CHAOSTOCOSMOS

Sunday, 31 July 2011

In Pursuit of Pleasure

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These days I get very few opportunities for pleasure of any kind. In fact, I’d had only one outing so far this year that was for anything other than a medical related appointment and that was to be in the Bourne Free - Bournemouth Pride Parade earlier this month. That one hour in the parade, mostly seated on a lorry, *cost* me a lot of pain & several days recuperation, but it’s a price I pay willingly to do my bit in support of gay and human rights.

No doubt, to the DWP and anyone else who thinks all us benefit claimants are scroungers, that’s already one pleasurable outing too many and one more than I am deemed to deserve, but to hell with them: it’s impossible to maintain the will to live without some pleasure.

So, foolishly, I thought I could eek another hour or so of fun out of life on Friday ... This turned out to be a wholly different story, however.

Advertised for Friday, Saturday and Sunday in Christchurch, Dorset, was a “Traditional Tunisian Souk Market.” Now, I will admit that my first mistake was to expect it to be anything like a “Traditional Tunisian Souk Market”, but I think half a dozen ordinary market stalls, one of which was selling hot dogsnot a traditional Tunisian dish that I know of – failed to come even close.

There was a large quantity of tourist quality ceramics – maybe I just saw too many of these already in Tenerife – a huge number of which were ashtrays - I mean, who smokes and uses ashtrays today? – and not much else.

Admittedly, I went only to indulge myself in a piece of Baklava and I probably shouldn’t complain, because I did (and Kataifi and Loukoumi) but the prices were so high, it might have been cheaper to go to Greece to buy some!

(Yes, I know, so much for the diet, but a) it’s not like I’m losing that much weight anyway and b) it’s only once every few years I see this stuff.)

For some reason, I keep forgetting that Britain doesn’t do enjoyment, only blatant commercialism and profit-making, related to which is the fact that, service came without a smile, but with lots of desperately exasperated suggestions for what else I could buy, making me feel pressured and as if I was seen as a mere target to be taken advantage of, which all helps take the edge off the fun and makes one wonder if it was at all worth the journey …

The bus stop is too far away for me to be able to walk to in comfort, hence I don’t usually go out any more often than is strictly necessary, but I left myself time to be able to walk slowly. Even so, as the weather was excessively humid – with solid low lying dark grey cloud – by the time I got there, I was sweating so much that it was stinging my eyes, my hair was dripping wet, sweat was running down my back and my clothes were soaked and sticking to me.

Already uncomfortable enough, not to mention the exhaustion and the pain.

P210211_13.20The bus stop has only a narrow perch rather than a seat, which is totally unsuitable for anyone over the height of 4 foot 6 inches, the age of 35 or in any way impaired. Naturally, the buses always run late, so one is left perching longer than planned too.

My arse – despite its ample padding - still hurts from sitting on that thing!

When eventually, the bus does arrive, it goes via every back road, stopping and starting and jolting my back and neck to the point of tears.

Other than the disappointing market, I ventured into Marks & Spencers for a £1.00 sushi snack for my lunch and looked at a couple of nearby charity shops. I couldn’t have walked any further, so, with nothing else to see, I checked the time of the next bus home. It was in 15 minutes: just time to eat my sushi.

Huh! It would have been time enough to have eaten a 3-course meal.

As ever, the bus was about 25 minutes late – unless it was the next one 5 minutes early, but I really, really doubt it! I’d had a seat on the nearby benches while I was eating my lunch, but as the scheduled bus time got closer, the queue became longer and longer and I could no longer avoid getting in it. Except I can’t stand for more than 30 seconds without extreme pain in my legs and, nine times out of 10, feeling lightheaded or faint. And I did, so I went and perched my bum on the equally inadequate bar of a seat in the bus shelter.

When the bus finally came, it was already fairly full and now the world and his dog wanted to get on it too, all at once, it seemed. The system for queuing for buses, in banks, whatever, in Tenerife means that you remember who is in front of you and whoever is behind you remembers your place. Thus, if you step out of line to sit down – because you had to, because you’re ill, old, pregnant or whatever – you still get on or served in order. Of course that doesn’t happen in the UK! Step out of line and you’re now deemed to be at the very end. People push and shove like they’re about to get on the Japanese railway.

