Cosmos

Seeing red

2009-05-11T14:41:00.000+01:00

Some of the small amounts of the MP's expense claim scandal seem a bit like nit-picking, but when I saw this one, "£4,800 claimed back for food in a single year by one portly Labour MP." Well, it's nearly enough to make me vote conservative (if they weren't just as bad as the rest) and lobby them to bring back hanging.

If you had any idea how much I'm against both of those concepts, you'd know how mad that means I am.

These no-good, lying, cheating arseholes expect me to abandon my dignity in front of perfect strangers, prove that I'm not an illegal alien terrorist, then to explain things like the workings of my bladder and bowels and be treated generally as though I'm not human, to beg for a measly £3,000 a year, when Mr/Ms Portly here can get over one and a half times that with no argument at all, just out of the petty cash!

Of course, now we know why they expect every genuinely sick claimant to be a lazy, malingering benefit cheat. It's not because claimants cheat at all: this lot are simply projecting their own faults onto the public. The public may have their faults too, but you'd have to be looking up at a snake's belly to stoop as low as these thieves.

Gut instincts

2009-05-11T02:30:00.001+01:00

Too much info perhaps, but for the last few weeks I've alternated daily snacks of dried figs, prunes and apricots, along with dates, on top of regular veg, fresh fruit, loads of bean or chickpea salads, green salads, oaty breakfast "roughage", etc., yet I've struggled to maintain "regularity" and been left, for want of a better term, feeling rather "full of shit."

Yes, I drink LOTS of water, the foods listed should help (I eat boringly healthy), I try to walk when I can ... and it's a situation I had under perfectly good regulation, thank you, in a country where I had better water, fresher fruit and veg straight off the (less chemically castigated) land, as well as decent weather so I could get out and was able to walk more regularly and, needed less painkillers (that also make the problem worse.)

It's been nowhere near as severe this week as while I was taking the amitriptyline that the GP prescribed last year, when more than once, after 10 or more days of being solidly blocked up, I'd get to the point where I could hardly lift myself off the bed, I was so bloated and sick.

Since I stopped taking the amitriptyline, I've really had to battle to get back into a decent rhythm and I really don't ever want to get into that uncomfortable situation again, so on Monday or Tuesday, I took one of what are now packaged as "Constipation Relief Tablets".

Now, is that the "politically correct" alternate wording to "laxative" - you know, why use one perfectly good direct word, when three slightly euphemistic ones will do? Or is it dumbing down, because no-one knows what a laxative does any more? If the latter, will the ignorant masses know, or even care, what constipation is?

Or, heaven forbid, could it be "prohibited" to use the word laxative these days, just in case someone with an eating disorder is tempted to abuse them?

... anyway, it took until Sunday to see any effects.

Yes, really. Next time I'll try dynamite.

(NO, I won't and don't try that at home either!)

But, of course, when one suffers IBS (actually diagnosed, by a GP in the UK, in 1980), there are no moderate effects, no middle-ground nor happy mediums.

The eventual result ... was so significant, anyone would be forgiven for thinking that I had used dynamite!

And it also left me with a terrible bloating, an awful stomach ache and, I'll certainly qualify for the 2012 British Olympic Farting Team! Next time, I'll just drink more water and try to go for more walks, weather permitting, pain and fatigue permitting.

I've also been conducting a one-woman trial (which is probably more impartial than some other studies carried out) over the last few weeks to see if I could discern any positive benefits from a daily dose of Yakult.

To begin with, I think we can safely say that in the area of "regulation of bowel habits and constipation" or of gut flora maintenance, I cannot report any at all.

The other reason I wanted to give that a try was having read about the pilot study which claims that, "Supplements of Lactobacillus casei strain Shirota may ease symptoms of anxiety in people with chronic fatigue syndrome (CFS), according to new research funded by Yakult."

It may be fairer to give it a longer chance, but I can't say I've noticed any huge difference in my mood. Overall, I think I'll save my money and avoid the massive sugar hit - which is never good for anyone's gut, surely.

The great disenfranchised

2009-05-10T14:43:00.000+01:00

"Jobbing Doctor feels completely disenfranchised. I cannot vote for a party that has caused such damage as New Labour, and will not vote for the Tories (more of the same), or Liberal Democrats (who have completely lost their way)."

A similar (if somewhat derailed) train of thought recently led me to muse over the suitability of the Official Monster Raving Loony Party (though I still think a much better option would be to leave the pox-ridden country.)

Sleep disturbances linked to increased suicide risk

2009-05-10T14:27:00.001+01:00

You may be surprised that it's from "too much sun":

"Despite a belief that suicides tend to rise in late autumn and early winter months because of darkness, the new findings suggest that places where constant sunlight in summer seasons is a fact of life may be just as dangerous," says this report.

Actually, I can perfectly understand why, because as much as I hate winter when it seems to be always dark at this latitude, the fact that it gets light way too early in the morning at this time of year is waking both me and the cats up half way through the night. This is playing havoc with my sleep patterns - which were pretty disturbed in any case - and is contributing even more to making me feel constantly tired and strung out.

Disturbed sleep, as we know, can contribute to the pain of fibromyalgia, increasing muscle stiffness, exacerbating fatigue, and heightening depression. And when that's 24/7, it really is only a short hop, skip and a jump to feeling so desperate you want to end it all.

Another reason for those of us with these disorders to live closer to the equator where not only does the warmth help, but there are less notable differences between daylight hours in summer and winter.

A bad week

2009-05-09T17:48:00.001+01:00

Last Sunday night / Monday morning, I'd still been awake at around 3.30 a.m., finally managed to doze off, but then woke again at 6 a.m., feeling like the proverbial death warmed up. Each day I've felt as bad, if not worse so I've tried my best to rest, hoping to recover enough to get something done. Now, at the end of the week, I still haven't managed to get over it, instead dropping ever further down into the pit of pain and exhaustion.

Really, I'd wanted to write something each day this week (because I'm supposed to be keeping a note of my symptoms), but I've honestly felt too ill to do so.

Today I woke up with extreme nausea and the very same pain in my back, in the region of my left kidney, that I'd had when all this started - when I was rushed to hospital as an emergency - way back in 1995. [1] Every time I get stressed and tired, that same pain, nausea and terrible malaise and, along with it, incredible thirst and even more frequent peeing than usual, returns.

Most mornings this week I've woken up way too early, though fortunately, I've managed to get back to sleep again, but then I've woken late, with a headache.

