MLA April challenge post – a short list!

Let’s see if, for this MLA challenge, I can stick with less words and make a list without rambling on. Aiming for 300-400 words max on this. [Removing previous 546 words with unnecessary waffle ]

Monthly Look Ahead challenge badge (original version) designed by challenge host Cool Beans 4 dot wordpress dot com
original challenge badge (2015 design) from

This month I’m looking forward to:

  1. Remembrance of my mum.
  2. Outdoor attempts: small tasks in the garden. Obtaining compost, not achieved yet from previous MLA [ideas].
  3. Pressing my neighbour’s landlord to fix the boundary fence before it completely falls over. I need to be able to use my garden!
  4. Skywatching more often than not even a daily snap and maybe from further afield at least more than once.
  5. Shopping for my b-day treats – a book or two or a few. I have my wish-list ready, but no rush just now.
  6. Answering the question – why more books while you have plenty not read yet and you don’t NEED new books? And making my response next (at my main blog) for a recycled book reading challenge (RBRC).
  7. Seeing that darned film I need to see in a way that suits my awkward circumstances and contrary-nesses. *Celebrating April Fool’s month!
  8. Cooking and food! Attempts to gain increased natural enzyme production less artificially and increasing calorific intake.
  9. Simple posts, daily blogging routine and writing with less words for the A to Z challenge for this month’s mega blogfest.
  10. Knowing when to end a list and hopefully then achieving some goals!
  11. Other things with lists, eg. AtoZChallenge and Task-It-Tuesday etc.
  12. Listening to music, air my lungs, bang about or rattle along and enjoy moving around here and there. Hopefully.

[Goal achieved at 260 words by end of list. My AtoZ posts (tomorrow onward) are aiming for 250 max word count or thereabouts. It’s a good challenge to try~~! 290 words!]


Warm up posting (intended earlier)

To Do list & improving organisation trend / tendency …

I quite like this particular one of my personal blogs to try keeping with ‘blogging 101’ style as I made it for that purpose after starting my main personal blog (this is my primary one! nope, that’s not the same thing and the other one’s more a primary issue but you won’t get my contextual loop s’all personal referencing streaming flow)… while the theme of ‘blogging myself back to life somehow’ is taking what somehow feels like forever.

Bloggiesta finally got me to tackle one of those tasks that I didn’t need at the time during b101 workshopping with WP/BloggingU. Bulk editing tags and categories. very useful to have a practise of that – finally. Leaving it for almost three years wasn’t such a good idea! At my newest blogs it’s under control better from the off.

I have a micro-blogging site where I’m managing to post sometimes and only very short things like an occasional haiku or Limerick or photo. there’s not much there, although enough really. Now wondering if I kept to my schedule of something small at least once or twice a week. I’m not promoting it here.

Maybe another day. I decided I will change the url for that, potentially by April starting or thereabouts. I have a month of tiny companion posts for A to Z to schedule although I haven’t signed it up on the challenge.

So changing that url is an important task-to-do to (Risk Management) because as well as being a specific couple of words conjoined to the specific date of that blog’s creation and that being all I could think of at the time prior to realising) it has a certain connotation that some potential audience members might feel really uncomfortable about and I’d definitely prefer not to cause offence to sensitive readers with that issue before promoting that micro-blogging stuff in anyway at all.

At the same time it seems a bit absurd to worry so deeply about such an innocent thing as a couple of words and the date of creation. But I have now thought of an alternative and just have to hope it’s available when I get to that task.

But wouldn’t you know it as soon as I’d decided I’m deleting all those type of BloggingU categories – although they were also tags so quite appropriate to remove that duplication – yesterday I decided I really needed to make ‘writing201’ a category (but not a tag) from hereonin. (*hereon in US/AmEn) i thought I’d changed in the dashboard to UK English to stop these annoying highlights in the spell-check, but that must have been at my main blog. Sometimes it’s interesting to note a difference in our foreign languages, English v. American…

I’ve quite a few long, rambling posts that are ‘draft’ and might do the editing ‘course’ thing with BloggingU at some near-ish future point. I haven’t done any work on my fiction ideas lagging from 2011 and 2015 but then I’m far more interested in non-fiction as a reader and as a writer it’s only really blogging, poetry and art/social commentary that really fire me up.