That, again, meant standing for far longer than I can cope with, being buffeted painfully in the crowd and then, by the time I got on, there was only one seat left, in the middle of those folding seats along the side of the bus that are uncomfortable and without arm or back rests. As the bus stopped and started, my weight was thrown onto my painful hip, my back felt like it was breaking and, besides, I was becoming too tired to hold myself up.

It was so painful, I was VERY, VERY close to crying out.

Once I got back, I still had that long walk back from the bus stop. By this time I was in so much pain and so exhausted, I could hardly walk at all. It was so slowly and painfully that I was having trouble staying upright and I was staggering and weaving all over the place like a drunk.

I had to lie down when I got in and wasn’t capable of doing anything else on Friday. The pain in my hip, knees, legs and feet increased to the point where I wondered if cutting them off might be the only way to stop the pain. A vein on the front of my shin was sticking up like a purple beacon. And, curiously, the skin on the big toe joint and toes of my right foot went numb.

Eventually, I got to sleep on Friday night, but yesterday morning, Saturday, the pain in my right hip and down my right leg was way off the scale; the skin on my toes was still numb; my neck and back hurt even more and I’d developed a characteristic sore throat, feverish headache and overall flu-like symptoms, as well as being utterly exhausted, so I took a powder (Beechams) and went to sleep for the afternoon. And still slept right through the night.

This morning, Sunday, instead of feeling any better, I felt much worse.

My prescription meds (Celebrex) just aren’t having any effect on reducing the level of pain in my neck, back, hip, knees, legs and feet … all still being in agony, as well as my hands and wrists being swollen, painful and too weak even to manage to lift a cup for breakfast. Then I still have all the flu-like symptoms, now with the added *bonus* of a cough that will not stop.

At the end of the day, I have to conclude that this is far too much pain for so little pleasure: that the disadvantages so outweigh the benefits as to make it not worth it and, have to accept that I am no longer able to cope with such outings, unless either a) I have to or b) the potential pleasure is huge.

And, sadly, in the UK, b) is less likely than finding rocking horse poo.

Links of the day 07/31/2011

  • "Feilden seemed unaware that claiming vilification and abuse by ME patients is a regular pattern of behaviour exhibited by Wessely over the years, usually when yet more published evidence further disproves his belief that ME is perpetuated by patients wrongly attributing their symptoms to a physical disease. "

    tags: me_cfs cosmos

Posted from Diigo. The rest of my favorite links are here.

Saturday, 30 July 2011

Links of the day 07/30/2011

Posted from Diigo. The rest of my favorite links are here.

Friday, 29 July 2011

Links of the day 07/29/2011

  • "What makes me boil with rage is reading the Express and and it’s ilk swallowing the Government lie that only one in 14 people claiming sickness benefits deserve to do so. 40% of claimants who appeal win. Those who have legal advice and representation are even more successful. Even the man who designed the WCA says it’s not fit for purpose. But no, journalists in national newspapers are prepared to peddle unthinkingly the old lie; if you’re too sick to work you must be lazy."

    tags: uk benefits cosmos

Posted from Diigo. The rest of my favorite links are here.

Thursday, 28 July 2011

Links of the day 07/28/2011

Posted from Diigo. The rest of my favorite links are here.

Wednesday, 27 July 2011

Greenwashing an Air Festival

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If there’s one thing that really, really, really makes me mad, it’s the deliberately misleading and deceptive practice of greenwashing.

And recently I came across what, in my ‘umble opinion, has to be one of the most pathetic attempts at such PR spin ever to be seen in the wild.

Bournemouth Air Festival posted a press release in May, entitled:

“Bournemouth Air Festival Goes Green”

… with the sub-title plea for visitors to “Be a Responsible Festival Go-er”; encouraging taking home or recycling their rubbish, using alternative transport, etc., with the aim of making this a ‘zero waste to landfill’ event.”

