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.

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

 

HRT? No thanks, I’ll pass.

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First of all, the last thing a migraineur needs is dosing with oestrogen and second of all the last thing a spoonie needs is a new slew of drugs and their side effects on top of whatever nest of medications they are already juggling. Woah – there’s a mixed metaphor for you, and as good an illustration as any of just how MESSY things can get with multiple medications.

Anthony Goicolea. Pathetic Fallacy Drawings. Wolf in Sheep’s Clothing II

A quick look, then, at what symptoms HRT attempts to address;

  • hot flushes
  • night sweats
  • vaginal dryness
  • loss of sex drive (libido)
  • stress incontinence: leaking urine when you cough or sneeze
  • thinning of the bones: this can lead to brittle bones (osteoporosis)

(from the NHS page on HRT)

I started getting night sweats a couple of years ago. What with my already multifarious symptoms I kind of put it down to more fibro crap. I’d wake up with wet hair and a soggy duvet. It’s worth sleeping alone if this is going to be exacerbated by a partner, or if they are in any way irritated with you – their irritation is something you can probably live without. It did pass, though. I don’t get it any more, so it wasn’t forever. I have a bath in the morning anyway, and really, that seems to me to be good enough. That is to say – not worth taking a drug for.

Hot flushes. Hard to say when this started since it overlapped with getting too hot taking the dog out, ending up sweating and then having cold sweat next to my body. By the time I had problem solved the dog walks the spontaneous hot sweats were only an addendum to my problem solving prowess. This is what I did – I bought merino wool thermal vests. These can be worn on their own in the summer, since they don’t look particularly like underwear, and can be worn for exercise as well. Like cashmere, merino wool is excellent at dealing with sweat AND it’s smell. Cotton tops just get wet and stay wet and are horrible. They also have to be washed after one wear. Not the merino or cashmere garment. The fibers wick away the wetness so you stay comfortable, and don’t stink up, so you can wear them for several days. They wear well, too. I bought my black long sleeve ones a few years ago now, and they are still going strong, and I have just bought a cami vest to try out, and if it is good I’ll be getting another couple. Because you don’t need to change them you don’t need to buy many.

My other thing is that rather than have my hair short I just always have a hair grabby thing handy. If I am hot I put my hair up, if not I let it down. I wash it most days. Evidently ‘late’ middle aged women seem to have taken to having short hair in droves. It’s up to you, it’s not the LAW.

Be careful if you get vaginal dryness. I haven’t had a problem with this so far, but having worked at Sh! I happen to know that lubricants have different properties so it’s worth getting a bit of advice on which brand to go for. Some people’s bodies are a bit trigger happy with thrush, and I know that some lubricants are more advisable than others for this. You can get a basic one on prescription, but it’s not a medication as such, so has no systemic effect. Also, again with the cotton, or even worse, man made fibres. Silk knickers are the most breatheable.

Sex drive? Meh – it’s not brilliant, but I’m alright once I get going. Not being very sexually driven is a bit of a relief actually. I wouldn’t medicate for it. In any case the female version of Viagra is a massive dose of hormones – which for the migraineur, again a no no.

Stress incontinence is not something I have a problem with, but then I’ve never given birth. Kegels. I guess? And those disposable gussets? Develop a no sense of humour rule? And no sneezing. Definitely no sneezing.

Brittle bones. This is something women can be prone to. The answer is weight bearing exercise. If you want to, or you are too posh to do your own housework then go to the gym. Personally, I’m doing what I can within the limitations of my spoons.

***

HOWEVER!

I do use one hormone. And it’s a good one. Because of the migraines, and the really AWFULNESS of hormonal ones I have used  progesterone based contraception for many years. I have had injections and pills over the years, but eventually I started getting some side effects so I was offered the Mirena coil. I’d never fancied coils much, since I always imagined they would stab you to death from the inside. This despite there NEVER being any headlines about women being stabbed to death by their coils. Regular coils are, again, a no no for the migraineur, since they actually make periods heavier (and with endometriosis in my picture, too, any blood is too much blood, so too much blood is WAY too much blood). The Mirena coil, however, has a tiny release of progesterone which near enough stops periods entirely. This genius piece of engineering is staying in until it is ALL OVER. It’s quite new, and maybe it’s a bit expensive, because it was slightly tricky to get, but you know, they actually use it instead of hysterectomy, so good it is at it’s job. And this, bubs, can also be good for seeing off any cheeky little womb cancers that think they might like living in your pouch.

So that’s my plan, anyway, and so far it is working for me. It’s up to you what you want to do, but HRT is not the only game in town. It’s an option, but not for everyone.

