Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Monday, 21 March 2022

Durweston, Dorset

St Nicholas Church, Durweston, Dorset

Final resting place of Benjamin Tompson and Ida Lily Soppit

A sunny day for the supposed first day of Spring yesterday, so we escaped to the picturesque, thatched cottage filled village of Durweston, Dorset on the trail of yet more deceased relatives - a COVID-safe activity. :) We found the final resting place of a 1st cousin, 3x removed, Benjamin Tompson Soppit and his wife, Ida Lily (née Hepworth). Ida had lived to the ripe old age of 103 years 9 months.

Sunday, 6 March 2022

Jane Austen's House

Jane Austen's House Museum in Chawton, Hampshire

Excursions when you have severe Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are already very hard and always cause inevitable symptoms of Post-exertional malaise (PEM) - which I am suffering today after having had a bad night of pain and disturbed sleep. So, when one makes an excursion - for a significant birthday, as I did yesterday - get disappointed and see nothing, knowing you're still going to pay for it, only now 'for no good reason', that disappointment hits harder than it would to someone healthy who could just brush it off. 

This was also the first time I've been able to go out for purely pleasurable reasons since Christmas. The house, which as you see, is having work done to it (to the roof), which obviously needs to be done, but the scaffolding covers the entire building and courtyard area, so you can see nothing of its exterior at all.

UPDATE: They've sent me to pages that NOW have wording in capitals about the scaffolding. The wording is easy to spot - when you've been told to look for it, of course - but I still feel sure that I would have seen that, had it been there when I booked. That said, it still isn't really obvious, nor a banner on the front page and, all photos on their site still show the house uncovered so they're not really being clear / honest. I had also made my health situation and that, as a consequence, I cannot make a return visit, very clear, yet they have chosen to ignore and minimise that with platitudes. Not a satisfactory resolution.

Tuesday, 18 January 2022

Beware of Tickbox Tests with Myalgic Encephalomyelitis

Many years go, I took this Goldberg Depression Test and the score I got on that day was 77. [Over 54 is classed as Severely Depressed.] Today, taking the test purely responding on face value, my score was 81, to which the feedback was, "You appear to be suffering from severe depressive symptoms commonly associated with serious depressive disorders, such as major depressive disorder ...

Yes, agree appear to be. However, I know I'm not depressed. I have Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). And I'm angry.

Over the years, I've been presented with versions of such tests at various times, which have not necessarily been for purely mental health assessments. Although, I've also been miss-diagnosed as being depressed on various occasions and, in the early days, even I wouldn't have - didn't - contest that. Even 'well-meaning' (I'm not sure they are) ME/CFS, fibromyalgia and pain services use this type or similar tests in their assessment and screening processes and even if the purpose is to 'rule out' depression, I'm not convinced that would be the result.

To me, it’s easy to see how physical diseases get wrongly blamed on psychological causes, although the reason they do - in my opinion - is down to ignorance and (possibly wilful) inadequate interpretation of tick box results. 
  1. I do things slowly? Of course I do some things slowly. Sometimes deliberately while pacing. Mostly because I’m physically ill and utterly exhausted. The first time I really noticed it was when I was interviewed and listened back to the audio recording and could hear that I was talking slower and, while not slurred, sounded like I was a bit stoned or slightly impaired. This obviously had a physical / neurological, not psychological cause.
  2. My future seems hopeless. It does. I’m barely able to leave my bed, let alone the house, due to being, you know, physically ill – and I've been getting consistently worse since 1973 –  with an illness that is barely believed, criminally under-researched, utterly untreated and even less cared for ... so yeah, no f*cking surprise, my future seems pretty hopeless. Tick.
  3. It is hard for me to concentrate on reading. I have an illness that has physical causes that makes it hard to concentrate. So tick. I really can't take in anything beyond two or three paragraphs, because after that it may as well be written in Sanskrit for the amount of sense it will make. It's impossible to follow the plot of a book. Because of pain and fatigue in my hands, wrists and arms, I can't hold a book, or even a Kindle, so yeah, you could definitely say that it's hard for me to concentrate on reading.  
  4. The pleasure and joy has gone out of my life. I feel nausea, general malaise, serious pain, can’t even stand up, much less do any of the things I WISH I COULD DO, so of course the joy has kinda gone out of life.
  5. I have difficulty making decisions. Should I have a shower? Will the warm water help pain, or will the effort cause exhaustion and post-exertional malaise? Should I leave the house for an hour's pleasurable outing, or will the payback be unbearable. Of course it's difficult to make decisions when simple things that healthy people take for granted have these repercussions.
  6. I have lost interest in aspects of life that used to be important to me. When one's physical illness means that the cost of doing them - in terms of exhaustion, post-exertional malaise, pain, etc. - is so high, is it any wonder if we dismiss doing things that once would have been important to us? In fact, I'd counter that it's a necessary precaution to shift priorities in order to let go of doing too much, to facilitate pacing and reduce symptom exacerbation.
  7. I feel sad, blue, and unhappy. Imagine feeling the most ill you have ever felt with bad flu and a hangover, day in, day out, 24 hours a day, 7 days a week, for almost 50 years and tell me you wouldn't feel a tad sad & unhappy!
  8. I am agitated and keep moving around. Nope. One that doesn't apply! Well, agitated as in angry for the way we're treated. You could score me as moving around for the constant visits to the loo with an overactive bladder! :)
  9. I feel fatigued. Utterly. But the fatigue I feel is not that kind of fatigue, but they don’t qualify it. My fatigue isn't 'a bit tired', it's where effort causes a total system fatigue and collapse; where one physically can't make muscles work, even internal organs over which one has little or no control.
  10. It takes great effort for me to do simple things. Yes, even contemplating simple things takes great effort: it’s no surprise, given the nature and severity of my physical illness and the amount it disables me.
  11. I feel that I am a guilty person who deserves to be punished. Well, my mother would have wanted me to feel this guilt, but she failed. But given the amount of medical gaslighting we come in for and the level of stigma, which often leads family members and society to doubt us, or worse pile abuse on us for being ill, I have no doubt that many are made to feel this guilt. This still does not apply in the sense that the tick box test was asking though.
  12. I feel like a failure. Ditto the above. We aren't exactly encouraged to think being this ill, even when believed, is a success, are we?
  13. I feel lifeless -- more dead than alive. Of course I do! I spend 24 hours a day in bed on at least 6 days a week and the farthest I 'travel' is to the bathroom and back. This existence (it's not a life) is repetitive and, but for the simplest of activities, utterly pointless. I also feel constantly unwell and I've been ill since 1973 and not yet had any treatment. It's a living death.
  14. My sleep has been disturbed -- too little, too much, or broken sleep. All of the above. My sleep has been disturbed since forever: but ditto, this is caused by physical illness (and makes the physical illness worse). 
  15. I spend time thinking about HOW I might kill myself. To be utterly honest, yes I do. Many times I have reasoned that I find my illness and symptoms unbearable now, so if my quality of life were to reduce any further, death would indeed be preferable. I say this dispassionately and logically.
  16. I feel trapped or caught. Having been ill since 1973, having had no treatment, no respect, very little care; been neglected, gaslighted and abused by the medical profession; being imprisoned in the house by illness and unable to see any way of changing this, yes, of course I feel trapped.
  17. I feel depressed even when good things happen to me. In a way. Even a pleasurable outing causes repercussions; a 'nice' meal causes gastrointestinal symptoms, or PEM from sitting up for a few minutes; couldn't even manage to put up Christmas decorations ... I can't think of a single good thing that could happen that wouldn't also cause some repercussion or payback and almost 50 years of this means that one is not really moved to happiness much.
  18. Without trying to diet, I have lost, or gained, weight. This is a well known symptom of ME/CFS. Some lose weight as they're unable to eat. Some gain, due to buggered up metabolism. Many gain weight because of prescription drugs (Amitriptyline is a frequent culprit.) Some, maybe because food pleasures are all that's left. It isn't from a purely psychological cause.
That’s without counting other things that are bound to affect one's life at various times like housing problems, financial problems, politics … any manner of things that are not depression per se or are very good reasons for it. 

