CHAOSTOCOSMOS

Saturday, 19 December 2009

Fibro Grinch Guide to Christmas

imageOK folks, what or whom first appeared in 1957, could well be described as "a bitter, cave-dwelling, catlike creature"; dunno about a heart "two sizes too small," but it doesn't seem to pump all that well; used to live in the hills around the snowy Mount Crumpit Teide and previously had for a companion, a very faithful dog?

On the other hand, I only feel green! Sick

So, while everyone is stressing out, running around to get last minute Christmas things organized, I thought I'd write down my "secrets" for surviving the annual seasonal onslaught, short of preventing Christmas from coming.

1. Ban Christmas Cards 

This started when I first went to live in Tenerife in 1992. Christmas cards were not a Spanish tradition, except for the long thin, wordless Christmas Money wallets, only suitable if you were giving a gift of cash. Couldn't buy ordinary Christmas cards then, so I didn't bother. 

Later on, I couldn't afford the postage and then writing them, going out to get stamps, etc., became too much of a exertion, so I didn't bother to get back into the habit again either.

Now, I've taken to calling Christmas cards "murdered trees," which is a point I'm labouring, partly to cover my own lack of enthusiasm for the whole thing. Actually, it does seem a bit pointless (I'm not sure whether that's a result of my atheism or depression) and dreadfully un-green and, given that most of the people I wish to send seasonal greetings to are online anyway.

2. Ban Christmas Shopping

Bah bloody humbug. No, seriously, it helps having a family of only one and two cats to buy for, but while I can, just, stagger to the shops, I simply can't stand long enough to wait in queues to pay for things, so it's a pointless exercise at this time of year that I have managed to avoid totally beyond buying a couple of "stocking fillers" in the pet shop and one pack of wrapping paper.

Our local shops, it has to be said, don't offer a fat lot of choice in any case, so all my gifts were ordered through Ebay, except some I bought for myself from Amazon! Big Grin

Apart from not being able to walk far or stand in queues, supermarkets are impossible, because I now need my reading glasses to see the products on the shelves, let alone their labels, but I can't walk around with them on. All the stopping and starting just results in dizziness and terrible nausea. I also can't carry more than a small backpack's worth of shopping (only on my back and not in my hands), so except for just a handful of items I picked up myself, all the Christmas groceries were either delivered by Tesco, or I sent my mother out for them with a detailed list.

3. Ban Christmas Cooking

All cooking is a pain in the arse these days. My wrists won't let me chop things (both through pain and lack of power), my legs / dizzy spells won't let me stand to prepare / stir / supervise anything and my foggy head can't cope with recipes containing any more than 3-4 ingredients.

Thus, we're having (there's only two of us) a breast of "non-abused" turkey from the local butcher, wrapped around ready-made stuffing, with ready-prepared parsnips and ready-peeled sprouts, before a bought pudding (all of these had their ingredients carefully scrutinized to mitigate my various food intolerances.) Mother will be conscripted to peel real spuds for roasting.

My job will thus be reduced to throwing things in the steamer or oven.

4. Ban Christmas Treats

Well, except for the one bottle of Spanish Cava which is the least likely alcohol to cause me any trouble. However, sweet treats have been restricted to healthy fruits like Satsumas, dates and nuts, plus some organic mincemeat and a ginger cake that both promise unrefined sugar.

And sticking to this, even at Christmas, I reckon entitles me to a Sainthood! Blushing

5. Ban Christmas Decorations

Actually, I "splashed out" a whole pound on a spice smelling candle for "seasonal ambiance," which is 100% more than I did last year. There's a bloke round the corner who has done a whole "Clark Griswold job" on his house with lights (remember National Lampoon's Christmas Vacation), albeit for charity, so I reckon that's enough drain on the National Grid for one area.

Look, if I don't feel the least Christmassy, I'm sure some tacky crap isn't going to change it.

Christmases past were very special. I have only hope for better Christmases future. Of course, a lot of this is "downsizing" Christmas celebrations to what I can manage to deal with, with my fibromyalgia and ME, but do you think Scrooge / The Grinch would be proud of me? Sad

Relieves fatigue

image

If only it were that simple?

Borrowed from pansypoo

Friday, 18 December 2009

Fibromyalgia symptoms

500px-Fibromyalgia_symptoms.svg

Interesting diagram, available under the GNU Free Documentation License.

The list of symptoms is, of course, merely the tip of the iceberg as far as the unpredictable fibromyalgia is concerned. Nevertheless, this may provide a useful, visual starting point.

Thursday, 17 December 2009

Why does IBS have to be so fickle?

image IBS, with which I was diagnosed in 1980 and again in 1986, often comes as part of the whole fibromyalgia / me/cfs package and, these buggers are all as unpredictable, unexplainable and illogical as each other.