And on top of the headache, as the week wore on, my symptoms have increased in number and/or intensity and include; flu-like all over aches, shivers and / or sweats, stiffness in my neck and shoulders, my biceps and triceps feel so weak and ache so much that at times I've hardly been able to lift my arms off the bed, carpal tunnel pain just won't go away - a couple of hours rest and I can just type for another 5 minutes but it hurts so much - my lower back aches (but then it has, constantly, since I was 16), the pain in my hip (from a fall in 2001) is excruciating to the point of tears, my thigh muscles are tight and feel like they've done a marathon at sprint pace, my knee joints hurt beyond anything I can put into words and have to be constantly "clicked" to relieve the pain; my calf muscles feel like they've been dancing day and night in stiletto heels; there's a pain down my shins I can hardly describe - a drawing down feeling accompanied by a bruised feeling like they've been beaten with a baseball bat - and that's so bad it makes me feel sick to my stomach; my feet hurt everywhere and whenever I stand up, I feel weak, exhausted, lightheaded, my eyes close involuntarily and am overcome with a feeling that I'm either going to faint or nod off to sleep while walking (just to the kitchen), I become short of breath, get chest pains and need to lie down again within only a minute or two.

On Thursday, I'd made it to go out - against my better judgement, partly because I had to go to the bank and partly because I'd been invited to an important meeting - but I'd had to sit in a chair for much longer than my body can cope with and got I colder than my body can stand, so the post-exertional relapse is worse than ever.

This afternoon, to attempt to clear my head and keep myself moving so I don't totally cease up, I walked (all of a couple of hundred yards) to the local corner shop. It's May and the sun was shining, but the wind was a bitter and biting cold. I can no longer walk fast enough to keep warm and it makes no damn difference how well I wrap up against it, so this cold just gets right into my bones and makes every ache and pain hurt even more. Not even half way there, I'd really had enough. By the time I got home, I was literally dragging one foot after another, hurting so much and so exhausted, I just want to cry.

It actually seems that every time I go out, the negative effect and the severity of the pain and symptoms I suffer afterwards keeps increasing. I'm trying to do what I can, particularly to get to support groups and things which should - theoretically - help me, but it's constantly a "one step forward, two steps back" scenario.

This week the pair of Reebok Freestyle that I ordered arrived, so my ankles were more supported and are not in quite as much pain as they have been on other recent outings I've had to make in shoes or sandals, however, despite taking buses and keeping my walking down to a minimum, these are not as good as the boots with thick rubber soles I used to be able to buy in Spain and the soles of my feet and heels feel bruised and beaten.

No matter how much I rest, it's is never enough and I never "get over it". Because I have no help, not enough public transport, etc., it's impossible to pace activities avoid the "all or nothing" approach that leads to these constant relapses and, no matter how much I want to keep doing a little, I am constantly able to do less, rather than being able to build it up to more.

I just don't see a solution though.

[1] Note here it says, "You have to have 4 of these 8 symptoms for six months or more to meet the research definition for CFS." Well, I've had all 8 (and the rest as well as at least 61 of these fibromyalgia symptoms) for 14 years. For the last year, due to the British climate, additional stresses and other reasons, the symptoms of these have been worsening in severity and now impact and add restrictions on every aspect of my daily life. In November 2008, I was finally diagnosed with both Fibromyalgia and Chronic Fatigue Syndrome.

Pop-up world

2009-05-04T14:47:00.000+01:00

Graphics provided by MySpaceGraphicsandAnimations.org

Hooray for bank holiday rain

2009-05-04T14:45:00.000+01:00

As everybody in the world knows, the one thing that's guaranteed on a bank holiday in Britain, is crap weather and, the grey skies that turned to drizzle today being no exception.

Can there be anything more dreary than drizzle on a bank holiday?

There are, however, reasons to be cheerful; a chink of light in this dismal darkness; a hint of silver to the lining of the charcoal clouds ...

On the one hand, since there is absolutely no public transport running on bank holidays, if the weather is bad, one does not feel quite so depressed at not being able to get to any events that might be on.

And as soon as it started to rain, the 'effin bastard who thought it fit to mow his lawn on a bank holiday (there really does need to be a law against this kind of noise nuisance, as there is in other places), had to stop.

Thank goodness for that! Having still been awake at 3.30 this morning and then woken up again a 6.00, I needed this like a hole in the head.

Someone, please tell Microsoft about broadband

2009-05-03T14:49:00.000+01:00

Got this message while updating to the latest version (3.5 SP1) of Microsoft .net Framework today, "Download complete. You can now disconnect from the Internet."

Disconnect???? OMG WTF? This would have been useful, in rural Africa, in 1999!

Feline empathy

2009-05-01T14:50:00.000+01:00

Oh, how I wish humins could be more like cats, you know; understanding, empathetic, intuitive, kind ...

This morning after breakfast, these two were sitting, looking out of the back door, so (as you do) I asked them if they'd like to go out for a walk.

Fresh air is probably good for cats too.

They're generally reluctant and don't want to go out alone - you can open a door and they run indoors away from it, or they hide under the bed covers from an open window - so taking them out for a walk means on a lead.

Walking one cat on a lead is hard enough, as you'll know if you've ever tried it. Two is never this simple.

The problem is, if I take Balu out on his own, Kitty follows us around the windowsills and doors in the house, upset and crying for her brother.

And if I take Kitty on her own, she's nervous and afraid out there.

So, against every shred of better judgement I may ever have had, yes, I attempt to take two nervous cats out, on leads, at the same time, without a safety net or an adult present.

Provided they both want to go in the same direction at once, this should work out just fine, shouldn't it?

(Hmmm, I seem to remember the time I walked two dogs on leads and nearly had my arms torn out of their sockets at every junction as they wanted to go in opposite directions and shopkeepers calling out that all I needed now was a pair of roller-skates as the dogs took me walking, briskly and more or less wherever they liked.)

But to my absolute astonishment, with only a little tug here and a firmly placed boot up the bum there and, as long as nothing untoward happens - like someone making a faint noise anywhere within a 100 mile radius - mostly, it does work out fine with the cats and they walk around the garden, chew a bit of grass here, or sniff a flower there, in unison.

Sometimes I have to pick one up. Seldom both, thankfully.

This morning, they took me - walking with minimal zig-zagging - right across the garden to the far reaches of the farthest corner, where there's a gap in the fence: I reckon they have that sized up for a rapid escape if they ever did try to go out alone. And there, they spent quite some time nonchalantly sniffing plants and the wind and watching birdies.

They were engrossed, but I was knackered and my legs were beginning to hurt (it only requires standing in one spot for more than 1 minute), so I said to them (as you do), "Come on, can we go in now, my legs are beginning to hurt."

And truly, with no further prompting, they both headed off in unison, leading me across the grass, along the path around the house to arrive at the back door and sat, waiting to be let in. I had to go apace to keep up.