I don’t see any reason to have ambition to be a writer of fiction (unless that’s your thing) and it’s great that there are so many with that ambition writing such quality stuff. I’m sure I’d enjoy much of it more if I were superhuman enough to get round to consuming so much more but hey, that’s just life as we know it.

Similarly, I’d love to be able to be a ‘book-blogger’ but that’s obviously not my thing either –  I enjoy breaking off from blogging and reading some from others who are, more than I enjoy reading fiction blogs.

I just don’t have energy for relaxing and reading enough – and really to relax and read you need a physical book to curl up. I s’pose a Kindle thing might work the same, but I’ve not tried one yet. Too busy living my life in my own stupidly strange ways.

I really must find a way to make time and space for curling up with a good read. That’s on my agenda as a ‘next 4 weeks’ time-frame goal’…

Anyway, back to the point of this post. The Spring Bloggiesta 2018Finish Line post had news of a new weekly challenge offering with ‘Task-It-Tuesday’ and this is my warming up to try make sure I don’t forget that. (I’m maybe adopting American grammar there? I’ve got no idea. I need a learning American language elementary class for sure! lol)

I hope my potentially majority-American audience don’t mind my clumsy English-ness too much. If I ever try writing a book of any kind I’ll have to make a translated to American copy. But only if I learn that particular foreign language with all the nuances of grammatical form.

I refuse to use software assistance for that! I’ll buy the book on ‘English grammar’ even though the title peeves! American grammar it looks like when I found it on grammar and I need to test if I can actually purchase the daggand thing (looks like that’s not a word but darned instead of damned, I guess dagand covers it better than doggoned … digressing again… and still interested in language points.

That’s not my curl-up book though (although I bet it could be, after reading a story… if I get it at the same time).

A long-term goal is summer blog-festing with Bloggiesta again. It’s only the weekend next time I think and should be easier going than trying to tackle the week’s worth in only the weekend. I’ve plenty to practise for blogging tech side of things and I found it’s a fun way to do that. While friends and family tell me about their plans for holidays and going to festivals or whatever, well, I’ve got my partying plans lined up too now. And I’ll holiday or get to something whenever it is that I do. I’m having fun and happy enough 🙂 I might get a beer or two in and a small Jamaican tonic wine for an iron-level boost. Better than a Guiness despite my tiny Irish roots. Tyskie or a Perla maybe.  Eastern European beer is so much cleaner than anything I ever tasted. And more culturally appropriate. I’m dreading Brexit for what it might do for our consumer market economy and I will be refusing to buy alternatives if our culturally appropriate products are no longer available or become more expensive. We’re still European, all of us English-born people, even if some identify less strongly. i’ll probably be blogging more about retaining European identity while we ride the storm in a tea-cup of what could easily be a looming crisis for the British population (including all UK citizens, permanent, temporary, not-yet-legal migrant peoples, all of us, ethnicity/origins aside).

I might even add small boozey treats to my shopping list for my birthday/Easter weekend treat if I can. Boozey treats and cheers. Not the thing for this post really. Well…

1 can 1 bottle. Or 2 cans 1 bottle (it is small that tonic wine, but 16% proof). That’s a ‘best value’ way of getting hammered nicely and getting such a good night’s sleep with morning-after legs being wonderfully oxygenated from the medicinal effect. Tempting.

Ok, next item.

A food post or two. I kinda need to spring clean domestic areas being a bit ‘houseproud’ … they’ve been on my mind a while. Or how about how everyone should have an easy open tin of something and a clean spoon in a bedside drawer in case they awaken very poorly while living alone whether they’re expecting ill health or not.

And how I’m improving my coping strategies might be good for an M.E. blogger, but this blog was never quite meant to be styled as an M.E. blogger venue and there are much better such blogs at that than mine is. I’m not conventional M.E. stereotype. That’s an added discomfort. I’ve never felt a ‘good fit’ for the majority M.E. community population. Although all individuals I’ve interacted with are mostly very nice. I feel like I identify more with those with sickle cell and their social exclusions and disabling illness. I have a post in mind about that. I could be accused of ‘cultural appropriation’ I s’pose. But I gave up listening too much to AmEn cultured literary advice a while ago now when it’s not so foreign to my own cultural identity. My hypothesis on institutional racism and why that 1984 Cambridge research held at Kew Gardens and classified until 2025 and then reclassified could endanger me somehow. I pay no mind to that. My blood is likely included. I was told the research findings from Cambridge researchers using my blood. They never had my express consent before looking at my blood and I didn’t understand at the time that my mum gave consent and I saw no reason for objection at the time. I had no idea it would exclude me from appropriate healthcare by becoming a lab rat for a classified project and so cause lifelong problems! And it pisses me off. Why is something they found in research NOT disclosed… It has to have solid ground to not be disclosed in such way. Do they want our corpses first? Oops. i guess I want to write about that. I’m adding this post to my writing201 folder to edit and polish, but I’m publishing in the meantime. Not to worry.