OK, those are not bad aims, but think about it for a moment: while punters are worrying their little heads about how and where to dispose of their sarnie wrappers, hopefully it won’t be crossing their minds how many millions of tons of aviation fuel are being burned and polluting the air around them.

Do they think people are stupid? It looks to me like they’re counting on it!

If it wasn’t real, actually, this would be hilariously funny. And, I don’t think military aircraft are equipped to run on re-cycled cooking oil just yet!

Pammy gets Personally political

In other news, I've whinged about the state of this dump (the UK) for long enough (and it's still my intention to re-abandon the sinking ship Britannia as soon as if and when I am able), but I thought it was time I actually did something about it - from the inside.

At the last local elections I went out with the intention of voting for the Green Party, however, the list of candidates on the ballot paper included half a dozen Conservatives (hiss, boo) and a LibDem, none of whom I wished to encourage.

Apparently, we didn't have a Green Party candidate at council level in this area, ‘coz nobody had put themselves forward - something I am in the process of rectifying. Well, at least, I've spoken to the local Green Party and joined them and it is my intention to put myself forward for the next local elections.

Of course that’s years off and there’s the minor issue of how does one combine things like canvassing with being mostly bed-bound, but hell, this is 2011 – much of that can be done more effectively on Facebook.

Although I pride myself on being very different to the usual folk around here, it did occur to me that if I felt disenfranchised and lacking the choice I would like to make, then there must be other people who feel that way too.

Encouragingly, my initial local enquiries seem to suggest that this is so.

NB: It goes without saying though – but I’ll say it anyway for the hard of thinking – that my various ramblings and opinions herein are my personal opinions and are not in any way representative of the party.

Links of the day 07/27/2011

Posted from Diigo. The rest of my favorite links are here.

Discovering what you value

imageUsing the The Cultural Dynamics Values Modes Questionnaire, one can discover which of 3 groups; settlers, prospectors or pioneers, one falls into.

These groups are further divided into “The 12 Values Modes - the VMs (pronounced "vims") – [which] form a psychographic classification system based on individuals' Values sets. By the term "Values", we mean that nest of beliefs and motivations - largely subconscious - that underpin our attitudes to everything we encounter.”

My results to the questionnaire identify me as one of The Transcenders:

The leading edge. The Transcenders are the most self aware and contented of the Pioneers, but also the ones most likely to push their perceptual boundaries, in an attempt to gain greater harmony with their own value set and gain connection with others and the environment around them.

They are the “scouts” for the rest of the Pioneers, pushing farther, faster, yet with a “lightness” that is not often felt by the other Pioneers.

For the majority of the time, life is fun. They are intrigued by the unknown, and have a need for openness in their lives. Forgiving of themselves, they are the most likely to be forgiving of others.

I like that, although contented, at the moment, I’m certainly not.

What sort of person are you and what motivates your decision-making?

Via: Adult Care Blog

You gotta love ‘em

imageSo, I have this little “Love” cushion (‘coz it matches another one with cats appliquéd on it). It’s quite small, measuring only 22 cm x 17 cm (just over 8 inches x 6 inches in old money). Yes, I got them for the cats’ beds really, but they’re great as neck support cushions.

Anyway for the last few nights, Sr. Balu has taken to sleeping lengthways next to me on the bed. (While his sister curls up on the other side of me.)

Just joking, as he jumped up onto the bed before preparing to snuggle down last night, I placed this little kitty-sized cushion at the top of the bed, patted it and said to him (as you do), “There you are, there’s your pillow.”

Not thinking for one moment that he actually would, first he lay on his stomach with his chin and paw on it, then he rolled over on his side and lay lengthways, with his head on the pillow like a “normal person”. Winking smile

Tuesday, 26 July 2011

Weight Progress and Updated Menu July 2011

funny-pictures-rabbit-has-lettuce

It’s been a while since I mentioned my weight problemsa whole year in fact, since I mentioned that the weight loss fairy had momentarily treated me kindly, but if you were thinking that “no news is good news”, though, you’d be very wrong.