Nationwide, if you're listening, you're about to lose a customer

2009-04-30T15:03:00.000+01:00

When I came back to the UK last year, I needed to open some sort of bank account, which sounds simple, but it isn't. The credit crunch has bitten this one in the hiney, because if you're an unknown alien because you've been abroad for 16 years (isn't it time that your perfect banking record in another European country counted?) and, have the audacity to be chronically ill and on benefits and not have a job, then you're a persona non grata.

I discovered that I couldn't even open a new account in the UK with a bank with whom I'd already had a relationship for 15+ years, as even for that I had to pass credit checks and needed something like a utility bill in my name (which I cannot have as I’m living in someone else’s home), or a copy of a UK bank statement, which I can’t get because I don’t fulfil the requirements (bleeding obviously).

I was annoyed at that, because I'd made the point (and spent the money) to phone them in advance of moving to check that I would be able to open the new account. They'd said "Yes, no problem, phone us when you get to the UK." So I did and they said no.

(They don't seem to have as much trouble paying their former chief executive's excessive pension.)

Being unreliable: promising things and not delivering, seems to have become par for the course here.

Next, on recommendation, I tried the Nationwide, billed as "the only UK financial institution to offer completely fee-free transactions (both electronic and cash withdrawals) worldwide with their VISA branded debit cards" and explained, clearly and honestly, what I wanted: an account into which my benefit could be paid and with which I could have a debit (NOT CREDIT) card for making purchases in shops and online.

I assumed getting cash out of a machine was a foregone conclusion, although I'm less interested in that and explained this to them, because the machines are not close enough to home and I'm not always well enough to get to them; for the same reason and that I cannot carry much shopping the ability to buy things online is far more important to me and, in any case, I don't like to get too much cash out in the street or carry it around with me.

Nationwide said yes I would get a debit card. They let me open the account and pay in cheques for around £1,000 in back payments and continue to have my benefit paid into it.

When the card came, of course, it was merely a cash card on the Cirrus network that isn't used in the UK, except by their cash cards. It's not a debit card, can't be used in shops or online and can only be used for getting cash out of machines.

When I went into the branch to point out to them that I had not received what I was promised, they then refused me the debit card and gave me a letter that said, "This is because the account has been open for less than 7 months" and continued that they may be able to offer further facilities after that time.

Changed to only may, not that they will.

Apparently, you need a credit score, to have access to your own money now. That, I find ridiculous enough after 16 years of the "no overdraft" banking system in Spain that could give me this facility, but what really angers me is the dishonesty: get your money with false promises, then change the rules.

The 7 months passed (and quite a quantity of money has accrued in the account, by virtue of the fact that I can't get at it and I've been forced to put up with this difficult situation, suffering unnecessarily through the inconvenience of having to go without items that could have helped me to live more comfortably.) So yesterday I went into the Nationwide branch, with the refusal letter, to ask again.

And they still refuse to budge and still refuse to give me that promised debit card.

So I calmly asked them to give me details of how to contact the Banking Ombudsman so that I could make a complaint. The girl was very slow getting me this information, but finally came back with a couple of leaflets, one on how to complain and the second (which I find offensive) reiterating the rules "for customers applying to Nationwide for credit" (which I'm not.)

Willfully ignoring my actual complaint, she whined sullenly and, unapologetically - you know the sort, obviously trained to treat the customer as if the bank is doing us a favour, not the other way around - that "there was no guarantee" that I would get the debit card [when I'd applied.]

"Oh yes, you would say that now," I quipped!

That's. Not. The. Point.

Last year there was a story in the local rag telling us that staff of the Nationwide Building Society in New Milton were being forced to quit their jobs because of the abuse they were suffering from customers. This was being put down to "impossible 20 minute waits", but I think we know what the real reason for people's frustration most likely is.

And, if that wasn't enough injury from them for one day, I got home to find the added insult of a letter waiting for me about a:

"Change to your FlexAccount: Non-sterling Visa debit card transactions"

Oh, this would be changes to conditions appertaining to the very card I DO NOT HAVE, would it?

So does this mean I should have a debit card, after all, or what? Who can tell? Their timing was certainly impeccable, if offence was what they intended to give!

In the meantime, I'd popped into a branch of another popular high street bank and asked to talk to someone about the possibility of opening an account. I explained exactly what I wanted and why because of my illness, what I had been refused and where; that I have no credit history, that I'm on lower-than-pocket-money-rate benefits, but I really don't want to go through this all over again, i.e. could they give me an answer before going to the trouble of opening the account and moving the benefit payment, etc? They could and they did and, apparently, I will have an account with interwebs banking and a card that works on the Visa Electron system (just as my Spanish card did) within 3-5 days. It offers most of what I need. I'll not hold my breath until I actually have it in my hand, but let's hope this is 3rd time lucky. :)

Nationwide presumably don't offer this card and that's their prerogative, but they need to train their staff better and there can be absolutely no excuse for pretending that they will offer a service, then not doing so, whilst keeping the customer (and her money) effectively captive for 7 months.

The unfreezing of Iceland

2009-04-27T15:08:00.000+01:00

Iceland, the country, not the supermarket, looks like a bloody inhospitable place, but perhaps conditions there will warm up a little after their election results that have seen the country "veering left for the first time to hand a parliamentary majority to social democrats, socialists and greens and humiliating the rightwingers who have dominated for generations."

Now I make no apologies for the fact that I really quite enjoy watching rightwingers humiliated.

The thought that has crossed my mind frequently though in the last few years - and this news has caused it to do so again - is what will happen at the next election in the UK?

Since it's Labour (the left) that's screwed things up royally in this country, there's no point (nor even chance, I reckon) of things veering any further in that direction for the foreseeable future, but the right wing is just as likely to make it worse as it is to make it better. And, personally, my money isn't on any of them making anything better and that's not because I'm being negative.

The Conservatives are just not who I would vote into power, when people more than ever need things like the wealth redistributing and social care to make up for what the economy and the planet can no longer provide.

Right wing policies would have to do complete U-Turns from what they have traditionally been, before we could even hope for them to be what it is that we want them to be.

Whilst I can fully imagine the average voter in Britain venting his fury too at the next election in the UK [1], I also think folk will generally ignore the negative possibilities and simply vote for what they perceive to be the complete opposite to whoever is in power now, expecting things to turn around, as if by some kind of magic.

Sadly, that doesn't happen.

As Mahatma Gandhi said:

“Be the change you want to see in the world.”

America voted (rightly, I mean, leftly, I feel) for change, but I think it's taken one or two by surprise since, that Obama doesn't actually have a magic wand and, in fact, all along - if had folk really listened - was advocating just that: that the American people themselves needed to be (and with a vote chose to be), the change they wanted.

I guess one is entitled to hope, but Brits tend to be even less open to change, so there's probably not much mileage in that plan over here!

