared to do for you. Ask “Do you want a cheese sandwich” not “Is there anything I can do for you?” because there is, but I’ll be damned if I can think what it might be, right now even if I am lying here starving.

29. I’m involved with Invisible Illness Week because: Honestly, if I don’t do it no one else is going to do it for me. I am constantly supporting causes, even if it’s only ‘clicktivism’. What is horrible is that even high profile illnesses and disabilities don’t get the kind of support or research they need. Watching Pink Ribbon Inc shows how big companies and individuals spend so much money and effort fundraising without actually helping anyone. 

If a cause like that fails so resolutely, what chance is there for mine?

30. The fact that you read this list makes me feel: perhaps all is not lost. If you did get this far, thank you so much for caring to. I feel like I should apologize for having wasted ten minutes of your time. If you did make it this far, here’s a little tumblr for your trouble – THANK YOU! elaine4queen.tumblr.com/day/2013/8/25