February 2017’s Monthly Look Ahead

It seems like only a few days ago I was making January’s MLA post but I managed to achieve some of things in that post (in spite of my lately stresshead phase).

I write this post to join in with the event created by Coolbeans. I enjoy visiting there, even though I don’t share a similar zeal for watching movies or TV, it’s an uplifting blog to read. I liked the idea of using this event for my blogging strategy mostly, to make a monthly plan and set myself some goals. I can’t really plan for any other kind of activity much at all. Keeping up with anything consistently is quite difficult, but the laptop helps keep me awake, so, here we are again, only a day late this time. Hooray!

monthly-look-ahead

I’m using Coolbeans’ original event emblem pic this month (and hoping they don’t mind!) – this is for the purple reminding of remembrance.

February is a significant month for me relating to the loss of both my parents.My Dad died over 20years ago and my Mum’s death was just last year.

 

26 days of February to go… nowhere as fast as ever, on the slow

o does a todo list work in any blog theme or just P2? apparently it doesn’t work here!

  1. Blogging101 / writing101 refresh, SloPo and whatever other learning practises I can manage, trying to regain some increase to cognitive activity levels, while physically exhausted and too soon in pain to manage anything much when up on my feet. I must try not to wear myself out so much whenever, whatever.
  2. Still temp volunteering a little at Blogger’s World (front-end only posting-level access only, no admin responsibilities there); an authorstory to write for 9th, having had a break from posting for it and very grateful to others for taking up the call for posts. I messed up my attempt at helping for a creative writing post, but I’m not practised enough in formal writing, for one thing. Sincere apologies to Pam and others for failing that commitment! Shakespeare401 to work toward for May.
  3. Still needing to visit blogging neighbours more, but reading fatigue not helped by stress of impossible wifi access issues on and off for whatever reasons. I waste too much time unable to escape the stress impacts of the silliest little things! I can’t just ‘go do something less boring instead’ to recall that jingle line of an old fave UK kid’s program, called “Why Don’t You…?”
  4. With contagious cycles of current new onset illness (contracted while out shopping on August 27th 2016) and this negatively impacting my M.E. and other health issues, it’s unlikely I’ll be getting anywhere out and about much at all this month.But I can do very small excercise along the garden path or in the street sometimes (contagion is only a mucoid / close contact risk, potentially, apparently). Funny how the general population have no regard for preventing spread of their own contagions, generally, while some of us have to confine ourselves as if lepers! Maybe because people believe so much absurd NHS misinformation and can’t be bothered to uncover the facts that lay beyond two clicks deep. Socially transmitted diseases mislabelled as STD is also very annoying, so is denying healthcare to M.E. patients so as ‘not to pander to the idea of being physically ill’!
  5. Anyway, I’ve steamed ahead with getting it together better at SwishingUp. It’s been on the P2 theme for ages, but in blog style rather than using it in message-board format. Unfortunately, trying to return the ‘Edit’ label to the posts and pages by ticking an option for ‘front-end editing’ has ruined it and there’s no way to return to my previous chosen style using that theme. I managed some extra customisation there and have more admin practise ‘work’ to do there yet. I might have to look for a new theme similar to how I had it there before or just remove and reapply the theme. Doh! Still don’t know how margins got removed and other stuff messed up there…
  6. I’m still blogging all over the place now and then! Sorry if it’s confusing to have different ‘rooms’ – is it easier to think of them as just a row of scatty notebooks on a wordpress shelf? I know I’m not the only one practising content in different themes. I’ve got to get back to speed at Snailzpace Daily too while Stu’s away so much! Next to music, blogging’s good ‘medicine’, it seems.
  7. I’m still trying to gear up to doing something creative every day, like managing a small daily sketch – but the day often runs itself out without even cooking a proper meal or doing basic things. No good forcing myself off my blog(s), it doesn’t help to fail to achieve anything! I’ve even failed keeping my handscrawled ‘daybook’ again after a fairly good start for a few small days last month. I did this, I did that, gets a bit depressing! I would like to keep a journal but never have yet and if I can’t keep up with entering my daily detail in a simple diary, then, well… I just need to keep myself going somehow better.
  8. Hopefully this month I’ll continue what I intended to post for the DP ‘transcript’ prompt, although that could keep going a while too, here and there; then there’s ‘The memory of things’ that really caught my fancy as an inspiring topic.
  9. Nutritional improvements are quite a necessity as is,
  10. spring cleaning and domestic reorganisation(!) one square yard or cubic foot at a time!

 

 

 

ME and mine

One of the really BIG problems of having lifelong Myalgic Encephalomyelitis is the misinformation generated widely in societies about chronic fatigue. Nowadays, the popularisation of the dustbin diagnosis of Chronic Fatigue Syndrome (as it was wellknown by in medical circles prior to the formalisation of the CFS strategy) is having devastating negative impacts on people with all kinds of specific medical conditions including cancers, HIV, multiple sclerosis, heart disorders, strokes – you name it and I’d bet you’d find someone denied a true clinical diagnosis and necessary treatment and support services under this bizarre outcome of CFS Strategy misimplementation.

Chronic fatigue is a general population issue and can affect anyone for varying reasons. Post-viral fatigue, similarly. Neither of these conditions of general temporary ill health are ‘a syndrome’. Neither CFS nor PVFS are necessarily M.E. [I experience PVFS as well as my generalised M.E. type health states.]

A smokescreen has been created with very widespread CFS propoganda by swagbaggers and swipesters – even the M.E. charities are forced to play along with furthering the CFS field in order to sustain their funding revenue.

