Thursday, 29 May 2014

Home Decorating

Unable to sleep for the second night in a row, I decided to spring-clean my blog. Well, there was nothing I wanted to clear out - I am a bit of a hoarder! So, I decided instead, after two years of looking at the same wall-paper, to change the décor.

I have gone for a more toned-down, less harsh on the eyes, muted, over all ambience. For me, this is less startling and much less painful to look at than the starkness of brilliant white, due to my photophobia. I did change the main font colour to chocolate brown, but discovered it was harder for me to read than more conventional black.

Do let me know what you think, as constructive criticism is always welcome. Nonetheless, I hope you like the new look. %)

Wednesday, 28 May 2014

After Ezekiel

Today's sermon is based on the notable Prophecy of the Shepherd & the Sheep, after Ezekiel chapter 34: verses 1 to 31 of New International Version (NIV) of the Bible.


The polemical word came to me: "Mensch, apprise the politicos of Britain; forewarn and inform them: 'This is what the Sovereign British People say: Woe to you politicos of Britain who only take care of yourselves! Should not politicos take care of their folk? You eat five-star cuisine, clothe yourselves in fine tailoring, designer footwear & expensive accessories, but you do not take care of your folk. You have not supported the poor, nurtured the NHS nor cared for the disabled. You have not included the misfits nor acknowledged the lost, the suicides and deaths. You have ruled Brits harshly and brutally. So Britons despaired because there were no leaders with true vision for the people and their well-being, and whilst unemployed or under-employed or under-paid, they were forced to rely on food-banks and charity hand-outs. Brits wondered what was to become of them; from Britain's mountains through the hills to the low-lands all hope has been dispersed. No-one in authority deigned to research or even look at the people's despair.' "


" 'Therefore, you politicos, hear the polemical word: As surely as I live, declares this Mensch, because my country lacks good leadership and so has been plundered by the 10% and has become easy-money for international conglomerates, and because you politicos did not support my folk but cared only for your own pecuniary interests rather than my folk, therefore, you politicos, hear the polemical word: This is what this Mensch says: I am against the politicos and they will be held accountable to my folk. I will remove the establishment from having power over my folk, so that you politicos can no longer be solely self-serving. My country will be rescued from your grimy paws, and it will no longer be your cash-cow.' "


" 'For this is what the Mensch says: I myself will seek out my folk and look out for them. As a shepherd looks after his scattered flock when s/he is with them, so will I look out for my fellow countrymen. Britons will look to bring love and hope to those lost in confusion and despair. Britons will come together from all corners of the United Kingdom and reclaim their land. Hope will be rekindled near and far throughout the land, both in town and country. All will have sufficient to eat, in line with the Universal Declaration of Human Rights, and it will not simply be mass-produced fast-food, but nutritious alimentation. The workers will be permitted sufficient rest to develop a better work-life balance, declares the Mensch. Brits will commemorate those who died as a result of the politicos' policies. We will support those with impairments, disabled by societal barriers, and the impoverished; but those who were well-dressed and in positions of power shall be brought to book. Britain will become a country known for its justness and justice.' "

[Image description: various colours, pile of gourds & pumpkins]


" 'As for you, my folk, this is what the Mensch says: the courts will judge all equally with impartiality whatever one's status or wealth or ethnicity or gender or sexual orientation or creed. It ought to be enough for all to settle for a fair citizen's income; there should be no place for greed and avarice and hoarding so that others cannot share in Britain's bounty. All must have a seat at table; none should make do with mere crumbs.' "


" 'Therefore this is what the Mensch says to you, my fellows: See, the courts will judge between the impoverished and the 10%. Because the 10% have wheedled and tricked and manipulated to enrich themselves whilst impoverishing the rest, Britain will care for its own folk, and they will no longer be plundered. The courts will pass judgement. Brits will have a genuine democracy where every voice is heard and every vote counts. We will have leaders who are inspired, have vision for a better tomorrow and who will govern justly and wisely. Menschlichkeit will be the norm in the personal sphere: social justice will prevail in the political.' The Mensch has spoken."