next item

My! I have to run and grab an edible whatever and do today’s must-do post (self-led must-do, no whip-cracker around – I’m only a community member, no admin or anything there) at Blogger’s World yet (21:24 BST/ 20:24 UCT/GMT) and as usual I do it on the fly and maybe it’ll be a short discussion post somehow now. And nowhere near the 10am GMT deadline suggested but it’s so quiet over there now and no-one’s bothering to post much for whatever reason. So going easy on myself. No guilt trip.

At the group blog I set up for learning and writing101 collaborations (and my own learning experience of setting one up) I have some admin stuff to attend urgently-ish. I might summer bloggiesta from there, not sure yet. I won’t bore you with the link, you maybe know where or will get there sometime eventually. It’s on a discontinued non-responsive theme. I want to keep it for unique visual identity of that dinosaur-theme and i don’t see anything as good for a group writing blog while looking more ‘swish’ is an un-necessary and irrelevant factor. i don’t want to go back to P2 because whatever i do with that theme to customise it might still look too much like the BW forum for my own liking.

Anyway, One4Fun keeps calling me too and some of this wordy stuff could extract to there when I polish this ‘shitty first draft’ (apols to polite audience for swearing anytime but there’s no such thing as bad language in polite society alike English cultured populace and I try not to overdo it would you believe!

S’all for now folks. Comedy capers. Is that Penelope Pitstop. Don’t s’pose there’s any on youtube. i’ll check some out eventually.

How about you? Don’t expect you to reach this point as a reader actually. you don’t even have to let me know if you are. Obviously. Wouldn’t be surprised if I’m stone-walled in a he-he happiness engineer loop seeing as I post outrageously venting musings. (the only MUSE i believe in though is the popular English contemporary music band.

Oh yeah, more proper poetry writing! That’s on my soon enough to-do.

By the time I do the challenge, with a structure, i promise I won’t make my posts quite as unwieldy / wildly as this one (and unsure i chose the right word in ‘unwieldy’ but no time for fact-checking! To do [NtS = Note-to-Self, in case that’s not obvious, wondering if it’s a poular acronym… another fact-checking excercise on the list]

All apologies! Uncomfy blocks. Gotta move some for sure! guess i said writing201 category folder 4editing &tc = etc etc etc etc [for any points i might have not ‘listed’ had it been a list post…!]

cheers all 🙂

PS – getting to the gallery within 4 to 6 weeks to review whatever art / rubbish they’re showing this season. bet it’s flipping excellent in parts. Usually wanna live there as long as possible while soaking stuff up. The stuff i think i don’t like at first sight often becomes incredibly intriguing after i get home or days/weeks following and so becomes loveable. definitely CAWS-related problem and i refuse to identify with any other syndrome regardless of whatever reality or delusional reality exists or not – CAWS = Contemporary Art Withdrawal Syndrome – but do have to say blogging fills that gap very nicely, even if you’d never believe Your Blog might be part of that kinda satisfaction. Cheers to You All too! (I’ll be with you soon as poss for a catch up read if i’ve not been over for a while and missing reading you there! {hugs} if you need some.

over and out [of room]!!!


Nice blogging afternoon so far 🙂 Just getting afternoon tea and remembering to call any meal I might like ‘breakfast’ – every meal does that surely – not having toast or cereal though… often can’t decided, gawd every home should have a butler? Enough people wanting or needing such jobs? I doubt it somehow. Modern life! I’d have preferred the times of mud and sticks type DIY I’m sure but we’re not even allowed cultural traditions when homeless in England/UK. And I hope my silly try-outs don’t send anyone on a downer. I overthink stuff. My mum always has turned out to be absolutely right – somethings just take years of getting to that eventuality of the happening thing that provokes me to realise that yep, Mum! Right again!

