International M.E. Awareness Day 2020

I have not been well enough at this time of the year since 2017, so this is my first blog-post to mark the international Myalgic Encephalomyelitis awareness day in three years. (Underneath this blog-post is a list of words and terms, click on any of the ones referring to M.E. to find some of my previous outpourings.)

Under the UK’s current N.I.C.E. Guidelines and by my NHS hospital specialist, I am classified as having the severe form of M.E. There are three official categories: mild, moderate, & severe. However, the severe category itself covers a range of folk from those who are mostly bed-bound, like myself, to those who cannot ingest food or water and have to be kept alive via feeds.

In my previous blog-post I wrote:

“M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.”

I have mulled over the possible threat to my privacy and so forth, but have decided to publish the full list of my conditions. Obviously I have had to hide certain personal details to prevent identity-theft. I am not publishing this list to garner sympathy. My hope is that the reader will come to realise just how ghastly this disease is in its depth and breadth of conditions and symptoms. Many of these are covered in the broad and all-enveloping rubric of the term Myalgic Encephalomyelitis, many are classed as co-morbidities; but which is which is very much still debated.

The list below has not been updated since 2016. However, since that time my medications have altered. I have left the original medicines listed so one has a sense of what is or, in most instances, is not available.

The European Parliament recently unanimously voted for more funding for research into the biological causes of M.E., because despite millions suffering across Europe (and indeed the World), very little is invested into medical research. Individuals with the worst form of M.E. have worse quality of life scores than any other measured illness, including cancers and AIDs. Because we are hidden in our homes, we are ignored or dismissed. Please consider donating time or money to a Myalgic Encephalomyelitis charity or research proposal.

Visiting My Local Supermarket During Lock-Down

Well, what a morning - totally exhausted!

Breaking my quarantine:

After twenty-two days of self-isolation, my stores of foodstuffs have been depleted. Whilst I have succeeded for the past fortnight to get fresh aliments and some staples home-delivered, I have been unsuccessful in my attempts at obtaining a delivery-slot from local supermarkets, and this week I could only source a small, insignificant basket of goods from a farm. Many disabled folk who rely on home-delivery have been unable to get their usual slots and there are many who are going without food. The national government has been extremely ill-organised in its whole dealings with regards the pandemic, and appears to have had no contingency plans in place/ However, my local authority ,Trafford, is telephoning folk it believes may be vulnerable and need support to check whether they do so. I have been very critical of my local authority in the past few years, but it is good to be able to applaud them for acting so pro-actively in this instance.

Preparations:

I awoke really early so I could be ready to shop at my local supermarket, Waitrose, along with the other vulnerables during the first hour of the opening-hours set aside for us. My housemate, Rico, who often acts as my principle carer, helped me dress as it was way too early for one of my regular carer calls. I decided upon clothing that could be stripped and go straight into the laundry upon my return home. I donned a long-sleeved top over a T-shirt, gloves to keep my hands germ-free and a scarf, in case it was needed to wrap around my face. Rico loaded the wheelchair into the back of the car. I grabbed a load of bags and my wallet, and we set off a little after nine, store opening-time.

At the supermarket:

I was rather pleasantly surprised at how organised everything is. There are markers at two-metre intervals so shoppers queuing can ensure they retain social-distance. For the most part customers kept their distance bar one odd curmudgeonly old git. The queue moved quite briskly and we were less than five minutes outside. Staff were extremely helpful. They were also very polite and apologetic to the three sets of customers who complained (in that time-frame) at them because they were not permitted to enter until ten and were thus turned away. The first hour of shopping has been reserved for the past fortnight at most large shops for the elderly and other vulnerable folk; and this fact has been in the newspapers and on the news programmes. If individuals have missed a trick, then that is their problem and they ought to accept their oversight with good grace rather than taking out their frustrations on hard-working staff. Let’s face it: we are meant to be staying at home and not visiting others, so most would not have good reason to be in a rush to be elsewhere!

A manager taught me how to use self-scan. I don’t recommend it for big sprees when this is all over, but probably good for a quick grab-and-go shop. However, it meant only I was handling the shopping. I wheeled round the whole store, whilst Rico pushed the trolley and packed the bags as we went along the shelves.

All the counters (butchery, fishmongery & deli), the café and the self-serve coffee-maker were shut down; but the bakery is still churning out fresh loaves - ours was still warm when we picked it up. The flour area was devoid of anything other than bread-making flour, but with no yeast available it was standing untouched. I had a kind server hand me down a bread-mix containing its own yeast medium, so if necessary I can make some bread of my own - well, actually, Rico is the resident bread-baker, so it would be over to him.

Normally, at the point where we reach the café, we should have stopped for a cup of coffee and a snack, a short rest and then continue with the task at hand. However, the café has now been turned into an extended holding area for customers awaiting to be allocated a cashier to assist.

The freezer-zone looks as if locusts have passed through. Plenty of frozen spinach to be had though! Toilet-rolls are aplenty, but rationed to two packs per shopper. We have plenty from our BREXIT stores, but did buy another pack of kitchen-roll. There were hardly any tissues, but I succeeded in finding a double-pack of Kleenex on a low-shelf - one advantage to being in the wheelchair. Similarly, there were no general cleaning sprays.