" 'Britain will be a land of peace where all are welcomed as fellow siblings; it will rid itself of predatory free-market economics and look to a more sustainable future. The country will be united as one and will come to be and be seen as a beacon for all peoples of our world. We will address issues of climate change and do our utmost to restore the planet, so that all can be nourished by all that Nature has to offer. Brits will be secure in our land. We will know that Justice prevails, when the courts rule against poor working practices like unpaid overtime or excessive work demands, and gaol unsuitable employers. Britain will no longer sell its workplaces to the highest bidder and will tame all-devouring capitalism to serve we the people, not vice versa. The bounty of the country will be shared equitably amongst all citizens, no longer mainly the 10%; and we shall no longer be the laughing-stock of more civilised countries. Then Brits will know Menschlichkeit and all will be Menschen one unto another', declares the Mensch. 'You are the people, the people of this land, and Britain is our country', declares the Mensch."

[Image description: landscape wit mountains & full rainbow arc]


Original text © NIV

The word of the Lord came to me: “Son of man, prophesy against the shepherds of Israel; prophesy and say to them: ‘This is what the Sovereign Lord says: Woe to you shepherds of Israel who only take care of yourselves! Should not shepherds take care of the flock? You eat the curds, clothe yourselves with the wool and slaughter the choice animals, but you do not take care of the flock. You have not strengthened the weak or healed the sick or bound up the injured. You have not brought back the strays or searched for the lost. You have ruled them harshly and brutally. So they were scattered because there was no shepherd, and when they were scattered they became food for all the wild animals. My sheep wandered over all the mountains and on every high hill. They were scattered over the whole earth, and no one searched or looked for them.
“‘Therefore, you shepherds, hear the word of the Lord: As surely as I live, declares the Sovereign Lord, because my flock lacks a shepherd and so has been plundered and has become food for all the wild animals, and because my shepherds did not search for my flock but cared for themselves rather than for my flock, therefore, you shepherds, hear the word of the Lord: 10 This is what the Sovereign Lord says: I am against the shepherds and will hold them accountable for my flock. I will remove them from tending the flock so that the shepherds can no longer feed themselves. I will rescue my flock from their mouths, and it will no longer be food for them.
11 “‘For this is what the Sovereign Lord says: I myself will search for my sheep and look after them. 12 As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness. 13 I will bring them out from the nations and gather them from the countries, and I will bring them into their own land. I will pasture them on the mountains of Israel, in the ravines and in all the settlements in the land. 14 I will tend them in a good pasture, and the mountain heights of Israel will be their grazing land. There they will lie down in good grazing land, and there they will feed in a rich pasture on the mountains of Israel. 15 I myself will tend my sheep and have them lie down, declares the Sovereign Lord. 16 I will search for the lost and bring back the strays. I will bind up the injured and strengthen the weak, but the sleek and the strong I will destroy. I will shepherd the flock with justice.
17 “‘As for you, my flock, this is what the Sovereign Lord says: I will judge between one sheep and another, and between rams and goats. 18 Is it not enough for you to feed on the good pasture? Must you also trample the rest of your pasture with your feet? Is it not enough for you to drink clear water? Must you also muddy the rest with your feet? 19 Must my flock feed on what you have trampled and drink what you have muddied with your feet?
20 “‘Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep. 21 Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away, 22 I will save my flock, and they will no longer be plundered. I will judge between one sheep and another. 23 I will place over them one shepherd, my servant David, and he will tend them; he will tend them and be their shepherd. 24 I the Lord will be their God, and my servant David will be prince among them. I the Lord have spoken.
25 “‘I will make a covenant of peace with them and rid the land of savage beasts so that they may live in the wilderness and sleep in the forests in safety. 26 I will make them and the places surrounding my hill a blessing.[a] I will send down showers in season; there will be showers of blessing. 27 The trees will yield their fruit and the ground will yield its crops; the people will be secure in their land. They will know that I am the Lord, when I break the bars of their yoke and rescue them from the hands of those who enslaved them. 28 They will no longer be plundered by the nations, nor will wild animals devour them. They will live in safety,and no one will make them afraid. 29 I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations.30 Then they will know that I, the Lord their God, am with them and that they, the Israelites, are my people, declares the Sovereign Lord. 31 You are my sheep, the sheep of my pasture,and I am your God, declares the Sovereign Lord.’”