Thoughts on Prompts and Pictures of the Tiger Worm Hotel

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Now that I’m back on the blogging trail, and now that I have done some serious worm hotel construction and had my bath, my mind turns to what to blog about today. During my mega migraine bonanza I missed a whole week of prompts for NaBloPoMo. Lets see what they would have been…

Monday, November 5, 2012

What are your thoughts about tomorrow’s election in the United States?

Well, what with all the hindsight, I can just say it’s a bit of a relief. Not because Obama is going to be a total angel, but because things would have been a great deal worse if Mr Mitt had got in. Like here, we have a tory mayor of London and a tory Prime Minister. Romney as icing on that layer cake would have been unbearable.

Tuesday, November 6, 2012
If you were President of the United States, what would be your first act in office?

Stop the drone strikes. Drones seem to me to be a war crime in conception, construction and use. They are no better than land mines. 

Wednesday, November 7, 2012
Talk about the last compliment you received.

Most probably the Kirsty I play Words With Friends with. She is very generous when I paste her! However, we are very often neck and neck towards the end of the game, which is very exciting. We are very evenly matched. Also, she is usually up already when I wake up, so we often play live, too, which is nice.

Thursday, November 8, 2012
If you could have any job (and instantly have the training and qualifications to do it), which job would you want?

I would like to be David Sedaris, but that job is already taken. 

Friday, November 9, 2012
If you could change one thing about your life right now, what would it be?

I would magic away the migraines and fibro crap. Then i would be able to do ANYTHING!!!!!! Except be a child prodigy, astronaut, ballerina, stunt double, body double, chess master, or opera singer. Those are all off the table no matter how well I got. If I could, I’d be a writer. So much tidier than painting, and I admire writers so much. I don’t think I could really write fiction, though. 

Well! That didn’t take long! Now I am all caught up. Well done me.

***

I dare say you are dying to see the Worm Hotel. Let me just dry my hair and I’ll take the camera out and see what I can offer you.

tottenham hilton under construction

the black thing was full, but the compost not fully, well, composted. so in moving the contents to the clear hoppers i may be needing quite a few of them to complete the job.

ten asked how the worms would reach the holes in the next box up – i am including quite a lot of twiggery for them to climb on. ‘like an adventure playground, then’, he said

i am not sure whether the worms will like the clear plastic. they do like the dark, it’s true, but then they also like to escape. i have found quite a few who think they are steve mcqueen.

So, very much still IN PROCESS as you can see. But I am getting there, and the new drill bit is paying it’s way. Obviously if I was building this entirely from scratch I wouldn’t risk the clear boxes, but since I have so many of them it is a good re-use and if they don’t work out I will just have to get some opaque ones. Although ordinary composting needs dark I am not sure if the worms do. If you leave the lid off they come up towards the light, so who knows what they are thinking.

drink more water, accepting an award, and a quote

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Migraine Awareness Month #11:  “Say What?!” What’s the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?

for me, it’s not just the STUPIDNESS of the thing, but also very much the context. a lot of the time i am interested in people’s suggestions, just because it’s usually simple things that are helpful (and i have fibro and possibly? a stand alone mental health condition, so i need all the help i can get) but there are some times when the “helpful suggestion” is just so annoying. and it’s usually when i think someone should know me better.

the time i am thinking of, in particular, was when some helpful soul suggested i drink more water. now, depending on how this is put or the timing of it, this can be a good idea. HOWEVER! in the ten years plus that i have suffered from chronic migraine i do think i have tried drinking more water. really, it’s not an obscure idea.

what pissed me off about this incident was that it was when i was involved with the buddhists in such a way that i was in a close knit group. you’d think that buddhists would be quite mindful and, adding insult to injury, this person had chronic pain issues too. i do understand that people often can’t bear my pain, most especially the fact that it is unlikely to go away. i get it, but the way i was told “drink more water” was so dismissive. as if i were a naughty person who deliberately didn’t drink water in order to give myself constant migraines! I’LL SHOW THEM HAHAHA! – let me be ILL ALL THE TIME! WHAT FUN!

no, it doesn’t work like that. thank you for your input.

“National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.”