Can status posts be as long as you like sometimes? i guess not really. maybe this one is too long already? kettle calling pots & pans too…etc…

Mid-week Warm-Up (er, distracted, that post might follow sometime later…)

Mantra…. (what do call it when there’s no singing and only music? it’s that kinda piece…)

Relax, don’t do … (yeah, but i love relaxing with that track and can’t help trying ‘voice with instrument’ and feeling where there are ways to slide into it and even the gut-wrenching ‘ugh!’s when I get too off-harmony or nicely-nicely sickly ‘melodic’… obviously I’m not recording it my kit’s crap i’m learning drumming technique on jam jars like 2 beats a week and i sound awful anyhows.

I wanna make it wit chu -QoTSA Fox Unlimited something or another file in a You Tube offering so followed this and it was so appropriate as I both adore their music (and videos) too and because as I stepped into the YouTube virtual lounge the ad that had greeted me was a WordPress one. What a lovely bathroom. but i never take the piss there (do I?) my screen shot of that’ll make a fab prompt … one of these days…

Closing this post before I’ve even started, but this song is an old-time favourite of course. Although I’m a Led Zeppelin fan in a way, at the same time I’m NOT – although Page is a rock god of course and I think I definitely prefer his solo stuff. Realising I haven’t heard any for an age.  (Jimmy Page and Robert Plant, The Rain Song)

Nah, I’m closing with mention of another meditational melody: Radiohead’s  Daydreaming ‘

…and that’s another awesome video too! But I’m not watching.

I am letting ads play these days but also gotta be very careful with YouTube files cos trying out some ‘amateur’ offerings seems to cause big computer crashes, maybe a vulnerability. Never mind, and while grammarly dot com is such a pukey ad to feel obliged to let run for those ‘pennies from heaven’ for the creators/providers, I do let it run and practise Americanising my drone and drawl or squeaky clean and … just taking the piss… (but Lofi HipHopRadio or summatalikethat both didn’t cut it last night for ‘genre’ appropriate descriptor so fails our UK TDA, nor did it seem safe to try while it somehow crashed down my lab. Top. NOT… Hardboot. Time. (I might be stupid enough to try it again another day, see if it happens again, cos it might have been something else – and I should listen again while I snatched a screenshot fo reference for another post prompt!

What about some LimpBizkit… (not listening – at least not yet) BUT, yeah, at some point I gotta get back to my Premium blog that I’m never getting out there until I’ve paid for it for at least two or three years (on 1st quarter- oh god i wish!) of 2nd year subs but that’s not failing that’s my plan while i have fun freeloading so much- and that’s where this kind of post should be going really! Unable to tick adwords until miracles happen though as per UK Law and professional best practise, you s’posed to have self-employment registration and a registered business address clearly displaying on your web site or blog if you’re after those pennies from heaven. Is that right? It both appears to be and doesn’t appear to be all at the same time. Nevermind, again (maybe another day, mind, I really do gotta get down with the kitchen sink and into hot water!) I even got letsplayshop and no wants for N.I.Nails? No, No D.I.Y. plans. Really?! that’s a freebie but no asking allowed Right Now.

Auto-play stopped again, wifi down, security kicking in?

I’m off with the fairies for a while, Tea and Toast, prompt Elevenses…? (11:24am, BST)

11:30’s a good time to round off then. Here’s to another of my Imperfect posts. #IMP (not recommending it, an in house search methodology Testing… does that mean I covered my idea for using that WP ad prompt? Yes. & No. First response idea’s gotta wait in line till way off in the future…

1144publishing ARR



Photo Post for Mundane Monday #153

A mundane photo taken at an odd angle for my interest in the curving lines of the kerb and the straight lines of a metal barrier jutting into the image on the top right side quarter, making a shape as if the hands on a clock pointing to 5 past 3 but four thin diagonal lines and another horizontal almost give the appearance of a hatched or line-shaded area. In the bottom left corner I see the bright pink of my shoes and the blurred edge of my light coloured clothing. These and the greys of kerbstone and metal lines of the barrier contrasting against the dark colours and textures. of the wet tarmac surfaces of the pavement and road. There is a tiny sprinkling of green moving across the photo just above halfway from the left edge as Nature forces through the cracks in the pavement in the form of moss and small wild plants and weeds as if drawing her own lines at this point.
My feet on my street, January 2018

This is my photo for the challenge this week at:

Extra idea here:

I was wondering on this image while posting it. How to describe this picture for alt text? Anyone interested in an accessibility challenge? I don’t mean you have to describe the image to answer that question, but please go ahead if you wish to do so. Want to challenge me to attempt describing one of your images? Feel free to please leave a comment if so.