The Greens in the UK do not have a fat lot of organization (I could hark back to the time they were constantly spamming me for an example of how clueless they really are about all-important realities of how the internet works); the Liberals have always been plagued with the reputation of being the "wishy-washy party", whether that's true or not.

Labour - self-billed as "Britain's democratic socialist party ...", are the socialists in Britain.

That surprised you, didn't it? Given many of the directions they've been taking over the last decade or so, I'd drum them out of the Socialist International for breaches of the Trade Descriptions Act 1968 and it's successors. And they continue to constantly shoot themselves in both feet, with the political equivalent of an automatic machine gun.

Given all of this, quite seriously, what options does the UK have?

Not one single one that I consider viable, that much I know.

Answers, on a postcard, please, to 10 Downing St., London.

[1] Next United Kingdom general election "... the election may thus take place in 2009, in keeping with the general practice of parliamentary terms being around four years long, or in 2010. Barring exceptional circumstances, it must be held on or before Thursday 3 June 2010."

(Personally, I think I'll endorse - I might even join and stand for - the Official Monster Raving Loony Party. A much better option would be to leave the pox-ridden country behind.)

Technorati Tags: iceland,elections,politics,britain,uk,labour

Earth Day

2009-04-22T15:16:00.000+01:00

"The ultimate test of man's conscience may be his willingness to sacrifice something today for future generations whose words of thanks will not be heard."

Earth Day | About

Fashion for the fat over-fifty with fibromyalgia

2009-04-21T21:28:00.001+01:00

Getting dressed, let alone being stylish, takes an awful lot for granted: things that, if you're in perfect health, you won't even think about. Fibromyalgia takes all that away.

You won't get any fashion tips here, I'm sorry, but I'll have a jolly good whine that will make me feel an awful lot better when I'm done, thank you. Maybe, once you've read it, you'll understand why we can't always do much to improve our appearances - this does not indicate that we do not want to, because we really would like to.

Maybe you'll understand why fibromyalgia causes depression (no, it isn't the other way around) and, imagine yourself in our (very painful and uncomfortable) shoes.

Probably foolishly, I answered this quiz, Are You Stylish? ... knowing full well what the answer was going to be (personal sarcasm inserted in italics):

You Are Not Stylish (No, they don't say?) To be honest, you think fashion is a complete waste of time. (Yup and, worse, it encourages consumerism, planetary destruction, wage slavery, etc.) You don't really care about how you dress, and those who do are simply superficial. (Mostly agree.)

While you don't have to look like you stepped out of a magazine (Oh, I know I could, but it would be the "BEFORE" picture. LOL), maybe you should update your wardrobe. People treat you better when you look better. Besides, it's fun to express your personal style!

I'd love to update my wardrobe, actually, but there are around 1001 reasons why it's difficult to do. I really don't give a flying-fig about appearances, just for appearances sake, because there are far more important considerations in life, but one still cannot escape that such things do have an effect on the way others view and treat you and, it has a large impact on the way I view mirrors - I avoid them like the plague.

Budget has a lot to do with it: the amount of handouts / benefits I've had for the last decade and a half hasn't provided money for clothing at all, so I've had to rely on charity for the money, or the clothes themselves. For this reason, I avoid colours that are likely to come and go in and out of fashion. The inability to get to shops where there is a choice; because of the fibromyalgia, lack of transport, costs ... restricts further.

Compared to many people, I'm not THAT old or fat (yet), but enough that they do make an impact on what looks nice and what's suitable too (i.e. nothing I actually like.)

Yet it SHOULD still be possible to reflect some sort of personal style that one is reasonably happy with, no matter what the circumstances. However ... though I don't tend to let on exactly how I feel about this, what I end up being forced to wear and how I look, because of a long list of challenges, has become really depressing.

And whilst I think nobody would accuse me of being vain, I really do miss the person I was and the things I used to wear that were even halfway decent. When I was younger, I didn't follow fashion either: I set trends and then other people wore them.

In the 70's I wore those huge platforms and heels and I long to again and can't ...

The contrast between me before and now, would be like comparing Lady Gaga with Susan Boyle and, with all due respect to the latter, I don't think she's anyone's idea of a style guru, or what any reasonable person hopes to look like in the AFTER pictures.

"Not only do you have to be physically appealing to deserve fame; it seems you now have to be good-looking to merit everyday common respect. If, like Susan (and like millions more), you are plump, middle-aged and too poor or too unworldly to follow fashion or have a good hairdresser, you are a non-person," The Herald points out.

Is it any wonder that I feel a really profound and aching sense of loss; of my identity, of my dignity, my personality ... my very being? This psychological pain, which results from the physical, feels as though it reaches right down into the depths of my very soul.

Oh, I suppose a certain amount of this is inevitable as we age, but the fibromyalgia takes this to an extreme I just can't cope with: it's like somebody died - me!