***

and, breathe.

missus tribble offered me this award yesterday. thank god! i thought. not because i was desperate for recognition, although i am a fiend for praise, but because, crikey bongo! isn’t blogging every single day hard?

so having a TASK is a relief. only thing is that this one is a bit un-tasky because it requires me to tell you seven random things about myself, which still leaves a lot to me. however, it does at least let me extemporize in a way in which i might not have felt free to do otherwise. isn’t it weird, we have this space in which we can put pretty much anything, and yet we can still feel some sort of pressure. i don’t know when i became a monkey on a unicycle, i really don’t.

anyway, at the risk of having my precious award whipped away from me, the other half of the award equation is that of passing it on. DO YOU KNOW HOW MUCH EFFORT I MADE DOING THIS THE LAST TIME? DO YOU? loads, is what, and i think a grand total of zero bloggers accepted the award. so this time i am keeping the damn thing to myself.

so! on with the show!

seven random things. let me see.

1. my dog just grunted. she does that a lot. it’s the sound of contentment.

2. i need new glasses. these are totally wrong for my eyes now. this task involves going to an optician and having an eye test. neither of which mix and match well with this perma migraine i seem to have had the last fortnight or so. but having the wrong glasses on could easily be giving me headaches, so BLAH.

3. i will be 50 this month. i have mostly asked for cake, but my friend lottie asked me what else i wanted, so i sent her a list. mostly of things i wanted someone else to come with me to do. and we are going to do the first thing next friday, which is swimming in my local pool. AND what is more, friday is her day off, AND it is also a women only time at the pool, AND there is a poolside steam and sauna. mixing it UPUPUPUPUP!!!!!

4. ten claimed he found a wart on my side. i said ‘how do you know it’s a wart?’ and he said BECAUSE I HAVE BEEN WATCHING WITCH PORN. reader, it’s just as well i have a sense of humour, is all i can say.

5. i officially resigned from the buddhist things i was doing just after i moved here, in september. i am still more or less a buddhist, but probably in the same way as someone who says they are “C of E” is a christian. for those who are not in the UK, C of E is short for Church of England. saying you are C of E is more or less an admission of being fairly comfortable about not going to church, though might well marry in one.

6. when my mum visited recently she tried to help me hang the laundry. i let her, but it took ALL my restraint. odd thing, perhaps, but i like to hang my laundry myself. it’s not exactly a work of art, but i find it very comforting.

7. i like silence. i hardly ever listen to music. i used to love music. i think it’s the fibro. i especially can’t bear more than one sound source at a time.

***

My personal hobbies are reading, listening to music, and silence.

Edith Sitwell
English biographer, critic, novelist, & poet (1887 – 1964)

migraine triggers, resources for the apocalypse, and a tumblr collection

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Migraine Awareness Month #3:   Just shoot me now! What’s your worst Migraine trigger? Can you avoid it? How do you handle it? 

sadly, for little me, pretty much anything in excess can trigger a migraine. i don’t know if this is because of my comorbid (what a word that is, comorbid, you know nothing good is going to happen when a word like that comes up) fibromyalgia or what, but i just flare at anything. this means that i spend a lot of time doing very little and also that i have given up doing lots of things that i love. one thing that i had to give up in it’s entirety is drink. how i would love a glass of wine or a pint of guinness now and then. do you know, even SNIFFING a glass of red makes me feel like someone has just smacked me in the face with a frying pan.

not worth it, just not worth it.

the fact that i no longer have an active social life that involves going out helps me handle it, as does the lack of interest in alcohol of many of my nearest and dearest.

time was when, if you had told me i would have to give up drink completely i would have been completely confused as to how you expected me to LIVE. but i gave it up about a decade ago and have been more or less better for it. there has been the odd occasion where i have thought i might get away with a glass. i was on holiday with friends and there was wine on the table every night with dinner. i did what in france would be considered something you do for children – i had half a glass topped up with water. even this was totally delicious and made me feel like i was joining in. i suffered no ill effects, so that was a WIN.

“National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.”

***

it has come to my attention that we are even more obsessed with the zombie apocalypse now that a man has eaten a face. so it is just as well i saved this helpful article. which shows screen shots of google maps indicating where useful post apocalypse supplies are to be found.

of course, this assumes that there will be internet for the apocalypse, which is not terribly likely, so i should study these maps carefully in advance if i were you. maybe print some out. since my mum was a mormon when i was a teen, i am used to having an apocalypse cupboard in the house.

ahead of the curve, those mormons.

***

yesterday i made ten a tumblr collection. i have changed my theme on tumblr, so was flummoxed when i couldn’t make a day – based collection just by clicking like i used to. but eventually i figured out that if i entered the date by hand on the URL i could still curate a day’s collection like i could before. i am pleased about this, because i really like my new theme there and having customized it a bit to suit my colour preferences i would be sorry to have to find another one. so here it is elaine4queen.tumblr.com/day/2012/06/02

ten’s a fan of peter doig, but most of them are images he has either said that he likes or are to do with his interests, so a bit less arty than usual.