Saturday, 24 May 2014

My MEstory: Life with Myalgic Encephalomyelitis

Well, cannot say I have enjoyed the best of health this past month or so, that is International M.E. Awareness Month. I have felt fairly terrible and really brain-fogged. So, writing an in-depth blog-post has not been possible. I have however managed to post on social media. Herewith I have collated some that at least give some health background and updates on my health. I would not normally post about my health, but in order to raise awareness, folk need to know what one is like when they cannot see you, as so often our illnesses are hidden or invisible.

Apologies up-front for the sight-impaired as there are no image descriptions as I just do not have the energy to do so at the moment.

4th May

Oh I know this one…

5th May

There are always folk worse than oneself to prevent one wallowing in self-pity. I am so fortunate in many ways: I have had a 'normal' life. This poor young girl has suffered terribly and is still in so much pain. Bless her & all of us with M.E.!!!

6th May

Just managed forty-five minutes out of bed, long enough to: descend stairs; eat cereal & fruit; take medications; turn on dishwasher & washing-machine; remount stairs; and, collapse back into bed. Now stiff, achey and in pain - thanks M.E.!!! %S

7th May

Well, managed a whole twenty-five minutes out of bed. Food consumed. Meds taken. Knackered. Hoping for dry & warm change to the weather…

Local weather prognostication is for rain right through to & including Sunday. So confined to my bed-cell then!!! %SSSS

8th May


So funny!!! %DDDDD

9th May

Had drink (by bed). No meds. No food. Plenty of pain. Stayed awake for about 150 mins. Now back to sleep. Bl**dy M.E.!!!! %SSS

10th May

I'm never going to recall … (another M.E. day with resulting brain-fog) …


Another nasty one: today is world #Lupus day.

12th May

Alas I do and have done officially since 1998, although I had the symptoms for years beforehand…

I shall shortly be posting from the international vigil; for those not wishing to light a candle, p'raps this status could be posted for an hour or so in support of all with invisible illnesses. Inter alia I have myalgic encephalomyelitis (ME), fibromyalgia (FMS), irritable bowel syndrome (IBS), Raynaud's syndrome, osteoarthritis (OA), a gout-like arthritis, … Only the latter gives visible symptoms when I swell up like the Michelin-man. Thanks for not judging by outer appearances. %)

Oh boy, do I know this feeling…

This is what it is like for many in the UK. I am so lucky in that the G.P. who diagnosed me supported me for some ten years. My hospital consultant is a specialist in M.E. and is totally supportive too. I truly give thanks for my good fortune having read some awful tales from fellow M.E. sufferers (PWME).

13th May

Yesterday was M.E. Day, this is also M.E. Week and Month… Awareness-raising continues! %)

M.E.Association released NOTHING for #InternationalMEAwarenessDay.

Action for M.E. released this (pdf):

15th May

My name is Colin-Roy, and I'm a spoonie!

Spoons are used to go to the loo, to think, even just breathing… %S

16th May

The M.E. scene (they call it chronic fatigue syndrome or C.F.S. in U.S.A.) from The Golden Girls. I do not recall this episode, but no doubt I must have missed the odd one or two. Susan Harris, creator and producer of the series lived with ME/CFS for many years.

17th May

By now you are probably all aware that it is International M.E. Awareness Week (part of International M.E. Awareness Month). I am grouping all my relevant blog-posts in a list below, just in case you missed one or wish to revisit one.