Mundane Monday’s Photo in lieu…

blue early…

Following intense weekend blogging efforts during every spare ‘resting’ moment during this past weekend, I’d arrived at my laptop and blog meaning to take part in the Mundane Monday Photo Challenge. Some distractions later and arriving at KO’s I didn’t see a challenge post there yet for this week. Never mind. There were some really nice photos there including one called ‘blue early’ and another called ‘green arch’ and I wondered on borrowing those phrases for a prompt while my Monday ran into Tuesday. Now I’ve finished my draft and ready to hit publish and grab supper and a cuppa I’ve been kindly notified that the challenge post is up. So I look forward to getting to that as soon as. You can find it at

I snapped a skywatching photo during the earliest part of my day on Monday 26th that happened to be afternoon (snapped from my upstairs loo open window while unable to get dressed and get down & out enough to do skywatch snapping better). I thought I’d post this photo in case there’s not a challenge prompt this week.

Then I realised there’s a big difference in our time zones and there’s still ten hours of the host’s Monday whence the challenge prompt might yet appear – only I’d then have to post while Tuesday here.  Chances are anyway that I’d need to delve into photos I’ve taken in the past if unable to think up a way of snapping a new pic to meet the prompt on the day. Never mind springs to mind again…

Here’s a Monday’s mundane sky in the meantime…

a mundane photo taken after noon on a day in early Spring, 26th March 2018. The photo shows a line of treetops against a light blue sky with billowing clouds in the distance and a low grey cloud to the right of the picture beneath which, in the lower right corner, a section of two rooftop chimneys appear in silhouette behind a nearby tree and it's still bare branches
Photo taken at approx 12:30 pm GMT / 13;30 BST

I’ve not been remembering often enough to add alt text to my photos. A few years ago now I attended a half-day workshop at our local city art gallery for training in describing for the visually impaired. I wonder if my descriptions of photos are adequate for visitors who might rely on screen reader photographic description so I’ll be looking out for some guidance and appreciate any tips or pointers.

My alt text for this photo says: a mundane photo taken after noon on a day in early Spring, 26th March 2018. The photo shows a line of treetops against a light blue sky with billowing clouds in the distance and a low grey cloud to the right of the picture beneath which, in the lower right corner, a section of two rooftop chimneys appear in silhouette behind a nearby tree and it’s still bare branches.

I wonder if that’s an adequate description, or if it’s too much?

I could have described my photo as ‘blue sky, clouds and tree tops’. When I’m exhausted sometimes that might be as good as it gets and maybe better for an alt text. Maybe describing my photo as if an art object isn’t best practise.

I’ll have to learn more about these things. And I know the date the photo was taken might not seem like relevant detail. But what if a person with visual impairments pauses the screen reader and explores the page and so missed the detail in the body of the post. Do such things really matter while it’s so highly unlikely that visually impaired visitors might ever arrive here?

Not until we’re all in our seventies or thereabouts will 70% or more of us be visually impaired. Will we still be bothering with internet technologies by then? I’ve a feeling if I’m around and capable enough I might be, at least to a small extent, providing such a thing still exists. If I can’t see so well by then, maybe I’ll be the only person in the world to ever be thinking thank goodness for my alt text description, I remember that photo so clearly now. Maybe that’s the approach I’ll take, just in case… Even if it’s selfish of me.




Windows shopping… and a sense of loss and sadness. For Emily…

(This is a post I felt compelled to write. I’m marking it for future editing and maybe extracting from it for other future posts or shortening it and reposting somehow else. For now, it’s ended up over 2200 words. Now I tried to think about editing it and it’s grown to 2800 words! It’s maybe a bit muddling away from the point in places. I’ll have to return to it another time after leaving it some space but I’m publishing it anyway otherwise I’ll forget. 