Showering and hairwashing have become real chores. I'm starting to have problems getting in and out of most baths - I certainly couldn't sit in one, because of recurrent cystitis - and would have trouble lifting myself out, but balancing to wash myself in the shower, or even standing there long enough to do it (complicated by cold temperatures and abnormally low water pressure) has meant that this has become difficult and painful. Unless I have to go somewhere now, I just don't volunteer for the extra pain any more. Do you have any idea how disgusting, degrading and undignified this makes me feel?
The style of my hair (well it can't have a style) has long been restricted to something that I can just wash and leave and then tie back for the remaining days while it's greasy and lank, because pain and stiffness mean I can't manage to wash it more frequently, nor can I do so other than in the shower, nor style it even when I do manage to wash it. Some colour would probably help lift my mood, but I can't easily manage to do that myself now either and I certainly can't afford to keep going back to the hairdressers to keep it maintained.
I've worn a little make-up for a special occasion once in around 10 years, because foundation gives me a rash or zits, eye make-up irritates my eyes to the point of pain and blindness, lipsticks (even new ones) provoke cold sores ... but I still feel like something the cat dragged in without some finishing touches.
Niceties like underarm and leg hair removal (don't even talk about other parts), were abandoned years ago, because whether it's shaving, creams, waxing or whatever, it causes a rash and burning that looks - and feels - like I'd tried to remove it with a blow torch. Swimwear, sleeveless tops and skirts are out.
Because they rub my skin raw I cannot comfortably wear any sort of bra, no matter how soft, but, because I have two very noticeably unmatched boobs that act like a pair of oversized and underset blancmanges intent on wobbling then collapsing downward, plus huge, protruding, dark nipples ... all I can I wear are huge, dark coloured (usually black) baggy tops. Of course, I feel like I'm wearing the style equivalent to a bin-liner. Got a better idea that doesn't hurt?
Same goes for anything like waistbands, or any fitted clothes, or anything made from firm, solid fabrics. I can only wear stretch jeans for short periods of time, so I'm mostly restricted to track pants with loose, elasticated waists. Oh, I know, let's make them black to match the tops. It may be uninspired, unflattering and a tad gothic, but I'm happier with that than the wardrobe equivalent to magnolia walls: beige or grey, or worse, the matronly colour of choice, navy blue!
Also because of 35+ years of cystitis, I cannot ever wear tights and have to restrict any fitted clothing on my bottom half to short lengths of time. Clothing I wear regularly has to be looser and made from mostly natural cotton fibres.
When everything aches, just putting clothes on is difficult or painful, so again, they have to be as easy as possible to manage with fabrics that give and fastenings that are easy (or preferably no fastenings that would dig in.)
And nothing that ever needs ironing, because I can't stand up to iron and my wrists couldn't lift / operate an iron anyway, even if I sat down.
Footwear is just one hell of a nightmare. Any amount of heel whatsoever will cause pain, so that rules out anything smart and everything I like. I can't wear anything made of a stiff material, stitched or reinforced in any way, because it will rub sores, blisters or deep gouges in my feet within 20 yards - then it can be days before I can put shoes on or go out again (and this is in addition to the fact that my feet and legs are already crying out in pain.) Almost all sandals rub wherever they touch and, the few I've found that I can wear are hardly suitable for the UK winter. Come to think of it, with the amount of rain, they're about as useful as a chocolate teapot in the UK summer too. Closed-in shoes are never suitable, because I have low ankle bones and every shoe I've ever tried rubs on that bone - now that causes blisters virtually immediately. In any case, any shoe that doesn't support my ankles is only comfortable as long as I don't walk further than a few yards: after that, I feel like my ankles have been twisted or broken. Booties that come up over and support my ankles are the only footwear that I find even remotely comfortable or suitable. But try finding some that are not too stiff, that don't cause blisters, are sold in my size, at a price I can afford, in the UK. Oh and they must have cushioned rubber soles, because the undersides of my feet hurt like they're bruised after walking a few yards otherwise and, soft zips or Velcro fastenings, because I can't manage laces, or buckles that rub, or dig in somewhere. I can't find any and, even if I could, you'd hardly call them stylish and they wouldn't enhance stylish clothes. And of course, they have to be worn with socks - which have to be made predominantly from natural cotton, or they'll make my skin raw. And just trying to put socks on is a task that takes it out of me that, by the time I've done it, I feel ready to call it a day and lie down ...

So, yes, I've developed my own lazy "non-style", because there's no other possible way to deal with this level of pain and sensitivity. And I've been coping with this for years, in silence mostly, so it isn't obvious exactly why: it just looks like I gave up living.

There really aren't that many choices left and, despite knowing the result is unstylish and crap, I'm forced to accept this as comfortable enough for everyday, doubling nicely as my pyjamas. How do you think you would cope with such restrictions?

I'm a tourorist

2009-04-21T15:19:00.000+01:00

Yesterday, with some time to spare before an appointment there, I ventured to have a slow stroll around the attractions in Christchurch, Dorset. The above is one of them: the watermill, which sits alongside a murky brown bit of water. Wilkipedia tells us that it's unique, in that it is the only known mill which takes water from one river (the Avon) and spills it into a second river (the Stour). Yes, really fascinating, thank you, but it's still murky! At least, unusually, the sun was shining and there was a blue sky, eh?

Good weather in Britain is not the only short-lived thing. Hospitality is pretty rare too.

Christchurch is a tourist spot - I even overheard someone speaking Spanish yesterday - though solo Dios sabe (only God knows) what they will have made of the place.

And God, if he ever existed, will have died of shock and be turning in his grave by now, seeing how tourists - or more aptly, as Tom Paine calls them "Tourorists" - are being treated in his house in Christchurch.

Not only would you think that the whole damn country should be tripping over itself to please this sudden influx of visitors benefiting from the weakened pound - it's much cheaper to please and keep an existing customer than it is to find new ones - you'd think the church would be scrambling to welcome people, given how Godless and unbelieving we've all become. Or maybe they've given up?

As I strolled into Christchurch Priory yesterday, being a tourorist, I had a camera in my hand. Nuffin fancy, just a small Kodak digital pointy-shooty thing. Ya know, only one step up from the other camera in my bag: the one included in my mobile phone. Not that I wanted a camera in my mobile phone, but you can't get them without these days ...

From which I mean to underline that every single person who enters the building is probably carrying some sort of terrorism device, I mean, is armed with a camera.

Yet despite (or is it because of?) this whole backdrop of circumstances, Christchurch Priory are determined to make visiting as complicated and unwelcoming as they possibly can. All, it seems, for money.

I'd only just got inside the door, but not even had time to glance around when a woman in a blue ecclesiastical looking smock thingy accosted me and asked if I was going to take photographs. Well, since I had only just arrived and hadn't even looked around, I really had no idea if I was going to spot something that would inspire me to do so and responded thus; that I wasn't sure, honestly.

Remember, my camera is the sort of thing every tourist is carrying: it's not like I still have my Pentax with a lens so large that it would have stretched across the River Stour - that I could have held like an UZI machine gun - or made me look like press or anything.

But, I was told, as this ecclesiastical guard dog pointed toward a booth in the middle of the aisle of the church, that I had to "PAY FOR permission and get a badge." (Yeah, just to only maybe take the odd crappy snapshot with a Kodak EasyShare V1003.)

Paraphrasing the immortal words of John McEnroe, they "... can not be serious!"

But, those were the words I heard tailing off into the distance as I turned on my heels and exited, swiftly, without a word. I didn't think this assault even warranted a response. And, I don't think the Priory deserve my business if that is going to be their attitude.

Yes, I did (wrongly, as it turned out) assume that this might have something to do with the current climate of fear, where photography is being turned into a crime, but apparently, this money-grabbing approach at the Priory is well known locally and has been going on for years.

Listen, I really don't mind churches getting in my face to beg for money for the roof fund and, to be honest, I wouldn't even mind them charging an entrance fee up front at the door - I'm aware that buildings like this require a lot of upkeep - but it's the manner that this is being done that is leaving a bitter taste.

Truly, I wish I had time, energy or inclination to make a detailed study of Canon Law until I found a buried clause about "Thou shalt not stiff thy flock with jumped up photography charges", or some such equivalent.

My advice: do the same, refuse to patronize establishments with faulty, nonsensical and unwelcoming policies such as this, then eventually, when the penny has dropped that they can no longer get away with it, they might amend them to something better.

More crappy snapshots from Christchurch

500th anniversary of Henry VIII's ascension to the English throne

2009-04-21T15:17:00.000+01:00

diamond geezer is doing an interesting series of posts this week on my favorite old tyrant.

