Monday, 8 August 2016

Severe M.E. Day 2016


There are according to the UK's National Institute for Health & Care Excellence (N.I.C.E.) body, per their document {Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management: NICE guidelines [CG53] Published date: }, three categories of M.E.: mild; moderate; and, severe. I have been diagnosed by my NHS hospital consultant as suffering "severe" Myalgic Encephalomyelitis or M.E. in accordance with this classification.

I average, over the year, fourteen-and-a-half hours of sleep in every twenty-four. However, there is no pattern to my slumber. Sometimes I sleep up to twenty-two hours in a row; at other times I am insomniant. On occasions I have inverted sleep patterns: asleep during the day, awake at night. 

It is only in the past few years that I have found a pain-killer that subdues the pain to a bearable degree; but with nasty side-effects, I only take when I am climbing the walls in pain. Nonetheless, most years I experience only one or two days totally pain-free.

I keep a spreadsheet of some eighty-five major symptoms from extreme ones like temporary paralysis to more mundane ones like temporary (from a few hours up to six months) dyslexia. The vast majority of my symptoms are neurological, from: the aforementioned dyslexia; dyspraxia; dyscalculia; hypersensitivity to odours, touch, vibration and noise as well as photophobia; forgetfulness - from names of individuals I know very well, including my own, to how to cross a road safely; dyscognition; loss of vision, or control of one or more limbs - so no driving for me; muscle twitching, spasms & cramps along with pins-and-needles; fibromyalgia; poor proprioception and equilibrioception - mixed with orthostatic intolerance is a recipe for daily falls (so I sport a pendant-alarm); hypersomnia; hyperalgæsia; chronic headaches & migraines; and so on…

The hypersomnia is another way of saying I suffer chronic fatigue or C.F.S. This is a symptom of many diseases including inter alia Cancer, Lupus, Fibromyalgia (F.M.S.) and Multiple Sclerosis (M.S.).

Like many, if not most M.E.-sufferers I also have several co-morbidities and separate conditions, that for me together create a downwards health-spiral. Over the past two visits to see my specialist, she assesses my over-all condition as having stabilised after years of deterioration. As yet, after more than twenty years of being ill, there has been no amelioration. I remain hopeful probably despite reason!

Whilst the majority of the year I am abed in what I quaintly call my bed-cell, I have better days when I can be taken out to do essential things like shop (mostly done on-line), visit the dentist or G.P. or optician or hospital. On my really good days I like to see friends. Most winters I go to southern Spain to benefit from their much more stable and warmer climate. It does not improve my M.E. symptoms, but massively subdues my various arthritides, thus reducing pain levels.

As I stated above, I am classified as a severe sufferer of M.E. There are however some sufferers who are so ill that they are on intravenous drips, they cannot do anything for themselves at all, and they have to lie abed constantly - often with blindfolds and noise-reducing head-phones. Thankfully, I have not pejorated to that extent.


Myalgic Encephalomyelitis kills.


The slogan reads:

Myalgic Encephalomyelitis
Cover Up

"I split my clinical time
between the two illnesses
(ME & HIV),
and I can tell you
If I had to choose
between the two illnesses
I would rather have H.I.V."


As a sufferer I am never - even were I to become well again - permitted to donate blood, plasma, tissues nor organs, except for medical research in the U.K.

[Image description: screen-shot from NHS Blood and Transplant website confirming my statement]

If you read this far, thank you. Perhaps next time you encounter someone suggesting M.E. is all in the mind, a life of Riley lying in bed all day watching television, perhaps you might consider challenging their misconceptions. Cheers!

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Over the years I have written several blog-posts on Myalgic Encephalomyelitis or ME. You can search for the articles using both those terms from the word index at the bottom of this page.
 

 

Saturday, 6 August 2016

Crunch & Munch thro' a Fabulous Brunch


This is a slightly amended version of my eponymous tripadvisor review.

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A couple of Thursdays ago, my house-mate drove himself, myself and our Costa Rican house-guest to Chester, a mediæval walled city built over the Roman settlement of Deva. Our first stop after parking centrally was ‪Carluccio‬'s for a late breakfast cum early lunch, hence brunch. None of us had ever sampled the chain's breakies previously.
 