My sincere apologies for not making a better piece of writing while I am writing in memory of Emily – and while doing so then writing so much about my own experience and thoughts on the current M.E. debate. I feel there are some important points about that debate that should be of greater interest to the wider population and so I do wish I could write better articles. If you only want to read some parts, my main reason for posting was to share news of a book written by a lady with severe M.E. and you can find that information and a link in the lower segment of this post).

I’d love to get out in the real world for some window shopping. My last occasional jaunt was probably almost two years ago now! How time flies – and at least blogging can be some kind of fun – and an essential for keeping some form of interaction and human contact! Anyway, I count my blessings every day, nevertheless.

And although that paragraph makes it appear I haven’t got out at all, the nearest local small shops are only 750 steps away. Since last summer I’ve had no choice but to go out more regularly, when my electricity supplier withdrew online pre-payment facilities – unless I change to a smart meter and use an app and that being too difficult for all kinds of reasons and unwanted! – so anyway, I do HAVE to get myself out to a shop however many days or weeks it takes coping with the impacts of that exertion, otherwise  I’d be living with candles, battery-power and camping gas (always readily available in the store cupboard for emergency provision alike all homes need although so far managing the challenge adequately enough that they stay in stock!)

So I’m very grateful for shops being that close to home and the opportunity for  small jaunts out of the house. I’m even grateful for the fact that I might appear quite ‘well’ and so-called ‘normal’ some days. You might not even know I only threw trousers and coat over night-clothes and tidied my hair so not even ‘dressed’ appropriately. They don’t sell books though (and a lot of magazine and newspaper quality has become dire and so has the price in comparison to books!)

I’m even more grateful for online shopping potentials although even simple supermarket shopping with a pre-ordered items list available can take me longer managing the information technology than if I were to physically travel (even by bus) to my nearest big supermarket a mile and a half or so  to pick, pack and return with the load myself. Although that’s not been viable in quite a long time even if I’d used taxis. Never mind.

More than that, I’m even more grateful for a good local mobile shop van selling basic essentials like bread and milk and baked beans and toilet roll, tea, coffee, sugar etc. and we are even fortunate enough to have an ice cream van stocking basic everyday pharmaceuticals like antiseptic cream, paracetemol, indigestion lozenges, cough syrup. These both stop very close to my house so if I can get up and out to them in time these services are essential – so I take buying local seriously and whenever possible even if it’s more expensive for the product – it’s not actually if you factor in taxi or bus fare or delivery costs – or the prolonged impacts of quite short walks.

So I am very fortunate indeed. Not everyone has access to such blessings as I.

It’s staggering though, how much of a difference it made no longer being only 350 steps away from the nearest local shop, and now being 450 steps from a bus stop instead of 150 steps. It doesn’t seem like that much difference when you look at the numbers but it’s one of the many reasons I find myself still in the midst of quite severe relapse that’s been progressively worsening since around 2007-2008, big M.E. crash 2009 (perhaps with a non-M.E. event that was never managed properly due to domestic abuse and misrepresentation of my problems by my now ex-partner) and then of course moving home six years ago was the last thing I needed for the negative health impacts resulting from such effort -but the need for domestic change made it unavoidable while my ex-partner appeared disabled by his benefit status even though he had quite good general physical health and only a back injury but could drive a car, could have stayed locally enough with family etc. etc.

The negative impacts of ‘welfare’ and Work Program interventions were what should have been another avoidable factor to prevent further ill health – from around the time public service employees were being led to believe that changing a patient’s mindset and simple excercise and encouragement following the mass-marketing and promotion of the proven-to-be-seriously-flawed PACE Trials – a research project that turns out to have been funded by the DWP (in collaboration with other funding providers).

I’d missed all the good advice from M.E. organisations about claiming welfare (ESA) while I was too unwell to use the internet but just about able enough to attend appointments and going with the welfare literature for my claim – and wanting to be well enough to work and so became a soft target when the mandatory activity phase kicked in due to all the ‘claimant avoidance’ even though I’d not partaken in such ways of managing my welfare rights. I still don’t see how actually meeting the eligibility criteria ended up being the very thing that almost killed me through total deprivation of the means to live. Why did an old age pensioner’s state pension have to prevent me from starving for six months while she was enduring her own battle with cancer? Would she have survived longer or had better outcomes from her own treatments if she wan’t stressed by struggling to prevent my starvation? I couldn’t even do anything to help look after her!