My #MEstory -

Another #MEstory; a day in my M.E. life -

A personal classification of pain as I experience it -

Brain-fog or M.E.-fog or fibro-fog or … -

A poem I wrote about the realisation of loss and grieving for my old self -

Finally a guest poem by Sophie Turner aka bambimax -

18th May

I have physical-, emotional-, spiritual-, sexual- and mental-health issues: how can one separate or justify segregating elements; one ought to be treated holistically.

19th May

Since coming back from Spain, my state of health has dramatically deteriorated. On two out of three days I am bed-bound. Most of the week I am housebound. My anxiety levels are soaring. I am falling further and further behind on tasks and communications. If you are awaiting a response from me, please be patient.
And for those wondering how I manage to post updates & so forth: this is my way of diverting myself from obsessing about pain, anxiety & so forth and trying to refrain from creating a downward spiral.Your continued forbearance is appreciated. %)

Just need to ride it out. Apparently we're due a heat-wave for some six weeks or so. Hopefully, in that case I should ameliorate. Contacted social services, just waiting for them to get back to me about re-assessment. Once sorted I am hoping I'll calm down as should end up eating more regularly. All will be well. %)

20th May

21st May

Whoo! Managed a whole hour out of bed; now back to bed-cell. However, eaten, hydrated, medicated and did a couple of easy chores. Now exhausted & in pain again. Heigh-ho - life with M.E.

22nd May

Thanks to Michelle offering me a lift to & from the polling-station, I am now able to go to cast my vote.

23rd May

Not wide awake - more sort of half semi-conscious - as bones knew rain was on its way. And sure enough precipitation is falling. Heigh-ho! %S

I realise the month is not over yet; but I thought I had better do this whilst I am reasonably alert and have some energy.

Thanks to all: carers and friends; campaigners, posters and sharers; scientists and researchers; consultants, doctors and nurses; and to all those with these invisible illnesses who support each other via social media. %)

Thursday, 15 May 2014

Addlement or Brain-Fog

Yesterday, for the vast majority of the day, I was completely addled: my brain just would not function properly; I could not think straight, coherently. Everything I tried to read I misread due to temporary dyslexia. Similarly everything I heard I misheard due to a kind of aural dyslexia. Incoming messages were all misconstrued, twisted. Even when I recognised that something was wrong, I could not work out what exactly it was. Apart from not being able to talk or read, I could not concentrate sufficiently to watch television or listen to the radio; even viewing a familiar DVD left me flummoxed - I was incapable of following what was going on, as large chunks of the narrative seemed to have been lost, and I was left floundering in befuddlement. Obviously, using social media was totally out of the question, which meant no social contact for me whatsoever, as at the moment I am residing alone and without social services assistance.

Oddly - as many days I do actually forget to do so - I remembered to put on my pendant-alarm. This is for when I fall, a frequent event, in case I need to call for assistance. I was recommended it after an accident in which I fell backwards hitting my head on a door-jamb and leaving me confused on the floor for a wee while.

[Image description: blurry image of grey granite floor]

Back to yesterday: I was suffering from brain-fog (you may have come across the term as ME-fog or fibro-fog or mental fog or several other terms). Well, until I started writing this post, I did not know that conventional medicine terms brain-fog as “clouding of consciousness”. This is where:

The sufferer experiences a subjective sensation of mental clouding described as feeling "foggy".

Dr. Abhijit Chaudhuri, a consultant neurologist, on Action for M.E. (AfME)’s site, describes the condition as a “functional somatic symptom” that is confirmed in brain-scans and is NOT all in the mind (as some might have sufferers of M.E. believe). AfME’s link is worth reading for a broad range of perspectives and suggestions on potential causes and possible treatments (don’t get your hopes up!).

Today the mists have cleared - but for how long!