And, if you haven't read it already, I really do recommend The Autobiography of Henry VIII (Paperback)

What is Fibro Fog?

2009-04-16T22:32:00.001+01:00

While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening.

Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. While research on fibro fog is scarce, experts agree that it is not the result of Alzheimer’s disease, dementia, or other brain function deterioration condition. Of utmost importance is recognizing that fibro fog can be managed and with the reduction of fibromyalgia’s other symptoms, the cloud of fibro fog will also fade away.

Symptoms of Fibro Fog
Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including:

· Mental confusion
· Fuzzy thinking
· Short-term memory loss
· Inability to concentrate or pay attention
· Language lapses

Fibro Fog Causes
The same lack of information as to fibromyalgia’s origin also surrounds fibro fog. While a variety of causes have been proposed, including depression, decreased oxygen flow to the brain, certain medications, poor nutrition, and changes to the Central Nervous System (CNS), most experts agree that sleep deprivation is the primary culprit of fibro fog.

Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.

Physical Link
Temporal lobe brain abnormalities appear to mimic the presentation of fibro fog.
According to Dr. Jay Seastrunk, a psychiatrist specializing in fibromyalgia, if the temporal lobes are mismatched, there will be trouble with memory, recall and concentration. “Cognitive dysfunction is a right temporal lobe phenomena. Multiple mood swings, trouble sleeping are all temporal lobe abnormalities. Temporal lobe is responsible for understanding what we hear, retrieving and restoring our memories even though the patient may feel they have difficulty with their memory. The problem is actually the retrieval of this information. Not being able to find the word or you forget what you are going to do, or blocking, is a left temporal lobe phenomena.”

Dr. Muhammad B. Yunus, a leading chronic fatigue syndrome and fibromyalgia researcher, suggests that SPECT (single photon emission computerized tomography), PET (positron emission tomography) and BEAM (brain electrical activity mapping) scans of the brain demonstrate that fibro fog is a physical anomaly. According to Dr. Yunus, “Cerebral blood flow imaging by SPECT, PET and BEAM have been reported to be abnormal in a large majority of patients with CFS (Chronic Fatigue Syndrome), showing a pattern different from normal controls and those with depression. Results of SPECT, PET or BEAM studies specifically in fibromyalgia have not been reported, but a good number of patients with CFS who had these tests carried out with abnormal results also had fibromyalgia.”

When considering both Dr. Seastrunk and Dr. Yunus’ contributions, it is clear that fibro fog is represented by physically visible brain variances.

Managing fibro fog
Since fibro fog is believed to be directly related to non-restorative sleep, putting all of one’s resources into getting good, quality sleep is crucial. In addition to seeking professional assistance (and possible physician-prescribed sleep medications), the following suggestions may be conducive to getting a quality night’s sleep:

· Adhering to a regular sleep routine – going to sleep and waking at the same time each day
· Providing a relaxing atmosphere prior to and during sleep
· Limiting caffeine and food consumption near bedtime
· Listening to white noise prior to and during sleep
· Sleeping on a high quality mattress
· For pain reduction, using pillows in bed to cushion any sore spots
· Using natural sleep aids (always consult your physician)

In addition to focusing on getting restorative sleep, The Arthritis Foundation® shares nine tips to minimize fibro fog’s impact during the day:

1. Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind.

2. Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you’re afraid you won’t remember something, putting pen to paper can help.

3. Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day.

4. Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

5. Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory.

6. Stay active. Physical activity, in moderation, can increase your energy and help lift your fibro fog. Speak to your doctor or physical therapist about an exercise program that is right for you.

7. Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help.

8. Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember.

9. Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don’t take on more than you can handle at once. Stress and fatigue will only make the situation worse.

Fibro Fog Hope
As one of fibromyalgia’s most frustrating components, there is hope for fibro fog sufferers. Understanding the following about fibro fog will allay many accompanying fears:

· You are not alone in suffering with fibro fog
· Fibro fog is not a psychological condition
· Fibro fog is likely a result of non-restorative sleep disturbances
· Improving sleep can reduce fibro fog
· There are many ways to reduce fibro fog’s prominence in your life

The best news of all is that many individuals report that being committed to managing their fibromyalgia (by integrating western medicine, alternative medicine and lifestyle changes), has resulted in their fibro fog fading away.

References:

Yunus, MD, Muhammad B., Chronic Fatigue Syndrome and Fibromyalgia Syndrome: Similarities and Differences, University of Illinois College of Medicine at Peoria, Peoria, Illinois.
www.arthritis.org, Clearing the Fog, Arthritis Foundation, 2006.
www.disabilitysecrets.com, Fibromyalgia and Brain Fog or Fibro, disabilitysecrets.com, 2006.
www.drlamb.com, Clearing the Brain-Fog of Fibromyalgia, The Pain Reliever Corporation, 2006.
www.geocities.com/HotSprings/Falls/8173/neurology.html, Neurological Effects of FM and CFS.
web.tampabay.rr.com/lymecfs/brainfog.htm, What is Brainfog and how significant is it?, Marilyn J. Kerr, RN, 2001.
www.suite101.com, Fibromyalgia: Fighting Fibro-Fog, Tamara Peters.

This article was prepared for FibroManage.com. Visit us to learn more about fibromyalgia signs, symptoms, and treatments.

Article Source: http://EzineArticles.com/?expert=Nicole_Cutler

It is 5am. It’s a horrible, ugly hour to wake up

2009-04-16T18:49:00.001+01:00

So well written, although it brought tears to my eyes as Christine Miserandino could well have been describing my all-too-frequent experience. Anyone who has not lived with 24/7 chronic pain should read this and weep (and consider there's something seriously wrong with you if you're still unable to empathize.)

"I feel as though every muscle across my chest is black and blue, but the evidence of that is not visible. My body feels achy and cold. My bones are rubbing against each other and I can feel it in every joint. I never knew everything could hurt even your pinky finger, but it can and does. I feel like there is no lubrication, nothing to help my joints move freely and easily. If this pain had a sound, I could only imagine it to sound like metal rubbing against metal, loud, painful and screeching. I am so tired I can barely keep my eyes open, but pain doesn’t allow me to have rest. My eyes lids flutter and tear with exhaustion ..."

It is 5am. It’s a horrible, ugly hour to wake up, not yet morning, not quite night.

Flogging dead horses is inhuman

2009-04-15T11:03:00.001+01:00

This just angers me, but, of course, it's no surprise.

"94% of ME/CFIDS/CFS patients do not improve with CBT (Cognitive Behavioural Therapy) and GE (Graded Exercise) on the UK Governments own treatment regime for ME/CFIDS/CFS - yet these psychological interventions are the ONLY ‘treatments’ allowed by the Department Of Health (DOH) in the UK."