What I'm trying to demonstrate is that truthful answers to such tests will suggest depression – if taken on face value - which is all that is done with them. 

So, why am I bothered by this? Well first, of course, I'm exorcising my anger! 

Last year we finally got new NICE guidelines (Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management) that SHOULD have killed the psychological stranglehold on our physical disease, but I keep seeing reports and comments where it's clear that's not the case and reality is still being denied or distorted; services that have nothing else to offer are having to re-word, but essentially aren't changing their approach; there's still precious little support for ME/CFS in the media to change the perception and yet the charities have been practically silent. And now, on top of the decades-long contempt for ME/CFS patients, comes the vilification of LongCovid sufferers. 

Anyway, I have enough experience to imagine it likely similar tests are still part of an assessment or screening process for ME/CFS or LongCovid services. There is unlikely to be any concession for qualifying one's responses and those scoring them won't 'read between the lines'. What would I do if I were given one of these in an ME/CFS context again? I would spoil the paper and write on it that it does not apply in this context. I would not fill it in. You must make your own decision.

Friday, 31 December 2021

2021 a year in review

Hythe on a dull and miserable Christmas Day

The first time I left the house in 2021 was to Escape to Hythe on 25 Apr. A lot of the reason for that was feeling so ill after my first Covid Vaccination in February - from which I have never fully recovered back to my usual baseline. Imagine how bad actual COVID could be! It makes me even more concerned about making sure I don't catch it - vaccinated or not and I have now had both doses and booster - and ever more angry at the complete lack of protection being afforded us.

The next time I went anywhere was to Hamble on 30 May and the consequences of that 1¾ hour outing were really too much to make it worthwhile.

We tried to go out on 14 Aug, but I twisted my ankle and had to abort that.

North Devon 2021

We did have a holiday in north Devon in Sep and I really should be grateful for that (and am for the walk along Saunton Sands, although the consequences of that simple thing were a bit much), except the preparations running up to the holiday were fraught with stress and difficulties, the accommodation really wasn't great; food shortages had an impact; there was so much I was unable to do because it was inaccessible due to being so busy; where I could not stand to queue and, to be honest, I came home wanting to cry, feeling like I needed a holiday.

Didn't go out again until 19 Dec to Bournemouth Christmas Tree Wonderland. 'Paid' for that with Post-exertional malaise (PEM), but for once, it was worth it.

And about 10-15 minutes in Hythe on Christmas Day.

Otherwise, this Christmas has been as dull as the weather. There has been far too much making do, although compared to most people we really haven't had many excesses and still the richer food than normal hasn't agreed with either of us.

As for 2022, my expectations are low and I think they need to be to be able to cope, otherwise the disappointments would be devastating. COVID isn't going away any time soon. If we can manage to get away to somewhere where no other human wants to go, but is still nice, that would be a bloody miracle. 

Sunday, 26 December 2021

Christmas 2021

'Upcycled' containers and home made crackers 

Myles trying to open his own pressie

Unwrapping the Class A Catnip

Noah looking dapper in his new bow tie

Christmas 'socks' in Hythe, Hampshire

Guerrilla crocheters have attacked in Hythe!

Christmas Day walk along the shoreline of Southampton Water at Hythe, Hampshire