UPDATED (11.20)

Have been attempting to catch up with SM and came across Tom Kindlon's post with an infographic loaned from ME Awareness: Words & Pictures - a great resource for ME information:

Spooky that brain-fogged mind's think alike!!! Well it is ME Awareness Week and ME Awareness Month. %)

Monday, 12 May 2014

International M.E. Awareness Day, 12th May 2014

Myalgic Encephalomyelitis is the official World Health Organisation (WHO) name for M.E. It means something like pain & swelling of the brain & spinal chord. There is a sort of British cabal of psychiatrists who believe, for it is a matter of faith for them despite evidence to the contrary, that it is a psychiatric problem.  Interestingly the same argument this côterie put forward for explaining M.S. way back, and so on… Thankfully neuroscience and break-throughs in bio-medical research are countering their argument.

Unfortunately, making matters complicated for researchers, very few sufferers have just M.E.; many of us suffer from multiple conditions plus co-morbities. Inter alia I have myalgic encephalomyelitis (ME), fibromyalgia (FMS), irritable bowel syndrome (IBS), Raynaud's syndrome, osteoarthritis (OA), a gout-like arthritis, … Only the latter gives visible symptoms, when I swell up like the Michelin man. Thanks for not judging by outer appearances.

For this awareness day I plan to keep a live-blog of events as they concern myself throughout the twenty-four hours. This means that the blog will be hopefully constantly, but most likely sporadically updated. So please come back from time to time.


03.27  Much earlier than is typical I am awoken from a feverish nightmare after four hours sleep. My heart-rate is very rapid. It is the sensation of being almost in an anxiety-attack. I take several deep breaths. Damp, I have to remove my bedwear, which with stiff limbs is no easy task. Then I shakily and with a great deal of pain succeed in raising my plastic beaker of water and take a gulp. Time to distract myself now from the still not fading nightmare, the slowing but yet still racing pulse and the coursing, throbbing pain.

05.12  Heart-rate has slowed, but still not back to normal. Have posted and responded to various social media (SM). So tired. Need to sleep; so going to have another attempt. Going to use some visualisations to try to assist me in going to a happy place.

05.37  I chose the wrong time to try to sleep. A downpour means my arthritic bones have gone into hyper-awareness and I am now in fairly intense pain. No matter what position I place myself in, the pressure is like a slow torture, gradually building in intensity. I just feel shattered.

05.43  A pressure head-ache has begun to throb. Heart-rate slowed down and returning to normal. Eyes are beginning to react photophobically: I have had to reduce the computer-screen's luminosity down to minimum. Shall have to stop typing now, as acute and sharp stabs of pain in my head and eyes.

09.00  Another nightmare wakes me up. This time, a regular type for someone who is mobility-impaired, I am faced with flight after flight of stairs. Whilst I rarely dream I am in my wheelchair, in this narrative my companion is so seated. Neither of us can escape where we are.

09.05 More rain: sudden increase in pain all over my body. Still feeling exhausted and in need of more sleep. I drop off quite quickly, but sleep fitfully.

11.12  Really heavy rain lashing on the roof and the windows brings me back to consciousness. Another wave of pain. I distract myself with the lovely aroma filling the room: the negative ions of summer rain. I fall back to sleep.

13.26 Awaken, stiff, achey; but headache has dissipated and level of photophobia has ameliorated - can cope with ordinary spectacles (rather than sunglasses) in my bed-cell, although still with the blind down (sorry #ConDems!).

13.52  Email my lovely contact at Altrincham JobCentre Plus, who has been kindly trying to help me extract information, even just a response from Bolton Benefit Centre. After twelve fruitless months of trying to get info, some of which is actually offered by DWP in their correspondence, from Bolton, I eventually had to follow through with a threat to involve my MP, Graham Brady, chair of the backbench 1922 Committee. He has so far succeeded in getting Bolton to contact ATOS and the DWP FOI section; but as yet no explanation as to why they refused/failed to respond to my correspondence and that of Altrincham JCP.

14.17  I received an invitation, which I accepted, to attend a speech by Ed Miliband in Manchester this evening. I have just sent my third email trying to determine whether the venue is accessible. It seems the Labour party are not responding. However, it is a lot of effort for me to wash, dress, travel and attend such a session (I will be ill for several days afterwards) and also will cost me the best part of fifty pounds in taxi fares. I do not wish to waste my energy nor my money.