[Image description: © Carluccio's, the said breakfast with juice & coffee]
 
We tried several dishes. I had perfectly poached eggs (no excess water) on a slice of grilled, freshly baked, Italian-style bread along with deeply tasty mushrooms. This was accompanied by pancetta (the Italian & Spanish version of bacon) which had curled into delicious pig-tails. Also on the plate was a small sausage, but as the chef could not guarantee that I might not have an allergic reaction to same, I donated it to my house-mate who wolfed it down along with his own. The lovely waitress whilst apologetic also offered me an extra egg or more pancetta if I so wished. However, for my appetite, there was a sufficiency on the plate.

 
[Image description: © Carluccio's, the listing from the menu for the "Magnifica"]
 
The considerate waitress also pointed out to us that we could enjoy the breakfast deal which for a mere £2 more than the set breakfast included a juice AND a coffee. Super value thus, at a tenner apiece. All three of our plates returned to the kitchen emptied of everything but the tell-tale marks of consumed foodstuffs!

For our house-guest & myself, we ordered Bellinis. Carluccio's version contains peach juice, liqueur and Prosecco. Not bad; but a tad acidic on the palate. However, I personally create a better Bellini than the aforementioned! ;)

Whilst Pâtisserie Valerie's offerings are good (I have consumed inter alia in London, Liverpool, Chester & Manchester), those at Carluccio's are excellent.

My only criticism, was that for the first time on entering this particular branch, and even though there were plenty of staff and not many customers, we had to wait a wee while to be asked to be shown to table. A minor inconvenience.

On this occasion I had no need to use the facilities; but from previous experience I can confirm there is a disabled W.C. accessible step-free.

If one intends to visit the Chester branch at peak times, I advise booking as it quickly fills up despite having a very large number of covers.

Additionally, before departing, one has the opportunity to purchase from the in-house delicatessen. Oh, all those yummy goodies - such temptation! %D
 
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The lovely folk at Carluccio's were kind enough to respond to my review and confirm their sausages are safe for me to nosh! Hurrah! %P

"Hi Colin
Thank you so much for taking the time to review your visit for brunch on Thursday morning. I would like to let you know for future reference that our sausages are fine for you to eat; I rang our supplier on Thursday morning while you were having breakfast but unfortunately did not get the information back until you had left. I will also be sure to remind our staff to keep their eye on the door at all times so as to make your visit even better!! We hope to see you again next time you are in Chester!
Thank you so much!
Emma
Chester@carluccios.com"
 
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Yesterday I was fortunate enough to be taken for an early dinner to my default Carluccio's and indeed restaurant in Hale (Altrincham, Cheshire). It's too soon for me to write another review, so I am adding here that the Chef's Special Ravioli al Limone, confirmed made by hand in-restaurant, is the best pasta I, or my companion, have ever tasted, eaten, ravished - it was absolutely divine!

[Image description: "Ravioli al Limone"]
The pasta itself was so light. No hint of stodginess whatsoever - take heed certain well-known "Italian" restaurant chains! Rather than being overstuffed like a Chesterfield sofa, as at nigh on all British supermarkets, the Ricotta cheese was like the filling to an after-dinner mint. The toasted pine-kernels are a perfect combination: nether overpowering the lemon sauce nor vice versa.
 
Only available through August, so sample it whilst still on the menu! %PPP
 
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Tuesday, 2 August 2016

Ads Are Killing Tumblr


[Image description: screen-shot of my tumblr home-feed]


I have no objection to adverts per se, but the bl**dy things are now appearing in the side-bars as well as on one’s home page as well as the all-flashing, all-dancing really irritating ones there. The only way to avoid moving, as opposed to static, adverts now is to go directly to archives. However, tumblr has begun to block access to archives, there are a couple I can no longer access e.g. jofelem and ruppe.

                                     *

I wrote to tumblr prior to the most recent changes:

“colinrhunter
Jun 7, 8:57 PM EDT
I would like to give some feed-back on your advertising strategy. I have no issue with you placing ads in my tumblr-feed. However, if you are going to do so I would appreciate being able to advise you when it is inappropriate. I do not frequent the cinema, so telling me about films (which you do every few images) is irrelevant. Nor do I watch much television - hence my being on tumblr and other social media. Whilst some chaps do now wear make-up, I am in my fifties and have only donned make-up for am-dram performances and costume parties. So ads for make-up products are irrelevant. Why not ask folk what type of ads they would actually like? I suspect most reasonable folk accept the need for advertising on "gratis” social media platforms and therefore would be content to provide you with info that might assist you in better targetting adverts. Personally I should like ads on latest book releases or Art events in my locality or at the very least my country (not the USA). I should also appreciate ads on eateries, musea, community events, theatre, queer (not straight) dating, political meetings, public lectures, and so on. If you need to sell me products then know that I consume organic & up-market (high-end?) foodstuffs and I like a good bottle of wine with my evening meal. At the moment, all the advertising posted on my tumblr is irrelevant. The ad brush is too broad. You need to use a fine brush to better target specific markets. At the moment your ads are intrusive and annoying mainly due to their irrelevance. Colin-Roy Hunter"