Peter Doig  Target. 2000 more here

fibromyalgia, neurasthenia, dr seneviratne, and me

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the overarching diagnosis i live with is fibromyalgia – but back at the beginning i saw a doctor who offered me another take – he suggested neurasthenia, which, at the time, in the uk, was merely an old timey diagnosis, a sort of whimsical suggestion, i thought. especially since his formal diagnosis at the time was a DSM4 category, unipolarism with mania if given certain drugs. to wit, i won’t get manic unless you give me SSRIs. what fun! and what a lot of shopping i do on SSRIs! (though not as flamboyantly as one manic depressive who thought that it would be fun to drive a red tractor round edinburgh, so bought one before he got sectioned, and had to sell afterwards. turns out tractors are quite expensive).

i mean, you can see his point. tractors are pretty cool.

anyway, what happened was that i became too ill to do my job, took a while to get anywhere near on my feet, took a little backstage job to get me used to working again, got given SSRIs, promptly went mental, presented myself at college to start teaching again, got sent home. end of career. after my initial, quite frightening, experience on the SSRIs, i said that i wouldn’t take psych meds unless they were prescribed by a psychiatrist. why yes, i was a little naive. bless me.

after some months of hanging around, i finally got my appointment. as it happened, the guy i was supposed to see had been suspended because he was accused of sexually abusing a patient. after several months the case was dismissed, and he got his job back (i wouldn’t weep too hard for him, he was on full pay the whole time and was apparently big into speed boats). but, in the meantime, his office was occupied by one saul seneviratne. it was the work of moments to quickly cyber stalk him just now, and i find he is doing very well as a forensic pshychiatrist. i did topicalize his wearing of a clip on tie one time – he told me that he was moonlighting in the cop shop. paid off, too, so it would seem.

now, here in the uk, it is perfectly usual to get bounced around, barely seeing one person twice, and having appointments every couple of months if you are lucky. i guess sene had some time on his hands, because he saw me a LOT. and no, it wasn’t because i was a big time mental criminal, stop thinking that. we talked about a lot of things, including the bands we’d seen when we were at college – being the same age, we had a fair bit in common. in between actually trying to get me effective treatments, he also proposed something more whimsical; what did i think of the idea that i might be neurasthenic?

wikipedia was launched in 2001, and this was maybe just before it’s launch or a couple of years after. don’t quote me. but you can imagine, when i looked up neurasthenia when i got home, i didn’t get quite as many hits as i did yesterday, when, on a whim, i decided to look it up again. what i found out first go round, was that it was a victorian diagnosis for people for whom modern life was really too much. the advice at the time was that the patient should stay in bed, drink hot milk, and have her maid send away visitors. clearly not an ailment for the hoi polloi. this pleased me, sort of, but it seemed irrelevant, since it hadn’t been used as a diagnosis for some time. the symtoms, of extreme sensitivity, pain, fatigue, mental weakness, seemed familiar enough, though it wasn’t many years til i got a positive diagnosis of fibromyalgia. incidentally, i listened to the audiobook of remembrance of things past and it features a character who clearly had fibro or CFS, and it turns out proust was diagnosed with neurasthenia, himself. as was virginia woolf.

i don’t know what prompted me to look neurasthenia up again, over a decade later, but there is a lot more material online now. i was surprised to discover that it is still recognized by the WHO, since it is still actively diagnosed in many countries. it seemed it peaked in the uk around WW1, and as many men as women were diagnosed with it. it was so closely identified with the stressors of modern life, that it was also called “AMERICANITIS”!

i kid you not!

in japan it is treated with something called ‘morita therapy‘. now this i wish i had known about. instinctively i landed myself at the buddhist’s doorstep to learn meditation and mindfulness, and this therapy is a lot about that, but it has other parts to it’s structure i now wish i’d known about. not because i haven’t come to many of the same conclusions about how i need to live, myself, but just not in that order, and perhaps if i had done, i might be in a better state of health today. as it is, i have done the meditation and the living in silence, and quite coincidentally, i have also written journals, both on paper and online. i have quite often wished for the kind of sanitorium that rich folks of yesteryear might go to. sipping hot chocolate on an alp with a blanket over my knees, ministered to by a kind nurse. or looking over the ocean. however, the nhs doesn’t run to such things, and most probably, nor should they. having said that, whatever an actual rest cure might cost, if i were recovered i would be a lot more cost effective, since i am well qualified and have a professional career behind me, and am now contributing nothing and living on the state. who wins at that game?

anyway, it’s nice to see that sene is doing so well. and clever of me to move to the tottenham riviera.


the view from my garden.