14.27  The venue IS accessible. I can go. Now I need to find WoWCampaign's Ian Jones' question suggestion and write out a question, just in case I have an opportunity.

14.51  Made it to ground floor without falling - a god job as I forgotten to put on my pendant alarm. I am about to bring in the shopping and put away the chilled stuff. The rest will have to be done another time.

15.21  In order for me to be able to move, I need to warm up my muscles in a bath. This is risky for me, as I have poor equilibrioception and no-one to help me out of the tub. Fingers crossed that today will not be one of those where I get ultra dizzy and collapse. Well, if there are no further updates, you know what has happened!!!

16.14  Eventually made the taxi-driver realise that I would need his assistance in transferring my wheelchair into his cab. Despite being cloudy in Manchester, I needed to sport sunglasses to cope with what was for my sensitive eyes too much brightness. The cab-driver was happy to chat away, so I remained chilled listening to his tales.

16.47  The taxi-driver gets me to the disabled ramp and unloads the wheel-chair; however, made no offer to help me into it. I succeeded in setting up the chair and sat down and then wheeled myself over to and down the ramp. A lovely young Manchester lass offered assistance, for which I thanked her, but declined.

17.05  The doors to the venue are opened and we all file in.

17.10  Noticing a gaggle of wheelchair- and mobility scooter-users I wheeled over to join them and in so doing think I recognise Wayne Blackburn. And indeed it was. It was great to catch up and have someone to natter with.

18.00  Ed Miliband gives us his key-note speech on the future of the NHS. He is supported by Andy Burnham, shadow health secretary. He goes straight into a Q&A session. One questioner from Liverpool, an unemployed REMPLOY worker, enquires to treatment of the disabled and the WCA (work capability assessment). Ed Miliband categorically stated that he would support those with disabilities who can work into the world of work and those were unable to work would still be supported by the state.

19.05  I have to depart, I needed the loo (wc) & meds and was fading fast. My blood pressure was dropping.

19.10  Ablutions completed and offered assistance by passers-by on entering and exiting in relation to the door (which might suggest more about toilet design than my abilities).

19.17  Taxi arrived on time and swiftly carried me home, breathless from wheeling my chair and having to speak.

19.59  I am back home and back on-line after a technical hitch - it was the wheel of doom and I could do nothing to get rid! I am breathless, shaking and suffering muscle spasms in my left arm and thighs. I need to eat, drink and take meds. then I shall back fill what has been going on.

20.51  Tucked up in bed. Now suffering tremors and muscle spasms all over. The house thermostat says it is warm on every floor. My body is not so sure! My eyes feel heavy. My heart-beat is slightly erratic from all the physical exertion.

22.44  Was trying to watch the news, but my hyperacuity, or noise-sensitivity, means I have yet another throbbing head. Going to settle down now and hope for a good night's rest.

Thanks for reading, folks. %)


Well, after a good ten hours sleep, uninterrupted by nightmares nor fever, I awoke to:

* a mouth-ulcer on the end of my tongue;
* eczema patches around my eyes;
* heavy, prickly eyes;
* photophobia;
* a throbbing headache;
* fingers swollen to the size of chunky sausages;
* painful breathing due to costochondritis flare-up;
* pain in my hip & lumber due to aggravating the osteoarthritis;
* ear-ache in my right ear;
* an irritatingly itchy skin-rash all over;
* cold-like or allergy symptoms to goodness knows what;
* zits around my T-zone.

I have been awake an hour and a half and as yet still have been unable to leave my bed. I have no water and am rather thirsty. Shall have to wait till body can move though.

Obviously yesterday was not a completely typical day, as I would not normally go to political meetings! But dealing with bureaucracy - not solely DWP - is pretty much a regular occurrence.

I expect to be knocked back for a couple more days yet due to having gone on that wee jaunt. Sometimes the health price is worth paying.