But that’s all another story and a very personal and private one. And many a public story in the mix. I don’t really like writing about these things. But sometimes it’s good to let it out.

I prefer distracting my mind and getting on with anything else I can manage to do unless I’m totally incapacitated. Pain does sometimes hurt less if you can just take your mind off it and that is how I was raised – not with wrapping in cotton wool and not with medicinal pain-killers unless absolutely essential. I didn’t even recognise my own labour pains in pregnancy because I have always learned to cope with unmedicated pain. And that’s not a failure of parental care it was a necessity in the decades of my childhood and youth. It also protects my health from further harm due to the negative effects of chemical medicines upon my fragile or sensitive bio-chemistry and physiology. But not being prescribed medicine appears to evidence less severity or less acute disability and that’s nonsensical because a lot of doctors won’t prescribe any pain relief for M.E. patients other than perhaps something you could buy over the counter with no prescription and at very small expense.

However ill I am, I like to think “I live my life to the full every day” – even though it might not appear be be so from a ‘healthier’ perspective and my ‘big’ achievements might be very small and trivial if I compared myself among ‘healthy comparisons’. But I don’t.

Control. It’s all about control.

But I didn’t start this post to air my woes and it isn’t all about ME – but it is about M.E.

And the loss and sadness I referred to in my post title are not those you might assume I feel about the circumstances of my own life.

As it’s my birthday this month I decided I’ll squeeze my budget and treat myself to a book, or a few new books. A twitter notification in my email caught my eye this afternoon (while I’ve been well enough to check email lately) and there is in it a book I really must buy.

But more than that, that same item delivered me a tremendous feeling of loss and sadness. I didn’t know the author but her name has been familiar to me for very many years while I’ve been patient with M.E. I don’t even know when Emily Collingridge departed from our world or the details of her passing. I didn’t want to pry into the detail so haven’t tried. I have no doubt that information will reach me at some point, it will just appear in view as unexpectedly as this book promotion via twitter in my email did this afternoon.

I don’t stay ‘in touch’ enough with the patient world, nor even my own nearest and dearest a lot of the time. I was shocked – but not perhaps surprised – and upset as if I’d just heard a real world friend or acquaintance had died. People alike Emily Collingridge have been making a difference for people with M.E. for decades. And I wonder, is it that we are losing so many people or is it that news carries differently nowadays in saturating ways that overwhelm us in the online world and…

Why does the rest of the world turn so slowly and refuse to at least accept and try and understand? Is it because it is too easy to choose to believe the ‘nicer’ version of individual realities – that ‘you could get better if you’d just…’?

I worry sometimes what the world will become for people with M.E. without people like Emily Collingridge doing such wonderful things as to use their precious little energy to bring hope, comfort and support to others. Where would we be without people like the Countess of Mar, Jane Colby, Dr Charles Shepherd, Dr Sarah Myhill? Thankfully they are still with us. And plenty a good few more. But should they have to be in a position of forever needing to chip away at what seems an impossible brick wall while they advocate patient rights and fight for better awareness to ensure some humanity in the management of meeting the needs of the patient community. Where would any of us have been without people like Dr John Richardson, Dr Bell, Dr Alan Franklin, Dr Elizabeth Dowsett? How can so much of what is already known and known for decades be so discounted and undermined by healthcare business frameworks.

As our advocates and pioneers fade from this world, what will the world be like for future generations of people – children, young people, adults – people with M.E.? Multiple sclerosis patients were in a similar predicament until the 1960s or thereabouts. How many decades until people with M.E. have their predicament relieved? Mid-2060s or thereabouts when the UK government release research findings from the mid1980s that were classified until 2025 and then re-classified to prevent disclosure, until 2064? (or 2065, I can’t quite remember for sure and can type but killing my eyes with this screen and not wanting to research) But reclassified Why? So we can all pop off and die before we cost too much money? Why might we ‘cost more’ than anyone else? Why is the UK a nation with Equal Opportunities for all when so many are excluded from Equal Opportunities in such ways? (And I have in mind, at all times, all the overlaps with other human conditions and many of those patient populations also have others suffering such neglects and outrageous negligences and detriments).

