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How long has THIS been going on??!!!!

So, stylishbastard came to visit yesterday. In passing he said he missed LJ. I said I'd popped back a few times but didn't check it regularly and we became whistful about it then talked about general rubbish and moved on.

This morning I woke up with a stinking migraine. This is normal right now. I won't rehearse my troubles again, but if you are interested https://elaine4queen.wordpress.com/2015/11/11/the-banality-of-evil-2/ outlines what I'm going through.

Anyway, one thing I like doing while I wait for triptans to work is to type. Can't say 'write' because I have zero brain, but facebook provides an ideal distraction. Usually. I did spend a bit of time there, but of course, this morning it is full of what is happening in Paris. I made a few comments and shared a couple of links, then I signed out because I didn't want to get too much into it. I thought 'I wish there was another fb I could go to where I didn't have to deal with so many people and ALL THE OPINIONS which, though it is not twitter, do come thick and fast and high pitched SCREAMING I AM RIGHT AND YOU ARE WRONG etc. As you may know.

Anyway. Then I remembered LJ and lo, not only are a whole bunch of my friends still here, but also, what about that side bar with the twitter feed and instagram feed? That's great!



Hello again my friends. Sorry for being so out of the picture!
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The Pleasure Bath

Perilous Pond became the first outdoor swimming pool in London, renamed Peerless Pool in 1805, closed and drained in 1850 it is now Peerless Street.

The first time I saw the Children's Eye Hospital I thought the jagged fascia rather cruel.

YOU COULD PUT SOMEBODY'S EYE OUT WITH THAT!

Sharp metal shards suspended, screening the windows at the front. Port holes at the side, like tiny tears.

Now I know the piscine history of the street I'd put money on the architect having done their homework and can see the lit up fascade mirroring a moonlit swimming pool, easily. A conceit, then, but if so at least a nod to the now invisible past.

On the other side of the road the outlook is a council estate and round the edges there is evidence of the tear down and upgrade now going on on Old Street, a block behind.

A man wearing a T shirt bearing the legend "Dockyard Supplies" seems to speak to the past, he grandstands silently like a toothless muscle dog, but no, he is not working, he's waiting for a friend, and they embrace and go off elsewhere.

No more swimming up and down here, but nearby Ironmonger Row baths is one of the main reasons I had for moving to this area. I wanted to be 'no excuse' distance from a swimming pool, but a year later can safely report that there is no such thing. I saw a flat on the top floor of a small tower next door, on Norman Street, but I couldn't have persuaded the guy to swap. Tottenham was too far away, he said, but I think he just didn't like me not LOVING his view.

Well, it was a grey day and all you could see of the skyline was flattened and bleak. I think bad weather London is like living inside a pie. It's a valley, really, and the sticky polluted air can be trapped by a solid topping of cloud.

Did you know Fray bentos is a place in South America? They must tin those pies before shipping. That'd make most sense.

I wonder if I'd have been allowed to swim with my dog in Peerless? It's a dream of mine. Ironmonger is a no, even without the toxic chlorine it's a hard sell.

Breast up, back down, I made a decent fist of it at first. Only twenty minutes in the water, but even so, break a good habit and it's hard to go back. I had a steady series of weeks where a friend came with me. That was easier, and so it is when I go to yoga. Down faced dog, and thread the needle, tree, and corpse. Evocative poses reached for by lumpen women an hour a week. There is still an interest in reviving or maintaining the fitness in this area - a lot of busy gyms.

It's mostly encouragement I need. Hitching a ride on someone else's energy, rhythm entrainment, back and forth, so much easier than using my own. Go and come back.

In the winter it got harder to go swimming. Potentially fatal for me, when the water was colder - swim or spasm and sink.

Like the victims of the Perilous Pond.
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Reflections on Fibro



Darlings on Livejournal, you know about this. You've seen me through the lion's share of my illness, or at least the first tranche, the orientation period, if you will. But I'm not sure I have ever really reflected upon this here, it's been about the day to day business of living, and then a more 'fit for strangers' version on Wordpress.

One exception was the month I spent on a daily blog about migraine. I wrote a migraine story a day, then added padding with two non migraine items. Partly I was worried about losing readers, and then partly I didn't want to bum myself out over a month just talking about chronic pain.

This week I'm visiting Ken in Munich, and it turns out his girlfriend has a friend with fibromyalgia. So, the problem as presented, for her, as filtered through girlfriend then Ken to me is twofold. First of all it seems that Germans like to see evidence of illness and then they like you to address your imbalance and get better. In my experience this is by no means culturally specific. Most people really want you to get better or die, and I think that's very lizard brain, very herd, very anthropological. You don't want some member of the herd having a weakness that threatens the main group in some way.