What has happened since then – despite staying on that already purgatory 1,500 calorie per day regime? My weight had risen by a whole stone (14 lbs / 6.3 kilos) to a disgustingly obese 13 stone (182 lbs / 83 kilos).

If ever there was something to define soul destroying, this is it. Well, that and finding that even fitting into size 20 jeans was an impossible fantasy and feeling somewhat akin to a waddling duck or beached whale.

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Of course, the causes of this problem are my inability to exercise because of myalgic encephalomyelitis, which is becoming worse all the time, despite pacing, plus the various weight increasing prescription drugs I have to take to be able to cope at any level (and it’s not much of one) with chronic pain and veritable smorgasbord of conditions I have.

Probably the biggest cause of all is my illness itself (OK, partly menopause and stopping smoking in 2007), because, as can be seen from the graph, the last time I was hovering anywhere near the ideal weight for my height (140 lbs) was in 1997 and it was in the period 1995 – 1997 that I was undergoing barrages of tests for what was eventually diagnosed (in 2008) as fibromyalgia.

These days, I’m taking four prescription drugs; Venlafaxine, Pregabalin (Lyrica), Celecoxib (Celebrex) and Lansoprazole. Of those, the Pregabalin (Lyrica) has the biggest reputation for being responsible for weight gain, so I think this needs review to see if the benefits outweigh the disadvantages.

Probably not: Pregabalin, despite being approved for the treatment of fibromyalgia does nothing at all for my pain – and added weight only makes the pain, especially that in my hips and legs, worse. It has helped me sleep though. (I’ve also been using melatonin, which works, but is now banned in Europe.) This is a conundrum though, because lack of sleep causes weight gain too.

Not losing weight? Gaining? Surprising reasons for weight gain.

Past medications that also almost certainly added to my weight gain are Amitriptyline (Elavil), Gabapentin and various antidepressants.

Not all fat people are chronic lardarses

Contrary to popular belief – particularly what seems to be the automatic assumption by medical staff: that all fat people are serious crap eaters - I almost never eat junk food. When I say “almost never”, I actually mean once every 10 – 15 years. The nearest McDonalds was 1 1/2 hours by bus in Tenerife, so that hardly qualified as *fast food* either. (No, I never did get the urge to bother!) I don’t eat snacks, I don’t buy crisps, biscuits or cakes. I never drink alcohol nor fizzy drinks because of serious intolerances. If I do allow myself a small treat, it's only when I’m out and only about once a month.

And I’ve been preaching for years against processed foods, especially those that claim to be low-fat, on the simple premise that when they artificially scrape the fat out of something, what disgusting, inedible crap do they put back in?

Updated Menu July 2011

Something has to give though, so I amended my diet again this month:

imageBreakfast: Approx. 50 grams of oaty roughage cereal, with a splash of soya milk, a desert spoon of vegan hemp protein powder, a sprinkle of psyllium husk powder and a spoonful of 0% fat Greek yogurt to make it taste acceptable. And a double espresso coffee.

Lunch: A small portion of low-fat protein (Quorn burger, pulses, grilled fish, steamed fish, etc.) served with roast or steamed vegetables and / or green salad. (NO potatoes, rice or pasta.)

Dinner: A bowl of green salad leaves dressed with a small splash of olive oil, sea salt, a teaspoon of linseeds and a small wholegrain roll (home-made).

Drinks: Each day I drink 2 litres of filtered water to which has been added a tablespoon of unsweetened cranberry juice, 2 tablespoons of lemon juice and a dandelion root tea bag. (Touted to banish bloating, and it does help.)

Yes, that really is all I eat! Like a horse with his nose in oats for breakfast and like a bloody rabbit in carrots and lettuce for the rest of the day!

Of course I’m hungry! Adhering strictly to the 2 litres of fluid a day does help you to feel full, although I seem to be almost constantly pee’ing! Smile

The aim was a low-carb, low-fat, high-fibre, high-protein, low-calorie, low-GI (glycemic index), cholesterol-busting mix. My analysis suggests that it fulfils those criteria. The total comes to around 900 calories daily (it was 1100 as I was eating double the suggested portion of cereal), which ought to facilitate rapid weight loss (women should not consume less than 1,200 calories each day).