I wouldn’t currently describe myself as an ‘M.E. patient’ because there is dreadfully little (or no) healthcare for people with M.E. You wouldn’t believe it looking at the M.E. Association’s survey of local authority’s specialist healthcare services because apparently my local authority claims to provide specialist services for M.E. Yet as a lifelong ‘sufferer’ I am excluded from that provision because of the Chronic Fatigue Strategy developments (aka CFS funded developments).

It’s all become so complex that not many enough can see the wood for the trees. I cannot access Chronic Fatigue Syndrome Services because I have a pre-existing diagnosis of M.E. (Myalgic Encephalomyelitis) from my early teens, confirmed again and again during adulthood. I can not be diagnosed with Chronic Fatigue Syndrome because I already had and have illness with M.E. Some medical professionals and others might still choose to call my M.E. Chronic Fatigue Syndrome even though I cannot and have not been diagnosed with CFS under the Chronic Fatigue Strategy protocols that led to things like the NICE Guidelines 2007 that inform and instruct NHS medical practice. I find it hard to believe anyone might think that developments over recent years are an improvement on what might be referred to as times of less awareness!

I should have been hospitalised with my first big M.E. crash as a teenager (following years of M.E. type ill health throughout childhood but regular enough school attendance and good enough grades) but my mum trained as a nurse until I was born and could provide nursing care for me at home while unconscious and semi-conscious and our family doctor called to the house. My mum could even change my bed while I lay in it even though she had a degenerative spinal condition and severe pain. Obviously as soon as I could stand I refused to lay in bed while she changed it!

Because I wasn’t hospitalised my condition is easily ‘evidenced’ as not as severe as those who were hospitalised during major onset because ‘confidential patient records’ can be withheld even from the patient.

While the NHS tells the world that C.F.S. and M.E. are the same, the NHS also tells us they’re clearly not the same. We are excluded from provisions due to the known harm to our health that is likely to occur were we to access specialist CFS provision. Local authorities often do not have specialist services for people with M.E. even while they appear to say they do. Since specialist CFS services entered the public domain other medical specialists can use the existence of CFS specialisms as a means to re-route the patient PWME (person with M.E.) and deny all kinds of specialist service access that should be available and appropriate. Back to spaghetti junction. Going nowhere fast. If I am developing heart disease, Parkinson’s disease, cancer and basically any other illness at all, I am denied appropriate investigation toward correct diagnoses and access to potential treatment protocols that would maybe even return some better health outcomes. And via this methodology so might many other people who don’t have M.E. because they might get referred to the CFS clinic and they might be accepting of a CFS diagnosis. They might even have their confidential patient information withheld from them. Call it healthcare? I call it crazy!

Anyway, from what little I know of Emily Collingridge I am definitely buying her book.  For everything it might be helpful to consider now and ready in case my progressive degenerative illness becomes more severe – and for while I’m aging, as very aging people face these dilemmas too. And as people with longterm M.E. might meet similar ‘aging effects’ much sooner. (I’m not even 50 yet and can hope for better days.)

At some point after I’ve purchased I’ll get around to rejoining A4ME and the MEA, (patient organisations) eventually- I’ve not been a member since the mid-1990s. These charitable organisations now include and represent the CFS patient community. Because they needed the CFS funding to survive. There are important reasons to do so whilst the CFS patient community might be denied routes to accurate diagnoses of other conditions while CFS specialist services help them adjust and manage what might be various pain and fatigue-related conditions and that perhaps being supportive for those patients enabling positive health outcomes enough.

There is a discount on Emily’s book available for A4E members, but I’ll take my copy at full purchase price. In memory of Emily and ever grateful for knowing her name, for her guidance, her strengths and wisdoms and very saddened she is now with us only in the words she has gifted for us but ever thankful that by way of her book she will continue to make a difference.

I’m sharing the book’s link at Action for M.E.

It might be a good guide for both people with M.E. and people concerned to learn about coping with care needs either for M.E. specifically or generally, for people with other conditions and aging issues etc.  There’s very good information on this link to the book to help you decide if it’s appropriate for you or not. It appears one we all might need eventually if we hope to preserve any little independence.

Thank you Emily. Thank you A4ME & all others making a difference, or at least trying. Thank you too, for reading and thank you to those who understand and to those who try to understand.