Her second problem, as filtered is specifically her boyfriend. Now, with a chronic illness, really, relationships are hard. She may not have a sustainable relationship, given her chronic status. So anyway, Ken and I have had a series of conversations about how do you explain yourself in a way where they get it. Obviously, I always point people towards the 'spoon theory'. I sometimes share it on Facebook in passing, I have a link to it on my Wordpress front page, but I don't talk about it much, it's not 'mine' but it's also something I use in passing in conversation with other 'spoonies' - it's useful when talking about the inside experience of chronic illness and it's useful for explaining day to day experience when the person you are talking to is receptive.

Now, it may be that boyfriend just needs that level of insight but I'm also thinking, well say ot is true that there is cultural difference, I asked Ken if people in Germany recognise autism? I asked that because I wonder if it'd be useful to talk about one thing that does have credence by comparing it to this problem which is a syndrome of symptomology largely made up of things which everybody gets to some extent or other, and it relies on self reporting for validation. It struck me that it's a valid comparison because both things are kind of 'about' overstimulation. The difference is that in autism the overstimulation has obserbable behavioural outcomes, whereas in fibro the overstimulation manifests in pain which has to be self reported and can sound like hypochondria to the unsympathetic listener. Not that people are always sympathetic to autistic manifestations but the evidence is there to see. I know I've said several times I wish I had stigmata, and it's true, because I used to have nosebleeds, and it never hurts, but the sympathy is astounding.

So then there was this one other thing which was about using credible language. Spoon talk is fine for what it does, comparing to another ailment is another way but here's a phrase I think could be useful when having to be more technical. That phrase is "central sensitation". A lot of people with fibro get migraine and it's used there to talk about the body recting to all sensation as if it were pain. For migraineurs that's often scalp pain, but for fibro sufferes it can literally be anything. It's like your whole body is on red alert all of the time, and by the way, we don't have CFS but we do, of course, get fatigues that feel like flu and brain fogs that leave us in a kind of mini fugue state.

Having everything wrong all of the time does make us party poopers, but it needn't be curtains for relationships. I only need to have a couple of good days to rub together before I start looking at full time jobs and planning am itious projects, and friends and partners are the same, they want to live in hope. The keepers are the ones still standing by you after hope is over.
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Form Follows Function

So, one of the reasons I've been around this past couple of days has been a growing disenchantment with Facebook.

Some of you read my wordpress blog here, and may have noticed that going off the boil too.

And I dumped twitter ages ago after my account got hacked and whatever hackbot got in messaged my friends there. It annoyed me a lot, I didn't use it all that much, but still. Then I tried to delete it, which seems to have not happened and now I don't even know the password for it, so - whatever. I started a new one, but really don't have the 140 character mojo.

Loads of people from here are on fb and some people sort of slid away from here, while others do both. For a long time I was happy doing both, then I sort of wanted to raise the bar on the blogging front, so changed to Wordpress to put myself squarely in the public realm.

I , too, 'slid'... it was a lot to keep up with everything, and this ended up neglected. I'd have done things differently if I had really known how things worked, I reckon I'd have cut and pasted this and WP so as to have access to comments here, and to keep me in touch more with people here. SORRY! (I'd post a picture of a kitten here, but I think even cat fanciers are now thoroughly sick of cat memes).

Anyway, I'm glad I kept a key under a plant pot to get back in here, because it's lovely to be here again, and in another technological twist, I now have an iPad and the LJ app is surprisingly good, so that's nice.

Between moving house and being rather ill and so on, my WP blog had been a bit neglected. I found myself more and more on fb, and rather living there, which you might spot, turns out to be a bit of a mistake.

I'm not saying fb is inherently evil, it allows me to keep in touch in a minimalistic sort of a way with people, and I've made some writer contacts, so that's nice, but I've never filtered people there and it's getting a bit unmanageable. One of the things that's had me scurrying back here, is the level of argumentativeness. I think that's twofold, one is the propensity to share stuff that isn't original content, particularly, probably political stuff, and then there is a more subtle thing that is possible to do here but not inevitable - it's that the conversations aren't threaded the same way - there is a tendency to sort of 'all talk at once' and often start arguments with people who don't know each other and then it gets quite ALL CAPSy and rude, and the OP is nowhere in this unless he or she actually wants to join in a spat or act as referee, and why would you? Or rather more to the point - why would I?

So, thanks for having me back, and I expect to be around a bit more. Here's Poppet, a bit older, no wiser.

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