Is it helping me lose weight? Is it fuck?

In almost the entire month, so far, I’ve lost a whole 4 lbs. Well, I lost 4, regained 2 of them, then lost them again. This is hardly rapid. To be honest, it’s hardly any progress at all and I have no idea what to try next.

There is another reason for this minute dissection: I print it all out and give a copy to my GP, so she’s left in no doubt whatsoever when it comes to nagging advising me to lose weight (for which she’ll get paid), denying me access to surgery (not that I’d want any in the UK’s workhouses) or when this Govt. will, no doubt, decide to fine overweight welfare claimants for being fat, US style.

Links of the day 07/26/2011

Posted from Diigo. The rest of my favorite links are here.

Monday, 25 July 2011

Links of the day 07/25/2011

  • "By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.

    Please listen. Please think again."

    tags: uk benefits cosmos

  • From the upcoming article "Myalgic Encephalomyelitis: International Consensus Criteria" Journal of Internal Medicine 2011

    (I have all of the symptoms listed, in all categories, with a severe symptom severity.)

    tags: me_cfs cosmos

  • "Even the Tories admit that the recession, which their cuts policies are deepening, will raise the threat of crime. In particular crime is increased by the cuts in welfare benefits – which is what the Tories are concentrating on."

    tags: uk cosmos benefits

  • "This is why we are so angry about the PACE trial, almost £5 million being spent on, well, nothing. (PACE used the Oxford criteria, devised by UK psychiatrists, which actually exclude neurological disorders, so that people who are a bit fed up and deconditioned can actually be diagnosed with ME. Yes, you couldn't make it up!) "

    tags: me_cfs cosmos

  • "No treatment works for everyone with chronic fatigue syndrome. Each person needs a customized treatment regimen, and the best regimens usually combine several treatments.

    Remember that sentence as you pore through online claims of miracle cures (I'll save you time there - they're bogus) and wonder drugs/supplements with too-good-to-be-true promises. If it worked for everyone, websites like this one wouldn't exist - everyone would be feeling great and out doing something a lot more fun than researching their illness!"

    tags: me_cfs cosmos

  • "I imagine we all know which route they will take, but wouldn't it be nice, just for once, if they stopped and listened now. Before too many people got hurt? "

    tags: uk benefits cosmos

Posted from Diigo. The rest of my favorite links are here.

Sunday, 24 July 2011

Links of the day 07/24/2011

  • "A drip-feed of statistics about claimants who have been denied benefits by the Department for Work and Pensions because they are deemed fit to work threatens the safety and quality of life of its members, says an alliance of 50 charities. The government is feeding a negative attitude towards people with disabilities, which, the charities warn, will ultimately end in violence."

    tags: uk benefits cosmos

Posted from Diigo. The rest of my favorite links are here.

Saturday, 23 July 2011

Links of the day 07/23/2011

Posted from Diigo. The rest of my favorite links are here.

Wednesday, 20 July 2011

Links of the day 07/20/2011

Posted from Diigo. The rest of my favorite links are here.

Tuesday, 19 July 2011

Links of the day 07/19/2011

Posted from Diigo. The rest of my favorite links are here.

Monday, 18 July 2011

Prince Charming

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So, you must be familiar with the hoary old tale where the handsome prince wakes Sleeping Beauty and they all lived happily ever after, but did you know that the prince was, in fact, a cat?

Yes, of course you did!

To this morning: at 8 a.m. on the dot – this is a prince with a digital watch, or at least an in-built one that knows exactly when feeding time is – the handsome young prince probably didn’t tremble upon seeing the princess's beauty (cough), but he did trample all over me before stretching out across my chest. A paw then reached up to softly stroke the side of my face, then he leaned and kissed me on the lips!

Guaranteed to mushify even the hardest of hearts.

And get me up for his breakfast! Smile

Links of the day 07/18/2011

Posted from Diigo. The rest of my favorite links are here.

Saturday, 16 July 2011

Links of the day 07/16/2011

Posted from Diigo. The rest of my favorite links are here.

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