Take this morning: I knew I wanted to go, but made several trips under false pretences before I was able to achieve any success.

Or, as my old granny used to say:

"Here I sit, broken hearted, paid my penny and only farted."

Meanwhile, a painful tightness was gripping me across the middle of my shoulder blades (funny place for bowel fullness to manifest - I suspect it's more a symptom of toxic overload from, er, not having unloaded my toxins), the customary pain in the small of my back had reached screaming pitch, a headache was building and, overall I felt dreadfully nauseous and unwell.

I hadn't been yesterday either (which is nothing unusual), so I'd added prunes and kiwi fruit for my pudding at lunch - on top of my religiously fibre-filled wholefood menu and psyllium husk supplement regime which is what it takes to blast my sluggish digestive system into action.

And yet, when I did go finally today, it was akin to a Versuvial eruption that I thought would never end and made me feel weak and unwell in the process. Now I have a stomach ache!

Why can't I get back to the nice mostly regular routine I had in Tenerife where I ate a fairly normal, though generally vegetarian diet, took no special supplements, yet went, regular as clockwork, with normal emissions, once a day, usually just after the 2nd cup of coffee?

Saturday, 12 December 2009

How to Survive the Holidays With Fibromyalgia

image(Personally, I have my own way of dealing with Christmas, which I may go into later, however, I can echo many of Cynthia Jones' words in this article about the food we eat adding to, if not actually causing, our pain. We must be allowed some enjoyment, I feel, but it would certainly make things easier to avoid food additives as well as processed sugar, as much as possible.)

I have had Fibromyalgia and Chronic pain for 25 years. In 2007 I finally discovered the cause of my Fibromyalgia flare-ups. Unfortunately during the years between 2001-2007 I was very sick everyday with tremendous pain.

What's the old saying? "It's darkest right before the dawn."

Back then every single day when I opened my eyes my body would immediately go into a panic. I knew the infamous muscle fatigue was on the way as soon as my cells finished waking up. The best way I know how to describe the pain is that it's my body's fight or flight survival panic. My body seemed to be screaming internally for survival.

There were also many days when the body aches were so intense I could barely move. On those days depression was in control and I wanted to go off by myself and die, similar to an old dog.

Does this sound familiar to you?

Today as I recall those experiences the worst memories were during the holiday season. I love comfort food and always splurge during the holidays. I eat everything in sight, especially on Thanksgiving Day. Turkey and stuffing are my all-time favorites.

Unfortunately, the next morning while my family would be downstairs having breakfast, laughing and loving life, I would crawl to the bathroom from my bed immersed in pain.

Looking back, it makes perfect sense. I had no idea at the time that food was the cause of my pain and when did I eat the most? During the holidays.

Read every label on your meats carefully. If you see the words "basted, extra tender or juicy" written on your holiday turkey label it may contain a 15% toxic solution. The solution may include broth, sodium phosphates, citric acid and flavorings. These ingredients may contain MSG or excitotoxins that cause musculoskeletal pain. Always ask your butcher to order your meat without injected solutions.

When making your stuffing or casseroles use Swanson's broth, it's MSG free. Kitchen Basics' stock is also free from ingredients that cause common food allergies. They do not autolyze, hydrolyze, add or produce MSG, which causes migraines and muscle pain.

I hope you and your family have a wonderful and painfree holiday season. Please click here to order a free report of the 65 cleverly concealed names which cause Fibromyalgia and Chronic Pain.

Hello my name is Cynthia Jones and I've had chronic pain for 25 years. I was diagnosed with Fibromyalgia 10 years ago. I refused to take prescription drugs for the rest of my life! After exhaustive investigation and research, I finally discovered 100% of the excitotoxins in our food supply. I've found the cause of my pain - and with the elimination of these excitotoxins - my recovery. It has become my life's purpose to help heal those in chronic pain.

Friday, 11 December 2009

Weight Problems

Weight ProblemsIt should be considered a success that I've managed to lose 2 whole kilos (about 4.4 lbs) in the last few weeks. Unfortunately, if you work out the rate of this loss - a staggering 0.012048193 lbs per day over the 166 days between when my weight was first measured in June and the other day when I registered the loss, you can further extrapolate the data to discover that, at best, I would be a smidgen short of my 60th birthday before I would see the upper limits of my ideal weight range (141 lbs.)

Later - right now it's too depressing to think about, let alone type out - I'll describe the diet (starvation rations, more like) that it has taken to provoke this massive (cough) loss.

Worse yet, to get back to a mean of that ideal (120 lbs) and the weight I used to be for most of my adult life, at this rate, will take me until I'm just a whisker off my retirement age of 65.