M.E. patients are denied support as a result whilst the general public assume we receive support through CFS implementations. Nobody bothers to go more than two or three clicks to check information enough and so dole out repeated nonsense and assume they know because so-and-so-(web)info-states…

Nobody much reads the entire NICE2007 guidelines to understand the breadth of clinical knowledge, the limitations of NHS provision, the patient expertise and the knowledge of clinical experts. Propoganda still leads us to believe ‘doctors cannot diagnose this’!

The NICE2007 guidelines very clearly state that anyone diagnosed with M.E. or any other lifelong disabling illness cannot be diagnosed with Chronic Fatigue Syndrome. This guidance was due to have been updated in 2014, but I didn’t notice any consultation, nor any news of it, but also haven’t checked yet. There was no such diagnostic label as M.E./C.F.S. in the 2007 guidance but C.F.S/M.E. is diagnosed after an initial Chronic Fatigue Syndrome referral is confirmed as illness with Myalgic Encephalomyelitis.

This is a very complex issue that I didn’t wish to write about here today. To an extent I just have! [Only for interference with my use of my blog that distracted me away from my original post intention!]

It’s incredibly annoying, having a confirmed clinical diagnosis of Myalgic Encephalomyelitis, with devastating lifelong disabling impacts, being expected to meet a class-based stereotype of what my human condition should look like. It’s also annoying when government money intended to help patients is usurped for job-creation schemes for psychological based therapies to the detriment of biomedical research. of course, there are more annoying things, and for us all!

Scientific findings since 1984 have been locked away under the OSA, allegedly – possibly along with my own genetic data from my original severe phase as a teenager and possibly those of other patients.

Books like the one I was reading in the photo that refused to upload to my media library at my other blog, lumping causes of ‘fatigue’ under ’emotional and behavioural problems’, trivialising even general fatigue, and ignoring so many physiological factors, as if you can think yourself out of fatigue states, only adds to those things that can make therapies more harmful for the patient.

Writing365 #20 – new term of unfairness

Ritu’s reflection on teaching and the start of the new school year with the viral proliferation of ‘snuffles’ and germ-ridden children in the classroom was interesting to read.

Of course, a teacher writing on her public blog can’t stand up for children and parents in writing about this issue, or speak against policy impacting children’s health and rights.

As a parent of school-age children, now thankfully over a few years since, it was a constant problem that sick children are expected to attend school regardless. Nowadays, parents can be fined or even face imprisonment for their child having excess absence beyond a very small pre-determined amount. The enjoyment of parenting was completely destroyed at times for the nonsense that was sometimes delivered in the name of ‘education’. I couldn’t wait for my kids to grow up to escape the hell of school at some points. 

The medical condition I was diagnosed with as a teenager (and never fully recovered from) affects a lot of teachers. It’s sometimes called ‘Post-Viral Fatigue Syndrome (P.V.F.S.) and sometimes otherwise known as Myalgic Encephalomyelitis (M.E.) and these days the popular dustbin diagnosis of ‘Chronic Fatigue Syndrome’ (C.F.S.). None of them are necessarily the exact same medical condition. I’ve had illness with M.E. and P.V.F.S. throughout adulthood as distinctly different illness. I also at one point had chronic fatigue caused by carbon-monoxide related illness and although there are some similarities, there is also distinct difference.

There are also the general conditions of ‘chronic fatigue’ and ‘post-viral fatigue’ from which most people do actually recover but are neither M.E. nor P.V.F.S. Children with such long-term illnesses are often denied the serious implications of their medical conditions (some have died of heart failure during school attendance). You cannot expect to be able to see that the child is visibly ill much of the time, although they very often are.

One of the problems is that what may be ‘just a cold’ for one person or child, not impacting their ability to function at reasonable level, can be more severe illness in another individual. Forcing attendance and encouraging the spread of viruses is very short-sighted, as is not allowing all children the rest they need to recover before returning to school.

My daughter unfortunately had a severe throat infection at the worst time ever for her school – during the month of May when SATs were taking place (SAT =Standardised Assessment Testing, I think). It took three courses of antibiotics before her throat infection healed. She was incredibly unwell and needed extra time to recover better before she returned to school. She missed her tests.

This was not popular and I was expected to still take her into school. I refused – she had a bacterial infection that might be very easily spread. Her tests could either wait until she returned, or could be regarded as completely unnecessary for an obviously capable child whom her teacher knew very well.

When my son was small, amongst an earlier generation of primary school children, his school had to issue letters to parents repeatedly reminding them please not to bring children to school with obvious signs of transmittable illness. Some parents apparently were overly keen that their child didn’t miss school – or didn’t want the bother of them being at home.

The issue doesn’t just affect the children and teachers in school, it is brought home to families where some members may have immune-deficiencies. My own health was continually affected by the proliferation of viruses in school and brought home – even if my daughter herself did not seem to ‘catch’ it.

Although I have no experience of how things are now, nor in all schools, in classrooms, other public places such as waiting rooms and even on the bus, the levels of heating seem excessive and also encourages the spread of germs.

Photo taken in negative effect during Photo101, June2015)
Photo taken in negative effect during Photo101, June2015)

In my daughter’s school the sanitation provision was incredibly poor, there was often no soap for hand-washing and upon complaining you might be told ‘most children don’t wash their hands anyway.”

This is a brief reflection on an issue that seems unfair, written in response to the prompt for today in the 365 days of writing e-book downloadable from the Daily Post (dailypost.wordpress.com)