Results:

Thankfully, barring a handful of items, I obtained everything on my extended shopping-list. I am thankful that This Easter I shall be able to have a traditional lamb-roast, even if the friends who may no longer attend are absent. I shall certainly raise a toast to absent friends and say a few prayers for them.

[Image description: kitchen-counter covered in shopping and food preparation.]

Afterwards:

One hour and fifteen minutes from leaving the house, we stepped back over the threshold. I immediately stripped off my outer-layers, gloves & shoes and went to wash my hands. After stowing the shopping and washing the fruit & vegetables, intermittently re-washing my hands after dealing with packaging, I returned to my room and had a hot soapy shower. Hopefully, I shall have managed to bypass the virus. I should not need. To go out again for another three weeks or so. Thus there is time to see whether I do develop any symptoms. Fingers crossed. And my prayers for all.

Coronavirus versus Terrorism

[Image description: two panel cartoon strip; panel1, an elderly chap sitting in front of a television-set watches a scared-looking news-reporter shout, “WHAT CAN WE DO TO LESSEN THE GRIP OF FEAR FROM TERRORISM?”; panel 2, the viewer breaks the fourth wall, looks at us with a sly smile having “CLICK”-ed his remote-controller and turned off the TV. The image is by and © Bruce Beattie and was published in the Daytona Beach News-Journal.]

I shared the above cartoon on my facebook account in 2013. Since then the news media have reported endless stories of terrorism. As a resident all my life of England, I grew up with the constant threat of terrorism from the IRA. There were bomb-threats when I worked in the city of Manchester in the 1980s. I thankfully missed the Manchester bombing back in 1996 due to fortuitous circumstances. I and many others became inured to the threats because we lived with them daily. The peace-process ended with a stand-down of the opposing forces starting in 1998. Not long afterwards so-called “Islamic” terrorism (which has nothing to do with this peaceful religion) became the main focus of news media. Despite much of the hysteria around terrorism, statistically one is more likely to die from an injury in the home or a vehicle crash.

I question whether folk have now become jaded to the almost incessant news of fresh “terrorist“ attacks, and hence the current media compulsion to use scare-tactics regarding a virus? The death-rates as currently published, are lower than for ordinary influenza (‘flu). The media are fanning an hysteria. Why? Scared citizens can be controlled much easier than rational, thinking individuals. It is also a convenient cover for powers-that-be to quietly, or otherwise, remove rights and curtail freedoms.

Perhaps terrorism and coronavirus are intrinsically the same, means by which to cower and control populations who otherwise might become aware of other matters which élites wish to hide.

Panicking is totally unhelpful. Pause to think and ponder. Evaluate risk calmly. Postulate what the powerful are actually up to.

[Image description: graph indicating death rates for age deciles gradually increasing from 10 (0.2%) to 80+ (14.8%)]

BREXIT Blues

Normally my first post of the year is the publication of one of my poems. I am breaking that tradition this year. I am not celebrating the more than six-hundred thousand viewings of my blog either.

[Image description: on a grey background the words “Sad, sad day. #BREXIT.”]

As a blog that proudly has the word European in its name, I am compelled to lament the United Kingdom leaving our friends, allies and main trading-bloc in the European Union.

I very much suspect that this action will be seen as foolhardy in the not too distant future. I fully anticipate that we Bremainers will fight for however long it takes to rejoin the EU in the future (just as the Brexiteers have fought to exit since the day we first joined in 1972, some forty-eight years ago). I suppose we need to let the old guard die off and then the youth and young adults can assert their optimism and hope in the European project.

Please do not give up on Britain, my fellow Europeans. We may be an island, but - in spirit if no longer legally - we are still part of the continent of Europe. I hope that the day will come very soon when we can once again proudly play Ode to Joy.

[Image description: the EU flag, twelve golden stars forming a circle on a Royal blue background]

Ciao! Bis bald! ¡Hasta pronto! Au revoir!

🤓

UK General Election 2019

All the hate and toxicity around General Election 2019 is fuelling my anxiety. I have woken in the wee small hours two nights in a row having a panic-attack. So, I have decided that this is my last political post until after the election.

Please do use your vote. The number of electors who abstain outnumbers those who vote for any party. We can collectively make a difference. Abstention in effect means support for whoever takes control. And by abstaining you are sharing in the culpability of their wrong-doing through your failure to act.

Please do vote wisely. Where necessary use tactical voting to ensure no-deal BREXIT is not the result. Currently, a vote for Brexit is also a vote for the collapse of the United Kingdom, as Northern Ireland will be forced to re-unite with Eire and Scotland will do its darndest to secede.

I should personally like to vote Green; but where I reside they have little support. On Thursday I shall be voting Labour, not out of love nor respect nor even admiration, but because I believe they are the only party at this election who just might be able to turn around the UK and prevent its break-up.

A final reminder: no-one will be able to turn around after the election and say that they did not know the consequences. Democracy is about shared responsibility of all the people for the people. Don your individual responsibility, use your rights and vote with your conscience for policies not for personalities!

Thank you for reading. %)