And my initial thought - knowing how it feels - on hearing about the 6% success rate, was to wonder if that 6% had actually been misdiagnosed in the first place.

Exercise really won't make it better

2009-04-14T22:39:00.001+01:00

Fibromyalgia patients have "an absence of exercise-induced analgesic response", which appears to prove (as we find) that exercise doesn't help us reduce pain or, if you want the longer version, "Isometric exercise has opposite effects on central pain mechanisms in fibromyalgia patients compared to normal controls."

Remind me to point this out to my GP some time.

Brainwashing and torture won't cure us

2009-04-12T16:29:00.001+01:00

The Countess of Mar, speaking in the House of Lords on March 18th:

... CBT is rarely offered without GET and ME patients know only too well-and their views are supported by some 4,000 papers on scientific and clinical research-that GET makes their symptoms worse.

CBT = Cognitive Behavioural Therapy (Brainwashing)

GET = Graded Exercise Therapy (Torture)

Honestly, no-one would choose to continue to exist (you could not call it a life) with an invisible illness, if all their ills could be eliminated by "simple" brainwashing and torture.

My GP and another doctor in the practice have both mentioned exercise to me a couple of times. Whilst I understand why, this makes me so angry, because clearly, they don't really know me (hardly their fault, given the limitations of the system they have to work within), they obviously don't know what it feels like to have fibromyalgia / ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome) (and I certainly wouldn't wish it on them), but advocating exercise without asking what I've already done and feel about this, appears to me to be because doctors are expected to take for granted that we're all lazy, ignorant lardarses.

Now, I'm not denying that there are a considerable number of lazy, ignorant lardarses in the UK, but it's definitely undue discrimination to tar us all with the same brush.

Apart from the fact that, back in the day, I used to regularly swim, run, weight-train, take jazz dance classes, disco dance, jig about on a stage, walk miles and miles ...

Believe me, I was the first to promote the theory that I need enough exercise to prevent me from ceasing up, but not so much as to cause me unbearable pain and fatigue that prevents me from even getting out of my bed. Common sense? You'd have thunk so, wouldn't you, but nobody's granted with having any of that nowadays.

Of course, the doctors have also "bought" the guidelines wholesale (or at least have to appear to do so, as I'm sure their careers depend on it) that were clearly written with little or no regard to science and patients' needs and everything to do with saving money on benefits and making even the limbless walk (and therefore work).

The fact of the matter is that in a suitable climate, I used to be able to get just enough of the right kind of exercise, frequently enough on MOST days, simply by taking the dog for a dozen short walks daily. And I did so willingly, knowingly and proactively.

The number of days when the weather wasn't good enough were sufficiently few enough not to impact. On good days, I took longer walks, slowly and deliberately, trying to keep up some level of fitness, whilst not overstepping my limits. Shopping trips did still cause me a lot of pain and fatigue, but I coped with them, by not making too many of them, resting first and crashing afterwards. It wasn't a perfect solution, but it meant that I could manage most of the things I needed to do, most of the time.

Stress, pollution, diet and more also contribute to a worsening of symptoms, but if the temperature in my surroundings dips below 20 degrees centigrade, then my muscles spasm and tighten making ANY movement excruciatingly painful. Imagine a feeling like they're tearing. Imagine trying to make a frozen chicken walk. If the temperature outside is below 15 degrees centigrade and / or there is any amount of humidity (does not have to be actual precipitation), then even a short walk causes unbearable pain.

The result, in the UK climate, is that for at least 10 months out of 12, it's too cold and / or too damp for me to go outside or get exercise at all without this causing pain that is totally disabling in nature. Then, even the short walk to the loo or the kitchen become monumental tasks from which I collapse, breathless, exhausted and in pain.

And I'm talking pain that is severe enough that:

I feel (and on occasions have been) sick (beyond simply nauseous).
Is so distracting that I cannot concentrate on anything; not even banal TV programs and my sight is blurred or eyes hurt too much to watch it anyway.
If I was asked, I doubt I could have strung my first and last names together, let alone a complete and literate sentence.
It feels like I've been beaten and bruised from head to toe, have half my bones broken, joints dislocated, am burning up in fever and am near delirium.
It hurts so much, I'm often in involuntary tears, but I dare not sob, because even that movement would be too painful.

This pain does not respond to over-the-counter painkillers and if I take anything else it will probably cause constipation so severe that ... repeat steps 1 - 5 above.

Are you getting the idea? The only thing I can do at these times is to lie flat (even sitting up is too much) in a darkened room, hoping to fall asleep. Or die.

We're told to pace ourselves so as to avoid such "boom or bust", "all or nothing" events that cause such severe flare-ups, but without transport or real help, there is no way to avoid them. Shopping trips (I mean for essential items such as food and medication), trips to support groups, even medical appointments create bloody hell. And during this past week alone, I've had over three days like that, because of 3 appointments.

Notwithstanding the fact that the cost of memberships to sports and leisure facilities or for exercise classes are prohibitive to someone on the sort of meager benefits we're required to subsist on; classes are often in the evenings when it is unsafe to go out even if we could do so, when there's no public transport running, even if it passed those places, which it doesn't. I can no longer drive. If I walked I'd be in the sort of excruciating pain I've described above and, from all that it should be obvious that I wouldn't be able to exercise on top of making the journey to the facility.

Swimming would be great, but when you've suffered with cystitis for 35 years, you know never to get into baths of water, especially not ones with bleach in them.

After at least a decade of reasonably successfully pacing and managing the fibromyalgia symptoms that I've been suffering for a minimum of 15 years, I reckon I have a pretty good handle on what I can and can't do by now and, more specifically, what happens when I attempt to push myself a little further (as in graded exercises). It does not increase tolerance making it possible to do more, as it would in a normal, healthy person. What it does do is to make matters worse in the short and long-term (possibly even permanently), by making flare-ups occur more frequently and for less.

And, apparently, 4,000 scientific and clinical papers agree with me.

Wednesday, April 8th, 2009

2009-04-08T23:25:00.000+01:00

Awoken at 7.30 by the sound of cat hacking up furballs on the carpet. The only good thing about that is, perhaps if he feels as crap as I do, maybe he'll just lie quietly or snuggle up. I do not have a single body part on me that does not hurt, badly.

Life has been cancelled until further notice. Even TV watching hurts.

Tuesday, April 7th, 2009

2009-04-07T17:15:00.000+01:00

World Health Day. Well, that was a bit ironic.

Woke up with terrible post-exertional aches and pains in my legs again (as I knew I would), chest pains, as well as a sore throat and the snuffly nose of someone about to come down with a cold or a nasty dose of flu. All of which made it very difficult to go out again, but, since I had a hospital appointment, I couldn't postpone it.