By then another 12 advancing years, let alone the fibromyalgia and ME, will likely have added more pounds than I reckon I'll ever be able to lose, making it very hard to remain motivated.

Weight Problems Art Print

Getting help is nigh on impossible

image Just to give you an idea of how hard it is to get any help around here ...

Earlier on in the year, I started seeing a councillor, which was arranged at and via the local Citizens Advice Bureau. The sessions were useful, so I was disappointed when they ended, supposedly because the councillor had an accident and broke his leg whilst on holiday.

The Citizens Advice Bureau told me to phone them back in a few weeks to see if there was any news. I left it for around 6-8 weeks and did so. At that time, they told me that the guy's leg might not actually be broken, but that they still didn't have any news, could I phone back in another couple of weeks ... I waited again, phoned back again and was told by the person on the phone that time that they thought it was the councillor's wife who had had the accident. Fishy? They still couldn't give me any news though. They suggested - guess what? - yup, ringing back at a later date!

So I left it for a quite a while, figuring that if the first guy had merely decided not to continue donating his time (which is his prerogative), as he did have other "clients" he saw at the CAB office, maybe by now "demand" might have generated a similar new arrangement.

And so today, I phoned the CAB again in hopes of asking this question and one other.

Well, I didn't get round to asking my other question. When I explained that I had seen the councillor through them earlier in the year, but that it had ended due to some sort of accident and that I'd been told to phone again ... I was snottily told that they could not discuss this issue over the phone, I would have to go to the office in person. It isn't like I want to discuss the nature of my need for counselling, or the actual session over the phone, just get an appointment.

Going to their offices means another trip into town - the sort that causes me to crash severely and spend the next week in bed. I'd - still reluctantly - consider doing that to gain the benefits from the actual session, but I draw the line at such an off-chance visit. I only want to know if they have someone who offers a service I was already getting and, if so, to make a new appointment. Surely, this can be done - as they told me to - over the phone. You can guarantee they will have a huge queue - bearing in mind that I can't stand and even sitting causes me a lot of pain.

Why do I need to go to the CAB for this anyway? This service was free through the CAB. The NHS, it seems, can't or won't offer it to me - I've asked my GP for this kind of help twice, but getting a prescription for fluoxetine is as much as I've got - and I can't afford to pay to go privately.

I explained that going to the office was difficult, well, actually, I said that it would cause me great difficulty because I am quite severely disabled. Their only suggestion was that I go in the afternoon, as they are less busy then. That hardly helps. It makes this a completely impossible proposition.

Tuesday, 8 December 2009

Concerts are a bit like buses

image

For ages now, I've been lamenting that this area is the land that time forgot and that absolutely nothing ever happens hereabouts. Well, I still think that's true, but not too far away in *sunny* Bournemouth, things are not all as I imagined (i.e. has-beens in panto by the pier.)

Only yesterday (too bloody late, of course), I discovered that  UB40, along with Maxi Priest and Eddy Grant, are playing the Bournemouth International Centre tonight, Dec 8th.

On Saturday 12th, at the same venue, is Chaka Khan. (Who I went to see, with Rufus, at the Mid-Summer Music Festival, at Wembley Stadium, London, way back on June 21st, 1975.)

Would I like to go to these? Well, just look at the top artists played on my Last.fm profile!

(Oh, I'll give Status Quo a miss on the 21st. I saw them at Bracknell Leisure Centre in 1971 ish (don't ask) and, I'm sure they'll only be playing the same 3 chords again! Sarcastic 

Of course, there's the *little* problem of my health that makes the whole thing pretty academic and hypothetical; the lack of public transport that makes it impossible, then there's the cost.

If I thought the prices of bus fares had risen to an extortionate high in the UK (and they've risen again since then), WTF happened to the price of gig tickets in my absence?

For the Chaka concert, it lists "Tickets from £79.20" (though it looks like the only ones left are £155). These are cheap compared to some I've seen and, no doubt, there are people who can afford them, but it sure as hell ain't the likes of me on less than £90 a week benefits!

(All those who complain because they think we *benefit scroungers* are happily coining our fortunes at their expense should think again. One, it is more than cruelly depressing to be both ill & locked in poverty where even "everyday luxuries" (to most) are so totally and permanently beyond our reach. Secondly, even if those mean-spirited moaners had to pay one of us personally, we'd still cost them much less each week than what they spend on their pure entertainment.

These prices make the last concert I went to back in Tenerife, the Orishas, seem even more quaintly inexpensive at a mere 5 euros (about 4 quid.) - yes, in 2008, not 1908 too!