                                     *

More than a week later I did receive the courtesy of a response, though as one can infer for themselves rather patronising and it failed to really reply:

“ Dave S (tumblr)
Jun 16, 12:22 PM EDT Hello,
Thanks for contacting us and giving us your thoughts on these ads. We want to make sure your experience here is the best it can be, while also making sure that we have the resources to keep Tumblr around for a long, long time. Rest assured, we’re collecting everyone’s comments on this and passing them along to the rest of our team.
You can learn more about our ads, get instructions for managing your interests, and even find out how to opt out of interest-based ads in our help docs:
https://www.tumblr.com/docs/en/relevantads
Thanks again for your feedback.
Dave S Tumblr Platform Support”

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Due to neurological disability, I am very sensitive to stimuli. I can just about cope with video in my feed, but additional moving adverts is sensory overload for me. This leads to sharp & acute eye-pain and head-aches. Therefore, it is with great regret that I must leave tumblr.

Thank you to all those who have kindly shared their Art, their lives, their fears & fantasies. Thank you to to those who chose to follow my blog. Most of all thank you to the folk who chatted with me, flirted with me &/or discussed their Art with me. Truly appreciated.

Anyone who wishes to can follow me on:

facebook - colin-roy hunter criquaer
twitter - @criquaer
google+ - colin-roy hunter
linkedIN - colin-roy hunter
personal blog - http://crippledqueeranglo-europeanranter.blogspot.co.uk/

If matters do ameliorate, I should very much appreciate someone apprising me……
%D

Saturday, 30 July 2016

Why I Share Personal Information Publicly


The following poster was produced by an MS group, but is equally relevant to ME, Lupus, FMS, etc.

The slogan reads:

I'M NOT ASHAMED OF MY DISEASE,
BUT I WISH I DIDN'T HAVE IT.

I HAVEN'T DONE ANYTHING TO BRING
IT UPON MYSELF, BUT I'M DOING
EVERYTHING TO FIGHT IT.

I SPEAK OPENLY ABOUT IT IN ORDER
TO RAISE AWARENESS.
 

I personally pondered a while before reaching the decision that I must publicise the effects of my ‘invisible illness’. When I am out and about, it is due to my experiencing a relatively good day. The vast majority of the time folk do not see me abed in my bed-cell swollen, in pain, suffering various neurological symptoms that militate against quotidian life let alone social contact.

Alas, in today's society where it is now acceptable to bait & hate disabled folk, it is necessary to provide personal accounts of suffering to counter the accusations of “faking it” &/or hypochondria and undermine the MSM lies & propaganda.

As I am reasonably literate and compos mentis some of the time, it is my personal moral duty to make every attempt I can to stand up for disability rights.

If my posts annoy you, feel at liberty to turn off notifications.

For those of you who tolerate my posts, thank you.

And those of you who are kind enough to share the occasional post, my deepest gratitude - and I endow you with brownie-points & fairy-dust! %D

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MS = Multiple Sclerosis
ME = Myalgic Encephalomyelitis
FMS = Fibromyalgia

MSM = main-stream media

Sunday, 3 July 2016

Bored? - The best is yet to come.

 
[Image description: slogan - "THE BEST IS YET TO COME"; © n/k]

I am coming up for fifty-two and I genuinely say and believe that the present is the best part of my life. No regrets. Live each day to the fullest you are capable of. Most days I am trapped abed; but the days I am up & about are very precious. Nonetheless, even those days I am trapped in my bed-cell, through the æther I live to the fullest extent I can.

If you are bored - go for a walk (something I can no longer do);
If you are bored - read a book (something I can rarely do);
If you are bored - cook a meal for a friend (something I can do from time to time with some assistance);
If you are bored - draw, paint, create whatever (something I can no longer do);
If you are bored - go out and dance alone (something I can no longer do) and dance and dance and dance;
If you are bored - write a poem (something I can still occasionally do on those days when I have some nous);
If you are bored - well, you only have yourself to blame. As Zelda Fitzgerald said, "she refused to be bored chiefly because she wasn't boring." ;)

 
Live life whilst you can -
you never know when it will be taken from you!


[video: Pet Shop Boys - Being Boring]