Took the early bus to catch the train, but because the sun was shining (shock), it was too warm in the bus and I had to get off again as fast as I could because I felt so nauseous and thought I was going to throw up.

Train journey was thankfully uneventful and I managed to catch the free bus to the city without having to wait as that was waiting outside the station.

Having had to come this far, I wanted to combine the trip with some shopping, so first I had something to eat, sat down for a rest and a coffee, but I'd still had enough after looking round only three smallish stores on one level of the shopping mall and could do no more.

My legs felt like lead, were incredibly painful and I was absolutely exhausted already, so I gave up and went to sit in a cafe. Rather than make matters worse still by trying to hop around on buses - I really can't cope with this on any level; bus journeys are painful with the jolting, so the less, the better; I don't know the area, so I didn't know what buses I could catch and last time, I had to catch 2 different buses, wait around in less than salubrious looking surroundings and the bus stops are not that near the hospital - I got a taxi from outside the mall to take me to the hospital and took his card so I could call them to take me back to the station later.

As there are never any buses in this area at times you want them, I'd have to take a taxi from the local station home too, which means these hospital trips also get rather expensive. The cost of just this one trip added up to more than a third of my weekly benefits. But the "charitable" neighbour car service is no cheaper, it just provides convenience of a car, door-to-door.

And the upshot of today's outpatient visit is that it looks like I may have yet another pain problem / invisible syndrome to add to the laundry list: one I'd never even heard of until a few days ago, Vulvodynia.

As it says here, "If you were unfamiliar with vulvodynia, you might make the rational assumption, based on the name that is was connected in some way to the vulva or the vagina, both would be right (guesses about Volvo cars would not, however, be correct)."

All we were trying to do was a smear test, but this proved impossible, despite 3 different people having 4 attempts (all with the utmost care and patience.)

I'll spare you the fine details (definitely too much information) beyond that the pain was truly excruciating and felt as though I was being ripped apart like a chicken having it's wishbone pulled. It was a burning, searing, stabbing, tearing pain ... The whole experience was really harrowing and traumatic actually, enough that I screamed the place down, involuntarily.

No, I'm really not exaggerating and, no these things didn't used to bother me in the slightest.

And no, I haven't been using raspberry yogurt.

Dr. John Willems, head, division of obstetrics and gynaecology, Scripps Clinic believes that vulvodynia is a subset of fibromyalgia. (And, I'll bet he's right too.)

It also says, "Vulvodynia is also frequently found in patients suffering from interstitial cystitis." The symptoms of which I've had for 35 years.

It's also been more than 20 years since I found I couldn't use tampons; at least 10 years since I chose to have any sexual relations and had been around a dozen since I'd seen a gynaecologist, so this has probably been developing silently along all my other constantly worsening pain. Just never connected it all before.

So, it's been explained, I need to discuss this with my GP, so that I can be admitted to hospital and be fully sedated to get this done. Hmm, outpatient visits are one thing, but this is a bit beyond my limit for entering any of the UK's third-world hospitals, voluntarily.

Monday, April 6th, 2009

2009-04-06T03:50:00.000+01:00

Such a pleasant morning, considering, although I still felt dreadful, as I had done for days, nah, weeks, years ... So, I dragged myself out to join the local writers' group. It's something I wanted to go to and, I enjoyed being able to interact with human beings for a change, but the challenges of getting there - too early for my stiff body and a much longer walk than I can comfortably manage even on the best days - really showed up in my complete inability to, well, write anything even nearing coherent!

Probably the first "purely social" activity I'd engaged in (unless someone took me), for years and, I know the importance of not becoming a hermit, but it really does not help that, because there are so few buses, one is forced always to go to things way too early and / or hang about for hours afterwards. To a healthy person, this might present an opportunity to do a bit of shopping or something, but not to me any more.

As it was, from a 2 hour activity that began at 10:30 a.m., the first bus home would be after 2 p.m. and the next not until just before 5 p.m. That's really too long and, I had no choice but to pay for a taxi, because I could no longer walk, I was in terrible pain, my legs were like lead and I could hardly put one foot in front of the other.

When I got home, I just crashed, exhausted and fell asleep, involuntarily.

Sunday, April 5th, 2009

2009-04-05T23:22:00.000+01:00

Woke up stiff with pain in my neck. When I attempted to move my head to alleiviate this stiffness, my joints began clicking and banging painfully and there was a sound at the back of my neck I can only describe as grinding: as if my bones are crumbling.

The pain and stiffness hasn't gone all day and is now spreading down my back and it probably won't go unless I take a few days off from doing anything at the computer.

My legs continue to be painful everywhere and I found it especially difficult to stand for any length of time (not even minutes) to be able to cook dinner and, the sore spot on my right foot is still preventing me from getting into a comfortable positon.

Food Crisis

2009-04-04T21:00:00.001+01:00

Let me show you a real, tangible way in which poverty, meanness and / or divorce from reality causes very real difficulty on a day-to-day basis. In this BBC report, warning of a food price hike crisis, "a single mother of two young children, said the family was struggling on a food budget of £3 per head per day." She's lucky!

It was a major coop when I was finally able to have our groceries delivered, but I can't pay for them, partly because I don't have the money and because (as an unknown alien from abroad), the bank will not give me a card to do so.

So, it has to be paid for on mother's credit card. As I do the cooking, I do the menu, make the list and place the order monthly and, obviously, I tell her how much it's going to be. Usually, I get it to around the £70 - £80 mark.

Once it reached £100 and there was a frown and sharp intake of breath, because she considered that to be too much. I know that's a psychological barrier, but if the bill was to go over that, there would be a comment and an expectation that the next month be lower to compensate. If it was to go over consistently, I would be blamed, the delivery would be blamed. She could refuse to allow the order to be placed and we'd be back to her choice of cheap packet crap that would make my fibromyalgia flare up even worse and there is absolutely no way that I'm going to risk that happening.

Bear in mind too that this amount includes, not just food, but household things, like bog rolls, laundry soap, cleaning materials, etc.

Our monthly food bill for 2 people subtracting those things and adding the few fresh items bought each week, will come to an average of around £100.

This is not even £2 per person, per day. By the time you subtract the very few quid a month for cat food, it's probably going to be no more that £1.50, per person, per day - only half the amount the single mother struggles on. How much do I struggle then?

Previously, I was spending this much and more, to feed one person.

I'm also certain mother was spending almost this much for one person here in the UK too. Then mother says that £100 is about what they were spending when my father was alive. He's been dead almost a decade. She doesn't consider that it should now be more? She knows prices rise weekly, but will make no allowance for that.

In truth, by cooking from scratch, which most people appear to have become immune to, it's actually possible to not starve to death on so little money, but like they say, it's getting harder and you certainly don't get much fresh fruit and veg on it.