(Well, I didn't pay anything, 'coz my friends Jack and Andy did. Thanks again!)

In Manchester, Whitney Houston tickets are listed as high as £550 currently. Wonder how much tickets will be if she plays Tenerife next April? Not as cheap as £4, I'm sure, but not as much as that either. Indeed, it may turn out cheaper to buy a package holiday than to see her in Britain!

Sunday, 6 December 2009

Scrooge Meme

image This is so last year ... but since I didn't participate then (well, I guess I play a fairly Scrooge-like non-participatory role every year), I will now. So there!

Have you actually read the book “A Christmas Carol” ?
Yes. When I was young books was all there was. If you haven't, read it online free, or print it out here.

Do you have any relatives you would rather not see (but have to) this Christmas?
Oh yes.

Do you have a cloying employee who is asking for something this Christmas, like more time off?
No, but if I did, I'd give them the time.

Have you ever been visited by a Spirit?
Not unless it was called Jack Daniel's and then not for many years now as, with the fibromyalgia, me/cfs, IBS, etc., my system has become pretty violently intolerant to alcohol

Who is the biggest “Scrooge” in your family?
Well, for the trait of misanthropy, I'm sure I'd win, though I'd argue that I've been given some pretty good reasons to dislike and distrust most humans. There's another contender for miserliness and mean spiritedness, but since I now only have one close relative, I'll not say who it is! :wink:

Have you ever eaten Roast Goose?
No, but I have had barbecued goat kid (on Christmas Eve) and a turkey so fresh that it arrived walking and bit the person who was charged with dispatching it. I call that justice!

How about a flaming plum pudding?
Yes, every flaming year. Well, it's tradition, init?

What is your favorite memory of a Christmas Past?
Despite being irreligious, a multi-lingual (Spanish, English, German & Latin) Christmas Eve carol service at the church in Los Cristianos, Tenerife; the *comedy* Nativity play put on by the village kids in El Palmar one year and most of all, the annual Three Kings parades in Garachico.

What is “Bah Humbug” about Christmas this year?
Everything. It will be a non-event. There's no public transport running, so I wouldn't be able to go out anywhere even if I could manage to, not that there is anything happening in a country where Christmas only means shopping. There's no company I want to keep, fuck all on TV that hasn't already been recycled a 1001 times and even the seasonal food leaves me fairly indifferent, because, a) I have to cook it and b) everything nice causes me more pain or discomfort.

Which version of “A Christmas Carol” is your favorite?
The one with Patrick Stewart as Ebenezer Scrooge [1999]

Tiny Tim – sweet or obnoxious?
I'm just full of admiration of how he makes the best of his situation. I find this so hard to do.

Via: Tippin' the Scales

Saturday, 5 December 2009

Google Maps utilised by CFS/ME and Fibromyalgia sufferers

mecfsmapGoogle Maps being used by CFS/ME and Fibromyalgia sufferers to raise awareness of the disease. The Web 2.0 resource utilized following finding of new XMRV retrovirus.

PR Log (Press Release)Dec 05, 2009 – Spurred on by new research suggesting a link between Chronic Fatigue Syndrome (CFS/ME) and a new retrovirus, XMRV, sufferers have turned to Google Maps to create a global picture of the disease.

The map, http://xmrv.me.uk/me-cfs-global-map.php, has had almost 4000 hits in the 2 days since its launch. The founder of xmrv.me.uk has a personal interest in raising awareness of CFS/ME & Fibromyalgia and hopefully seeing more investment in research into the disease. His sister has suffered with the illness for the last 16 years and been bedbound, in severe pain, for the last 4 years.

Of the Google Map an xmrv.me.uk spokesperson said: "It's about creating a community. Seeing sufferers on a map brings home the fact these are real people in real pain, not just statistics."
According to xmrv.me.uk this innovative use of web 2.0 does three things: "It allows CFS and Fibromyalgia sufferers to see who in their locality is also suffering from the illness; it may help spot trends or "hotspots" where the disease is more prevalent; and it helps sustain interest in this painful and debilitating disease."

Myalgic encephalomyelitis (ME), Chronic fatigue syndrome (CFS), and Fibromyalgia (FM) are debilitating illnesses which have no cure and leave sufferers' lives in ruins. Even those with the best ability to adapt and cope often suffer from the abuse of other well-meaning people who think the ill somehow brought these illnesses upon themselves or that the illnesses don't really exist.

A new study published in the journal Science found the retrovirus XMRV (xenotropic murine leukemia virus-related virus) in 67% of patients with ME. Only 3.7% of the healthy controls studied harboured this infection. Later, the researchers reported up to 95% of patients test positive for XMRV with antibody testing.

For more information: http://xmrv.me.uk

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